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I spoke with someone who is helping with this study and she said the kids are riding 1 hour at a time, 3 hours a week. My understanding is that it primarily helps the bladder by tightening the sphincter (like kegel exercises) which helps kids stay dry in between cathing. We are going to start riding our horse more, document, and see if there are changes.
Sorry, forgot to mention the study is being done over a 6 week period.
I know very little about this, but when you say it goes much higher up in the colon, did they address how this might affect intestinal flora?
The presenter didn’t mention intestinal flora at all. I do wonder if there are health benefits to just using the cone enema over the peristeen–plan to ask my nurse/doctor and look into a bit more before deciding to make the switch.
So I did a little research about intestinal flora and enemas, etc. What do you think about the idea of adding probiotics to the water? I don’t know much about the peristeen system. Can you add something to the water using their system?
Just like irrigating the bladder with d-mannose sounds interesting. I find adding probiotics to an enema equally interesting.
Livestrong indicates that they have done scientific studies on probiotic enemas:
“Probiotic enemas have performed well during scientific studies to help reduce the symptoms associated with Colitis and other bowel disorders”
Thats really interesting–I wouldn’t have thought of adding probiotics. Once we did try adding herbs and salt and it was the one time the enema completely did not work–absolutely no stool came out. It was kinda bizarre. Salt apparently makes the water less irritating–when the irritation actually helps. But, if it doesn’t make any difference in the effectiveness, adding probiotics makes complete sense. You can add to the water with the peristeen just like you can in the cone enema. I have started increasing Claire’ s oral dosage of probiotics but I have not been able to find a lot of info about how much is ok. I read about one mom online who gave her kids adult dosages but in the brand we buy (RAW), the package says in bold print not to give to kids. But, I do give her more than the traditional children’s dosage.
Have you ever seen a local Naturopath? That is the type of question I would ask my ND, for sure.
I really wish one of those Naturopathic Clinics was closer to you. The Seattle one was so impressive. The Portland Naturopathic Clinic had a doctor that specializes in brain, spine & GI. I sent his info to Tracy. I thought that was such an interesting combination of specialties.
Hey ladies, just as an FYI, Florastor is the probiotic recommended to my dad by his infectious disease doc to keep all manner of intestinal nasties at bay. This was the docs official regimen to keep dad healthy after repeated bouts of C. Diff.
There is a Florastor for kids.
Its an interesting idea. I can’t see how it would do harm, but I wonder if it would actually do any good. I’ll have to read your link,.Tspar. I would think they would mostly just wash back out.
Wash back out, yeah, I suppose. I hadn’t thought about that. I don’t think Livestrong cites their source on the studies. Oh, actually they do have three links. I will have to go read them later. Interestingly, the first commenter says a probiotic enema may be necessary after a c.diff infection.
What makes Florastor special. I know you have mentioned it to me before. I think I’m missing it’s significance?
Well, TBH I haven’t spent a lot of time studying it. I know that it is a yeast and not a bacterial probiotic and I know that it is designed/intended specifically for the gut as compared to a general “good all over” sort of probiotic. That’s about the sum of what I know. It has just always impressed me that it was the “go to” for the infectious disease doc who, in my imagination at least, would be the sort of guy to go for drugs always. ??
I have been told that enemas are actually a great way for the body to absorb nutrients but in the case where I added the herbs, I was supposed to leave the water in for longer…I think 5 or 10 minutes..which would not be doable on a regular basis. We leave the water in for 2 minutes with the cone and the peristeen presenter said that the balloon deflates right after the water goes in–no more than 30 seconds or so.
This is AMAZING! I’ve now read and watched quite a few articles and videos about this.
What struck me was to have the world’s leading spinal cord experts saying that they have been waiting for this their whole careers.
It’s so interesting that the olfactory bulbs are the ONLY cells in the nervous system that are continually regenerating. Wow, that provides so much hope for the future.
Yes, I have been trying to evaluate how excited about this I should be. One article I read compared it to putting a man on the moon, so I figure this must be pretty significant. Of course, researchers will probably do many studies on spinal cord injury patients long before Spina Bifida but regardless, its very encouraging!
When we had a stander, Claire tolerated it for very short periods of time because she couldn’t reach anything, etc. So, her time in the stander was just as time intensive to me as standing next to her and supporting her because I was trying to keep her entertained the entire time–bubbles, etc. My inclination would be to not worry about the stander at this point, but these things take so long to go through insurance that if she does take longer than expected to progress, you might have wished you started the process earlier. Are you positive you can’t borrow one? Another option is to order knee immobilizers-very small/inexpensive. They will force her knees to be straight–I would only use them for about 5 minutes at a time–but they will teach her brain, “this is what is feels like to be tall!”
Bracing….a good orthotist is hard to find so if indeed the braces were better then I would drive 2.5 hours but I would probably have a phone conversation/look online/ask for recommendations (PTs tend to be good at recommendations) before committing to that drive because, at least in our case, braces need a lot of adjustments. If you do decide to get afos/smos (I would tend toward smos), I would give her plenty of time out of them–she gets so much feedback from her feet that will teach her how to walk.
I’m not sure if Z is ready for this: http://www.amazon.com/Little-Partners-LP00401-Learning-Natural/dp/B001ECHXVC/ref=sr_1_1?ie=UTF8&qid=1414107022&sr=8-1&keywords=learning+tower
We love our learning tower! When C was younger, I would put playdough on the counter while I cooked supper. Now, she gets in herself and helps out with supper. Great for standing.
These are all great questions, ones that I have been thinking about myself. I don’t have much in the way of answers, but have a few things to share.
For what it’s worth, Shriners refers all their patients to local orthotists, meaning the orthotist located closest to their homes. Their reasoning is for convenience purposes for the frequent sizings and adjustments.
The only other thing I have to offer is. . . did you see Camilla’s review of Aqua Therapy? It seems like a great option for building strength and skill without the stress on the knees and ankles.
Camilla, just out of curiosity, what is Anat’s position on aqua therapy? I know that she says you should not put a child in a position they cannot achieve on their own. But what about aqua therapy?
I know at the Anat Baniel Center they said being in the water is great but instead of doing exercises, they would just want the child to explore freely. Same with riding horses–they think its good if you are not forcing the child to do exercises–just let them ride.
Very interesting–you should message her. 🙂
Thank you ladies. I really appreciate all the extra insight!
Its the many adjustments of bracing that concern me. Our clinic is not only the 2+ hours away, but it is in a different state. But I’m encouraged to know that Shriner’s refers people elsewhere. I guess we will see what happens. I don’t think my PT has any recommendations. She’s too new to the area, though I expect she could ask others at our practice. We will see.
I don’t know about borrowing equipment. I haven’t asked anyone. Once we see Ortho (So I can say, “Her doctor wants X”) then I can pursue that if need be. Honestly, Z gets better every day. I’m not sure we will need it. She stood up on her own (holding on to an ottoman) yesterday for about 10 minutes. I’m pretty pleased with that! I am concerned about that foot though. It turns enough that all her toes are not on the ground. Can’t get feedback from toes that aren’t touching.
Fortunately, on both the bracing and the equipment fronts, we have amazing, amazing insurance. We have a rep we work with and have worked with since before Z was born. She’s awesome. As in she gave me her personal cell phone number, while she was on vacation because we had some things in process at that time. I have to get her approval before we can order equipment, but she’s already told me she’ll approve anything I request. So at least, I don’t anticipate a delay there beyond just getting the document/prescription to her.
Aqua therapy interests me, but we would have to find a totally different therapist for that and I just haven’t done it. She’s done well enough up until now that I haven’t seen the need for more therapy. I’ll be interested to see what feedback I get both from her doc and from CHB. If it seems really worthwhile we might give it a go, but I’m really keen to not overdo the therapy overall.
The stuff about AB is something I can’t totally make up my mind about. If we were talking about a typical child, I agree 100% that they should come to all things on their own. But I wonder how that is applied when talking about a child that is never expected to do something, like a paraplegic child. Eventually that child may learn to transfer from a seated position into an assist device to be upright, but that could take many years. Surely the benefits of being upright outweigh the benefits of waiting to develop the ability to transfer totally on their own? And of course, our kids are in the middle on that one.
Z can absolutely stand. But she hasn’t yet worked out how to stand up, to actually get herself into a standing position. Well… so how does that work? By standing her up, I’m putting her in a position she can’t get into on her own. But once she’s there she can totally do it on her own and stands to benefit. ??? Maybe I don’t understand it just right.
Anyway, we are in a little holding pattern for now. I’m happy with her improvements in terms of toleration.
OH, and I had seen that tower once before. We thought about it for Z’s brother, but space is super limited and he is a TOTAL monkey. I fear it would be a hazard because he would just use it to launch himself to the top of the fridge!! Come to that, it is a concern for any equipment. He’s totally in love with her little ZZ chair and will use it any time he can. Taking him into consideration makes this all the more of an adventure.
How would I message her?
I searched for her on Google & Facebook, but no luck.
Regarding the ABM philosophy, I’ve thought a lot about it.
They say not to sit a child up because their brain makes so many connections in learning to sit-up on their own. OK. So we have never worked with her on sitting, though she obviously sits on my lap and in her bumbo, car seat, etc.
But the more I thought about it, I thought, even if I teach her to sit before she can move from lying to sitting, once she does accomplish that transition, won’t all the connections be made then???
But where I DO see the problem is when it comes to sensory issues. If I remember correctly, the son of the Group Owner on Baby Center developed a fear of standing (she described it as a sensory disorder) from being placed in a stander. I would go look for the post, but I swear Baby Center’s search function is broken. I can never find anything I search for, even when its an exact match and there are only a handful of posts using that word, like acupuncture, remember?
So that is my main concern with standers.
Camilla, does Claire wear any braces in the water? If so, does it damage them? I’ve read other moms have a designated set of braces for the water. As we are about to be fitted for our first set of AFOs, I wonder if I should be taking this into consideration?
I certainly don’t know how you would handle a baby who cannot yet sit without, sooner or later, placing them in a sitting position. That doesn’t make any sense to me. I understand not pushing and shoving them around to make them sit (essentially PT Ha!), but not putting them in a sitting position I don’t get.
In any event, I don’t see how it could negate the therapy overall. I don’t know anything about ABM really, but I know Fedlenkrais was developed by an adult, one who had presumably learned all the ordinary ways of sitting etc. He clearly still benefited.
The sensory issues would make some sense. I don’t know that I would care to be strapped into a device all the time. I know we have a little toy that is akin to an exersuacer, only better I think. In any case, we never ever put her in it if she indicates that she doesn’t want to be there. I can see how strapping a kid in for their allotted time period, and ignoring their complaints thinking you were doing what is best, could create some issues.
TSpar, I don’t know why you would need bracing in the water. Its not like you are there for hours and hours, and the water takes away so much resistance. I would think it would be fine to just have little bare feet. I know the mom and braces you mean, I just don’t know why they’d do that. I’ve never asked because it didn’t apply to us.
So this is the part I found the most interesting:
“Her legs, which had grown an insignificant amount until then, have not only gained substantial muscle mass but have grown five inches in the last year. She had no voluntary movement from the waist down until one year ago but is now on her hands and knees crawling in perfect symmetry.”
Bladder and bowel improvement doesn’t surprise me, though it is very encouraging. But leg growth and muscle mass and going from no movement to crawling. That sounds too good to be true. I want to know what she attributes it to.
I attribute those changes to daily aromatherapy massage using essential oil blends as cited in response below. Jess seemed to gain quad strength which prior to had been none according to her PT at the time monitoring her range of motion/movements/abilities. Massage including essential oils improves circulation, overall range of motion, strengthens well being and pure essential oils used in a carrier oil have therapeutic attributable effects.
Umm…is there a contact for the SB association website? You could send a message saying the testimonial was of interest to you and you would like to learn more and just ask your info to be forwarded to her.
MrsK, sounds like Z is doing great! I see the ABM essentials as more guidelines and of course, you know your child best.
I think the primarily problem with putting the child is a standing position before they are ready is that is teaches them the wrong way to stand, “when I stand I feel wobbily, my knees buckle, my ankles feel unsteady, I fall.” However, Z is obviously very high functioning so if she is enjoying it, then I’m sure its fine.
As far as sitting, the ABM answer to the way the child would learn to sit would be to go to lessons. But, again, if the child enjoys being propped up on a nursing pillow or what have you thats different than being put on a wedge/ball in PT given just enough support to not fall but feel like you are going to.
Lots of kids who do ABM use wheelchairs (like you mentioned kids who are paralyzed). Anat and I have discussed C using arm crutches in the future if she is unable to learn to walk independently. However, we will only use them if her mobility plateaus and she is clearly not advancing. In typical PT, they use crutches as a learning tool to work toward walking–if we had let C use crutches when they were recommended by PT, it would have reinforced a lot of bad patterns and I am confident she never would have learned to walk independently but probably struggled with them for a few years and then stopped using them all together. I don’t know for certainty that C will walk independently but if she doesn’t, we will have let her develop as naturally/as much as possible and then introduced crutches when her body was functioning the best it can. A friend of mine who whole heartily believes in ABM and whose son routinely has lessons has her son use crutches (he is actually borrowing Claires:)), a walker, wheelchair, etc. Anat probably wouldn’t agree with the crutches–and I’m not sure about the walker–but my friend sees gains made in ABM lessons but then also deviates from the method as she sees beneficial.
Anat strongly emphasizes floor time. Its not that you shouldn’t use a wheelchair, you should just allow for a lot of floor time–allows the child to make connections. Anat would say that movement and learning are connected.
We don’t actually go to aquatherapy–just use a hot tub. C has worn braces in the water in the past and it does wear them down but doesn’t destroy them. Currently, her feet are flat enough post-surgery that she goes barefoot.
From what you describe, it does sound like Z would benefit from braces. Our local hospital lends out standers/walkers. If your insurance is good, I see no harm in ordering it and if she doesn’t need it, just give it to someone else. Someone would be thrilled to have it, I’m sure. 🙂
Ok, I emailed them.
Thanks! You clarified a LOT!.
We do tons of floor time. In fact, though you shouldn’t tell my PT this, we really only do PT when we are there once a week. And if I see she is trying to do something we’ve done, occasionally I will boost her a little, or support her or whatever. But mostly I let her hang out with her brother and whatever toys are out. I often put her where things are just out of reach, which never fails to motivate her to move.
She definitely loves the standing. And if she’s not in the mood, we don’t do it.
All the rest is in “wait and see” mode for a couple weeks, but will update you when I have more.
I would love for her to do a guest post here! I was very fascinated by this article. I also would like to know if she does limb massage on her daughter. We do paraffin leg treatments and AromaTouch massages and can tell a difference in strength and circulation/healing of sores when we are consistent.
Do you do the paraffin leg treatments yourself or do you take her to a practitioner?
We have a local gal who does them. It is at a day spa. The lady who does the paraffin treatments has a medical background and comes from a whole family of physicians and therapists, so when she suggested the treatments I took notice. Lauren definitely benefits from them and also just loves feeling really pampered. It is probably something you could do yourself if you had the materials.
Such a sweet little girl! I love that you have such a balanced approach to this, it is all about what is best for our children!
So they forwarded my email to Kelly and she contacted me this morning. Yeah! Her daughter is now 25 and she has graciously offered to answer our questions. I told her I would post my list here. So here goes:
1) Did you ever try Belladonna as a bladder treatment?
2) I posted a quote from your article in my comment above, what do you attribute her increased growth and mobility to?
3) What are the things that you found most successful in helping Jessie achieve bowel and bladder continence?
That’s all I can think of for now, but I’m sure I will have more as the conversation continues.
1. I did not use Belladonna in Jessie’s care. That is a very potent/potentially dangerous herb/plant to use & I would not suggest it’s use unless homeopathic only.
2. I attribute the enhanced growth to daily massage using essential oils. Too many benefits to list – rosemary, lavender, citrus and myrrh in a carrier oil such as olive oil or avacado oil – only 2 drops each essential oil into 4-5 oz of carrier oil. It was a bedtime ritual during storytime – fairytales in fact.
3. One of the most important things I started for bowel management was when Jessie was introduced to bread products, it became mandatory that our household went whole wheat only. Avoid white flour products. It’s crucial to keep bowel transit time to a minimum – constipation must be avoided always… around the age of normal toilet training time I began to notice Jessie would complain of ‘tummyaches’ this was to be her discription or forewarning signal of an impending bm. We cashed in on that warning – right to washroom people! Kids with spina bifida will/can have ‘patchy’ senses of feeling in lower extrems – listen to their verbal cues. Avoiding constipation is crucial. Push H20. Always offer H20 instead of juice – water down the juice too – this will also keep VP shunt emptying correctly & avoid shunt drainage issues – constipation equals shunt troubles.
Bladder continence prior to Jess turning 6 yrs old was a non issue. Jess used cranberry, D-Mannose and some bladder herbal strengthening blends to avoid UTI’s and calcium/magnesium also for it’s smooth muscle relaxing effects. The time came where she did have her begin to use Ditropan in addition to self catheterization for obvious social age important reasons. She has been bladder continent/managed successfully to this day and has been independent in her self care in that manner since, As explained in my email with you – certain allopathic medications are lifesaving – obviously.
Thanks Kelly. So much great information to look into further!
I thought of a few more questions:
1) How is your daughter’s mobility? Did you do traditional PT or alternatives?
2) In your email you mentioned reiki. My craniosacral therapist is also trained in reiki. I know nothing about it. How did you use it and how do you think it helped?
3) You said you left banking to study herbology & aromatherapy, do you have a private practice? If so, may we list you as a reference in the Physicians & Therapists page?
I took the test and was positive for MTHFR C677T which I believe in the most common of the mutations. I believe 40% of all ppl have this type of mutation so for us its clearly not the smoking gun as to the cause of SB. However, I take the metabolized folic acid just to be safe (in case of unplanned pregnancy)–I have not noticed it effecting my general health in any way.
1. Jess had a T10 Myelomeningocele repaired surgically within hrs of her birth. She was delivered by my choice by c-section to make things easier on her. A VP shunt was called for 10 days after her birth. Her mobility as a young adult now at 25 is manual w/c, she tends to the horses, drives a 4-wheeler, a golf cart, lawn tractor and has her own vehicle with hand controls and from the very get go – her 1st w/c was/we insisted ordered without push handles…. she did not need pushed around & we politely discouraged that pattern. She is a very independent well adjusted young lady.
We had the usual physiotherapy routines as provided by the children’s center in Toronto when she was a child to help us monitor her. Keep what other holistic modalities you provide to your child to yourselves I suggest when it comes to physiotherapists… use the services as an extra set of eyes on the developments of your child’s needs.
2. Reiki is technically considered energy work. It is valuable – I understand premise of cranialsacral therapy as well they are two different things but each time honoured in there own way. Hands of Light by Barbara Brennan is a good introduction to understand energy work a little more. It’s real. Balancing. Effective. Non-invasive.
3. I had a very busy practice in Toronto from the early 90’s to 2000 but then I fulfilled a dream & moved to the country with hubby to raise our family of 4 kids, I still see selected clients dependent on the situation. I’m about 1.5 N/E of Toronto. If you would like to list me please do so as a Master Herbalist. Contact by this forum or email address. I would like to be of assistance to families b/c I had to become the Herbalist I could not find.
Sounds like we utilize traditional PT, just like you did. And yes, sometimes I have to smile and nod and keep the rest to myself.
Thanks for the book recommendation. I’m a big reader; I look forward to reading it.
We live out in the country too. Do you have a little hobby farm? I will contact you via email to get your info for the listing on the site. Thanks for your willingness to help. You are the herbalist we could not find (until now)! 🙂
Awesome post!! I particularly love the line, “Healthcare providers should not allow their own lack of knowledge to magnify their patients’ fears” – so true. I hope that someday (very soon) all doctors will tell the truth about SB!
I think there are still so many unknowns about the link between folic acid (and the MTHFR mutation) and SB. I was not on folic acid (or even prenatal vitamins, yikes!) when I became pregnant with my first child (nonSB) as she was a surprise. I was on prenatal vitamins for years prior to my second child (SB). Go figure….
I did hear a statistic that the addition of folic acid to prenatal vitamins and higher amounts in food (it is added to a lot of bread, etc) reduced the incidence of SB by about 70%. This happened in the 1970s. This was also the exact same time that prenatal ultrasound became widely available. Thus, prenatal diagnosis of SB became available. And, statistics show that about 65% of pregnancies are terminated at the time of diagnosis (sad). So – who is to say that the “incidence” of SB was reduced by the addition of folic acid or by the termination of pregnancies?
Either way, I am also taking 4 mg of folic acid daily just in case of an unplanned pregnancy. I don’t think it can hurt, it might help, and until more research is done to prove or disprove the link between folic acid and SB, I think that all women of child bearing age should be taking prenatal vitamins (at minimum) and eat a diet rich in folic acid.
A Naturopathic Urologist at Bastyr suggested using Belladonna in lieu of Ditropan. He said Ditropan is based on the herbal use of the Belladonna plant.
He said that Belladonna is an antispasmodic that blocks the parasympathetic muscle receptors which prevents detrusor contractions (or something like that, ha!). Isn’t that the same thing Ditropan does?
I am very interested in the idea of it. From my research it appears to have the same properties or effects as Ditropan. In fact, they are listed as interactions on Drugs.com.
He said he would start with the tiniest dose and slowly increase the dosages. After talking to him and my own small town ND, I would totally be willing to try it with my daughter, should she ever need it.
I know you said it is potent and potentially dangerous. Do you have any thoughts on its similarity to Ditropan.
I’m SO interested in this.
UPDATE: Kelly, If you think that your answer could launch a new discussion about Belladonna & Ditropan, perhaps we should start a new post about this too? It’s totally up to you.
Under the care of a Naturopathic Urologist. That’s a whole different answer to the belladonna earlier question in that case. I do not suggest the use of belladonna UNLESS under the guidance of a health care practitioner – it’s not for lay people to use willy nilly. . Wow. How I would have loved a ND urologist. It sounds promising.
I know. I jumped up and down and did a little jig when I found him! Did I read that right??? Naturopathic Urologist??? N….D??? Not M….D???
He is on staff at Bastyr Naturopathic College & Clinic. I really really liked him. I would feel very comfortable with him overseeing our care with belladonna.
(FYI, he also recommended gota kola for nerve growth. Thoughts on that one?)
I almost wish Pooka needed it, so that we could “take one for the team”. I obviously don’t really wish she had spastic bladder or high pressures. I just really want to see someone try it. If it were to work, that would be SO AMAZING!!!
LOVE Gotu Kola. It’s nervine herb. So may applications. Gotu kola tea is can be drank warm or cooled and used topically – excellent for wounds scrapes or you could use it in powdered form & combine with coconut oil to apply… one of the most revered herbs in Ayurvedic medicine. There may even be a homeopathic form…
For interest sake:
Taken from Livestrong.com
Gotu kola, an herb in the ayurvedic tradition, may stimulate nerve regeneration, according to researchers in the Department of Neurology at Oregon Health and Science University in Portland, Oregon. An extract of the herb caused measurable growth in a tissue culture of human nerve cells. Researchers determined that gotu kola contains more than one active component. In a laboratory animal portion of the study, doses of 300 mg per kilogram of body weight per day of gotu kola resulted in more rapid nerve regrowth and function recovery compared to a control group that did not receive the herb. The study appeared in the September 2005 issue of the “Journal of Pharmacy and Pharmacology.” Consult your doctor about using gotu kola to treat a medical condition
Above article written by: Tracey Roizman, D.C.
I just wish Pooka was older than Claire so you could try belladonna first. 🙂
So I’m trying to get my head around this whole therapeutic massage thing. So the increased circulation causes healing and growth? I guess that makes sense. Sorry talking to myself. Ha!
WellspringHope, can you talk more about AromaTouch massage and paraffin wax treatments? Is AromaTouch the same thing that Kelly describes?
This post is getting so long. I’m wondering if we should start a new post for this leg massage discussion. WellspringHope, do you want to address my question in a new post? It’s up to you, whatever you think.
Here is my post! http://spinabifidanaturally.com/aroma-touch-technique-and-paraffin-wax-treatments/
Love your positive attitude! I tell people all the time that I know that God allowed SB into my life to grow me into a better person. It has been the most glorious thing, learning to lean on Him and also learning to look for the amazing miracles that happen each day. I love your story, look forward to getting to know you better through the forum here. I’m now off to research blackstrap molasses for bowels:)
So I see this term all over the archives of Baby Center, but I actually had no idea about any of this. I had seen the MTHFR acronym on Baby Center before, but I thought it was a genetic test done on the baby through amniocentesis and I had absolutely no interest, so I always ignored it.
Then my ND had my daughter’s take the 23andMe test that she recommends to all her clients (nothing to do with SB). Both tested positive for the MTHRF SNP. By chance when I got home from her office, someone had posted on a really old post that talked about this gene and its possible connection to SB. I had no idea. It was a total coincidence for me at the time. Before seeing the post, I hadn’t even recognized the test results as being the same acronym I had ignored on Baby Center. I saw it and said, Wha? OMGosh?
So all this to say, what’s the story with this test. I’ve read a bit about the MTHRF mutation, but don’t understand its connection to newly diagnosed SB moms. Do MFMs recommend the test? And if so, why? If you test positive, then what do they say/do?
My knowledge of all of this is very spotty at best but here is my best understanding: the MTHFR mutation means that your body has a hard time metabolizing folic acid (I think technically this is incorrect but the easy way to explain it) and therefore, the mutation would lead to a higher risk of having a child with SB. Taking more folic acid is not enough if your body can’t break it down.
There are different versions of the mutations. I tested positive for the C677T but negative for the A1298C. The A1298c is associated with heart conditions and other health problems. I know that c677T is the most common and least problematic, So, I am not sure if it had anything to do with SB in our case since I believe this mutation is very common in the general population.
My doctor still advised me to take metabolized folic acid (I really don’t think she has any clue whether I really need it). I am still unclear if I need to be taking it but do so just to be safe. In case I get pregnant, I took Neevo DHA for awhile but it is expensive and I recently switched to a regular prenatal, extra vitamin B (I think this has something to do with the absorption/break down of folic acid), and “Methyl Folate L-5-MTHF”, as well as the extra regular folic acid.
I really am still confused about it all so someone feel free to contradict me. 🙂
Thanks so much for the info! We have been told by our acupuncturist to keep Claire’s legs very warm and encourage circulation. One of the acupuncturists wears wool/knee high socks during the summer–I can’t imagine! We currently do Moxabustion and I do massages on her with tei fu lotion. However, I am really interesting in learning more about incorporating essential oils and the paraffin sounds awesome too–I’ll look at the links, thanks!
This is a fascinating post! I’ll be off to read that link later tonight. When we were expecting, as I was researching, I came across an old Time Magazine article where discussing whether or not it was humane to let children with SB live. An old article from the 80’s. which really isn’t that old! I had no idea there was all this back story.
Its no wonder we are still seeing so much negativity if the medical opinion was for so long informed by such an impoverished view.
Thank God for all our beautiful babies and all you wonderful mommies, shining a bright light into that darkness.
Oh, if you ever find that article, please send it my way. I want to fact check a few things I only found from one source, mostly foggy date ranges.
What an amazing read. The link as well. Thank you.
But why did you get tested? Was it because you got the SB diagnosis?
It actually means your body can’t convert folic acid to folate. So you are supposed to be taking “folinic” acid or folate or specificaly L-5 MTHF . My L-5 MTHF lists “folate” under the supplement facts.
And I think it is serious. I will ask my ND more when she gets back. But your body needs folate because it is used in the production of SAHM, which is essential to your body’s function in general. She had this big flowchart with so many circles and arrows that my head was spinning by the end. So I only have a spotty understanding as well. It didn’t help that her flight to Cambodia left at 5am the day after our appointment. Now I have to wait a month for clarification. But she made it sound very serious if you can’t get folate to make SAHM.
I was tested at with my OBGYN after I read posts (probably the baby center) and wanted to make sure I was taking the correct type of folic acid. I tested after Claire was born–I have not had her tested.
I think the only thing “to do” is just to take the folate. So, regardless of which mutation, you just take the extra supplement. If I’m missing something and your ND has more info, let me know. 🙂
Hi and welcome! My LO is only 13 months old so we have not yet been down the road of potty training and bowel/bladder continence. If you have not already, you might check out the bowel management section of this website, Baby Center Spina Bifida Kids (you can search old posts or post a new one – lots of mamas here with tons of experience with bowel management), and I know that Cincinnati has a great bowel management program where they get about 95% of kids regulated within a week. As far as constipation and laxatives, I can’t say enough about blackstrap molasses. I hated giving Miralax and was finally able to discontinue once I started molasses and fish oils.
Blackstrap molasses. I swear by it!!
Thanks for sharing your amazing story! Wow, you are such a great resource and I look forward to learning more from you. Love your website too :). Truly inspiring that you welcomed a special needs child into your already busy home. I look forward to hearing more about all of your precious children.
Thank you! I realize that upon reading my post, people are probably thinking, “That’s only 4 children. Where’s the 5th?” Haha! My oldest daughter is 12 yo, 18 months older than Lauren (11 yo bio daughter with SB). The boys are 22 months younger than Lauren, and Mira is my youngest at 7.
My daughter is almost 4 and is on senna and enemas. We are able to keep the stool soft enough through diet but still need the senna to bring the stool down the colon. In order to get the right stool consistency, we have to pay very close attention to diet. I know when she was 2 yrs. she was supposed to have 7-12 grams of fiber. I’m not sure the right amount for a 6 yr old but I imagine over 15 grams. However, for us at least, too much fiber is just as much of a problem as too little fiber. We steer clear of lentils, many fiber full granola bars, beans (one serving can be 7 grams–too much for one food!), etc. but also avoid constipating food. There is also a saying that goes, fiber without water equals concrete. Water is so important. It took us awhile to find a balance. She eats bread that has about 3 grams of fiber and eats several portions of fruits and veggies a day. We also switched to an organic probiotic that has 5 billion cultures–some of the main stream brands only have 1 billion cultures. I know other moms on here have tried several remedies–like Tracy mentioned the blackstrap molasses, aloe vera, fish oils, etc. I think these would all help eventually replace the miralax. I think it would be much harder to replace the senna because it actually moves the stool down the colon and in theory is supposed to help the stool all come out at once–something I don’t think food can do.
As your daughter gets older, she might find the peristeen more comfortable than a traditional enema because its only in for 30-45 seconds.
Sorry, I completely know how frustrating bowels can be! And gathering from your other post, you were just kind thrown into figuring all this out. Just don’t feel bad about any interventions you are using because your number 1 priority in to keep her unconstipated so her colon doesn’t stretch out. But, I think you should be able to wean her off miralax, it may just take a little time to experiment to get the right consistency.
A agree with both ladies. We use molasses and FruitEze but the FruitEze is more of a bowl maintenance thing and does contain fiber. The molasses works well. So does light Kayro syrup (I’m told) but without the extra minerals etc.
In your position, I would just move very slowly. Maybe even keep a diary of what you added and give that a couple days. Note the changes. Maybe back off the Miralax by half, wait a couple days etc.
We are much younger (almost 1) but hope to start with the Peristeen when the time comes. Might be worth a try.
Don’t feel badly. It is so tricky!!
I know Tracy weaned her daughter off Miralax and onto Molasses. Perhaps she could shed some light on how she did it. Granted her daughter is only 1, but still valuable information.
I love your story…sweet Mira! What country did you adopt her from?
Mira was adopted from Ukraine. The orphanages over there are FILLED with neural tube defects! In Mira’s baby group of about 10, at least 3 had hydrocephalus, 2 had Spina Bifida, and of course Fetal Alcohol was prevalent throughout the 100 child orphanage. It’s been so sad watching the news this summer, with all the mess in Ukraine. Places that we stood are now completely ravaged.
Ok, I’m on your doTerra site and I have a bunch of questions.
If I were to start massaging Tillian’s legs myself. What oil blend would you recommend? Kelly recommended rosemary, lavender, citrus & myrrh. What do you use? I’m going to have to look up tei fu lotion, Camilla!
Also, I own the Aroma Ace. This is what I used with the Thieve’s Oil to get rid of the mold after we flooded a few years ago. But I’m wondering how I could use it in a cost effective way to protect my family from sickness in the fall and winter months. I feel like it goes through the oil SO FAST! And doTerra oil is SO EXPENSIVE.
But the most pressing question of my day is. . . WHY DON’T THEY SELL EGG NOG ALL YEAR LONG??? She says as she sips her egg nog coffee! Ahhhhhh……
Tina, I just order the one bottle of AromaTouch (under the oil blends) since it incorporates basil, grapefruit, cypress, marjoram, peppermint, and lavender. I am going to look up that lotion also, since I’ve never heard of it!
Ok, so here’s my little secret, haha! I use the Greenair Vapor Spa Diffuser from Amazon. I think I paid $30 for it. I diffuse oils every day and have had this diffuser for a year now. I know the doTERRA diffusers are awesome, but not in my budget:) I fill my diffuser with water, and add a couple of drops of whatever oil I’m using. So just a few drops at a time, and we don’t go through the oil quite so fast as some people do.
doTERRA offers a wholesale membership for $35. There are no strings attached or quotas to buy, you can get 25% off your oils, AND the potential to earn free products. Most of my clients do this because once folks see the benefits of the oils, they want to keep them in stock and on hand for different issues. Here’s more info on the wholesale membership: http://www.wellspringhope.com/enrollsave/
We have a local farm that makes TO DIE FOR eggnog. I just don’t understand why it disappears after New Year’s. Probably because they care about my waistline. So kind of them.
Thanks for the tip on the diffuser! And the info on which oils. Thats nice that the aromatouch has a good mix of several–I’ll have to look into that.
MrsK, yes, a diary makes such a difference. We still journal and it helps significantly. When we’re struggling with senna dosage, I always go back to my journals and can also identify patterns, etc. And whenever I have to call my nurse for help, I have all the info ready.
Awwww……I’m all emotional now. I truly think that SB babies are the HAPPIEST babies in the world. Seriously. I’ve met some of my dearest friends today simply because my daughter laughed or smiled at them from across a library or restaurant. Love your story, love your hope and positive outlook.
I know Tspar puts it in her daughter’s formula. I’m curious if you do something else. I’d like to increase our dosage a an little, but formula isn’t an option. Z will actually take a good bit from a spoon, but not as much as I’d like. I mix the remainder in yogurt or what have you. But I’d rather not have everything she eats taste like molasses! 😉
What a wonderful story. I have followed little Z on Baby Center and now here – so excited to see her grow. And, I have to say, I am addicted to her curls 🙂
I have to agree whole heartedly that SB babies have something very special about them that attracts people directly to them. My first little girl, who is very cute/sweet/kind/easy, certainly got her fair share of people saying she was cute. However, Caroline literally attracts people from across the room/store/parking lot/playground. It is crazy – people will walk by other babies (who are also super cute and sweet) just to get to Caroline and say how amazing she is. I swear that when the spine does not close, an extra cute and sweet gene is magically turned on.
Hi all, so sorry for the short post earlier – it was late 🙂
Caroline was on Miralax for about 6 months (4 mo old to 10 mo old). I learned about emulsified fish oil and blackstrap molasses from TSpar. I transitioned Caroline slowly over about 2 weeks by cutting the Miralax in half every 3 days or so and adding the fish oils and molasses slowly during that time. She was not constipated at the time, but I could never really get her stools soft with Miralax (likely because I hated it and only wanted to give her a little….). Anyways, now her stools are perfect with probiotics, molasses and fish oils. I occasionally give her Fruit Eze too, but having trouble getting it in as she has been on hunger strike since having to be on antibiotics for a UTI 🙁
HOWEVER…please note that Caroline is only 13 months old. I am not concerned with continence right now. I know we will need to do something different (enemas, senna??) when we get to the continence stage. So, I do have some difficulty advising for the older kids. Just wanted to note that if you are looking for softer stools, then it is my experience that molasses works better than Miralax. And is a natural alternative. And I totally agree with the above advice that a journal is very helpful.
I certainly think the “dose” is going to be different for every child. Caroline is 22 pounds and gets about 10 mL of emulsified fish oil and 2-3 mL of the molasses (see below for links to the products I get). My goal is to eventually have Caroline readily drink this stuff on her own or be able to mix it into food, but for now I just make her an evening cocktail of fish oil, molasses, probiotics, d-mannose, Cranactin, her multivitamin and corn silk and give it to her with a syringe. It sounds totally disgusting, but it actually is not that bad – I refuse to give anything to my children that I have not already tasted (fyi, her antibiotics were completely disgusting), so I have also had tasted all of these things mixed together. It took her a while to like the molasses as it is a pretty strong flavor, but now she opens up as I slowly give it to her with a syringe. Pretty smooth. Caroline is breast fed and only drinks breast milk or water from a sippy cup, so I do not try to mix this into formula or any other type of milk product. I am hesitant to mix it into the breast milk in a cup just in case she does not like it and associates it with the milk, then won’t nurse or drink the large stock of frozen milk I have. I am toying with the idea of trying to mix it into water. I will let you know.
I hope this helps. Please let me know if you have any other questions!
Here are the links to the products I get:
Fish oil: we get the orange flavor, which actually does taste a lot like a creamsicle! http://www.amazon.com/Twinlab-Liver-Emulsified-Norwegian-Orange/dp/B001G7QG4K/ref=sr_1_2?ie=UTF8&qid=1414709296&sr=8-2&keywords=emulsified+fish+oil)
Thanks so much Tracy! I like the syringe idea.
I just wanted to add one thing.
The reason we buy *emulsified* fish oil is because it is more easily mixed into another liquid. This is important so you get the oil IN the baby, rather than coating the INSIDE of the mixing cup, bottle, syringe, etc.
Thank you all so much for your responses. We saw GI today and I ran some of these suggestions by him. He is all for us trying any of them. The one thing he warned is that the molasses gets absorbed by the bacteria in the intestines and can cause gas/discomfort. Anyone experienced this? Lili has chronic stomach pain already.
I really appreciate all this feedback. Gives me hope there are things out there that we haven’t tried yet and might just work! Thank you all!
You know, I have noticed that Caroline is a bit gassy, but only the last couple of days and she has been on molasses for a few months now. She does not act painful in her tummy, but is certainly too young to tell me. I was attributing her recent lack of appetite for anything other than breast milk to the recent antibiotics, but now I wonder…could it be stomach pain from molasses? Has anyone else experienced this? Maybe the only way to know is to discontinue and monitor for changes. Ugh…that would mean going back on Miralax 🙁
Well this is all very interesting!
I give Zelie (11 mos -26 lbs) a tsp of molasses daily. A very similar amount to what you are using Tracy. Our “regimen” is FruitEze (1/2 tsp) in the morning, and the molasses at night. In both cases I basically just spoon it in her mouth. The Fruiteze texture was a slight adjustment for her in the beginning, but she clearly likes it. The molasses is trickier. She’ll take a mouthful or so, but the rest ends up just getting mixed into her food. I just start feeding her and whatever remains on the spoon gets eaten up in the process. She’s getting more used to the taste, but still … too much is enough! 😉
Like Caroline, she’s only breastfed where milk is concerned, and gets a little water and/or diluted juice. I don’t have a stash even, (never been for me), so there isn’t a way to mix it in even if I wanted.
Now, as far as gas goes, I haven’t noticed any discomfort. She is, sometimes, a little gassy, but only a little and briefly. It doesn’t seem to last or to trouble her.
As I read all this I think before I “up” the molasses, maybe I’ll just add the fish oil. Tracy, you could back the molasses to half and maybe increase the fish oil for two or three days and see what happens. It ought to be enough to see some improvement, if there is improvement to be made, and still keep things running well. If not, its just a few days and shouldn’t provide too much hiccup.
This is so awesome. Thank you!
Since most of us have really young children just now, I really hope (and sort of expect) that there will be many more stories like this in intervening years.
Hey Admin! Is there a permanent place that we could build a library of links and info like this?
We are trying to decide the best link title for this type thing. Should each “famous” individual’s story go under SB news? Amazing SB Stories? Maybe we should have a sports link? Tomorrow we are going to watch a wheelchair basketball game in a nearby town. One of my daughter’s friends is playing. I haven’t been brave enough to sign her up yet, have you seen how rough those games can get? Whew! And no helmets! Augh. Haha!
You guys crack me up. We were actually in the grocery store the other day, pondering the “Pick Six” beer selection when I guy came up behind with lots of very helpful suggestions. (Works at World of Beer it seems). Anyway, at the end of the conversation he said he was there because he was looking for Eggnog. Loved it. Wanted some for the cool weather coming in and WHY oh WHY wasn’t it in stores all year long?!
I said… Make your own. http://allrecipes.com/recipe/amazingly-good-eggnog/
Oh yea… and thanks for the tip on the diffuser. Will have to check into it!
I actually made my own eggnog last year! It was good….but not as good as the local farmer’s. Thanks for sharing this recipe!
What a wonderful journey this whole “SB Thing” is! I have to admit I’ve looked (more than once) at Reese’s Rainbow scouring for SB babies. I don’t know that we would actually ever adopt. Just now I’m very sure we’ve taken on all we can fairly manage. But maybe…
So glad to have found you here. Thank you for sharing your story and your family and your knowledge!!
So interesting! Watching the advancements in spinal surgeries and issues through the past 10 years has been amazing. Keep doing those roll-a-thons and walks for spinal cord research, folks!
I remember reading something of yours over on BabyCenter about your sweet girl’s anxiety. Reading your story now that makes so much sense. What a rough experience and at such a rough age for it. Old enough for it to be really scary and distressing, but not really old enough to understand. Poor girls, the both of you!
I hope some of the suggestions on your Miralax thread will help.
Also wondering what you’ve been able to do for her anxiety, other than try to stay away from the doctor! Maybe our Wellspring Hope member has some suggestions with Essential Oils?
Absolutely. I have a couple of kids who struggle with anxiety, and I love doTERRA oils for calming and focus. Hospitals and medical environments can be frightening, especially when your memories involve being poked and prodded and inability of nurses to start an IV. Ugh. Lavender is great for calming and sleep, however it doesn’t always work on my daughter with SB who also has FAS and autism (frontal lobe damage). Roman Chamomile is her friend:) I also love diffusing Serenity Blend in the car or our home, and rubbing it on feet at bedtime before a big gymastic meet (for my typical eldest child) or before a long clinic day.
Lili sees a psychologist once a week and it has helped her get through the regular appointments and ultrasounds, but she’s still a wreck if anyone has to examine her private area or any ER or new doctor visit. We use distraction and calming visual techniques, breathing exercises. And we try to put her in control as much as possible, give her as many choices as possible. She even still freaks in OT when we have to put the biofeedback stickers on. We have been in contact with Cincinnati Children’s to try to go through the bowel program but they said you have to start with a contrast enema and the child has to be awake for it. So for now it is not an option for us. When I say she freaks, she FREAKS. Screams, cries, runs out of the room, hurls insults. It’s not pretty. I’m thinking it really is not going to improve much until she gets a little older and is more personally motivated to get continent.
I haven’t been tested. I’m not sure I will bother, but it is interesting. Especially, to my mind, for those of us who had several non SB kids BEFORE our SB baby. I read something that suggested that babies born fairly close together were at risk because you didn’t have the chance to rebuild stores of the stuff. I have no idea how valid that is, but my Littles are very close (barely 2 years apart) so maybe… And maybe that has nothing whatsoever to do with it, in our case.
I sort of agree with Camilla. If the answer is always to take folate, I’m not sure the test matters so much. ???
In any case, I also think it is funny that you say “your body needs folate because it is used in the production of SAHM”. In the online world I inhabit outside of this SB one, SAHM means Stay At Home Mom. I had no idea you needed more folate for that !!
And I dare not even tell you what I think of every time I see the MTHF abbreviation…
Did your ND give you some idea of a dose and methodology for the Goto Kola? Did you say that somewhere and I missed it?
Thanks for sharing! I’ll have to show Claire. We have a yearly SB camp and the families go with the kids until they are 8 and then they go by themselves. I get nervous thinking about 8 now even though its 4 yrs away!
I’m so sorry its taken me forever to get to where I could read and comment on all of these, but…
I’m so glad to see Caroline here! I’ve really enjoyed following along with her over on Baby Center too. Several us seem to have little girls about the same age, pity there’s so much geography in the way!
In any case, I’m glad to have you here with us. It’s the next best thing!
I also added a step-by-step explanation on how to upload a picture and how to make the text wrap around the photo in the How The Community Forum Works post.
Just uploaded from the edit feature on existing post. Worked!
Can you ladies try editing one of your comments?
Camilla says it doesn’t work in Chrome & Safari.
I tried it in Internet Explorer, Chrome & Firefox. I found it worked in IE & Chrome, but NOT Firefox.
What I mean by “doesn’t work” is that the window doesn’t close after you hit save. It just hangs there with the word Saving. . .
Some have reported login issues. Please let me know if anything strange happens when you login or out. Thanks!
We only use Chrome. Sorry. That’s not much help.
Actually that would be helpful because it worked in my Chrome, but not Camilla’s. Curious if it will work for you.
Ha, that’s funny. And I double checked and the “H” was all in my mind. Must be the stay at home mom brain! So it is just SAM.
I find it interesting that the best article I can find on the subject is on the Stop The Thyroid Madness website. I swear their is a connection between thyroid function, folic acid and SB.
Anyways, they describe our buddy SAM as follows: “Methionine is converted in your liver into SAM-e (s-adenosylmethionine), which is anti-inflammatory, supports your immune system, helps produce the breakdown of your brain chemicals serotonin, dopamine and melatonin, and is involved in the growth, repair and maintenance of your cells. i.e. a proper methylation pathway like the above is going to mean you will have a better chance in eliminating toxins and heavy metals, which can reduce your risk for cancer and other health issues, and put less stress on your adrenals.”
The article goes on to suggest helpful supplements, avoiding foods high in folic acid and warns against heavy metal toxicity.
This article pretty much sums up what I got from my meeting with my ND, which was that this gene mutation along with the others that showed up on my daughters’ tests put them at risk for all kinds of problems in their futures (including cancer) unless they are vigilant about supplementation. But like I said, this was not their only mutation or bad SNP.
The article is definitely worth reading, especially the second half which gives advice on how to best deal with this mutation.
Thanks for the info on the wholesale membership. I will definitely look into that.
And thanks for the egg nog recipe, MrsK. I just printed it. Your World of Beer friend is a wise, wise man.
I always buy quite a few brands and do a taste test to figure out which one to buy for the season. So far there are only 2 brands on the shelf and the Southern Comfort brand wins hands-down. The other one tastes like vanilla milk.
Poor baby! Of course she freaks out. What trauma.
Has your psych tried any hypnosis?
What about SB Athletes? Or even Amazing SB Athletes? Or SB Athletes in the News?
What do you ladies think?
I only have a second so this is the telegram version.
Tillian does not experience gas at all and she gets 1 Tbsp per day.
A thought on the molasses – perhaps we need to get in the kitchen and create some amazing energy bar made with molasses. Like a fruit and nut ginger snap bar. Just a thought.
Molasses just arrived…OMG it is thick and strong smell. How on earth do you get this stuff in your little ones?
Honestly, I just give her a spoonful. The rest gets drizzled in with yogurt etc. But my baby is really a baby. Lili is older, right? You might just tell her she needs to take it like medicine, and have some milk nearby to chase it with. ???
Yeah, it is pretty thick and kind of strong tasting. Start slow and work up to her “dose”. Also try to mix it into things – maybe even something really yummy like frozen yogurt to begin with?? My baby (13 months) takes it by syringe, but only when mixed with her orange flavored fish oil. She gags if I syringe it by itself and refuses to take it from a spoon like MrsK’s baby.
“Granola” bars for the older kiddos and then just simple ginger snap teething biscuits for the little ones?
We would have to carefully watch the fiber amounts and make sure there are no constipating ingredients to nullify the molasses and fish oil qualities.
It may not work, what do you think?
No, and she is out of the country for a month. And Dr. Yarnell hasn’t responded to my last email yet either. I will ask him then and report back, for sure.
I love the idea. Would the molasses retain all its potency if it were cooked? And if so, the information guess I need to brush up on my egg substitutes when baking.
What if we changed up the real stories section a bit? Make the main REAL STORIES not clickable like the RESOURCES.
Then the pull-down menu would look like this:
Then under websites we could add a section called CLUBS & CAMPS or something along those lines?
BTW, I’ve asked Kelly if she would write her daughter’s story. She said she would talk to her daughter. In addition I asked a Feldenkrais instructor to write her adult son’s story. Haven’t heard back yet. And lastly I ask the mybleedingink.com author if he would write his story. Haven’t heard back yet either. If anyone knows any other adults who would be willing to share their stories, please let me know.
Yes, that sounds great. I like dividing the stories up like that. I know of several more sports stories to add, paralympic athletes with SB.
OK, So I added a section to the WEBSITES page called CLUBS & CAMPS (I’m still open to changing that name) and I put Victory Junction and Disability Sports USA under that category.
And I changed the former Real Stories page to “Our Kids Stories”, but under the main category REAL STORIES. I want to add a Sports Stories page, but am torn between just letting people put up a post for each sports story that automatically gets added to that page, like the Our Kids Stories or the SB News page. OR I could put each one up myself and have it look more like the Physicians & Therapist page. But each person would have a description under their profile, like this one:
I could also have a form on that page for collecting new stories, like the way we collect new blogs.
I was wondering the same thing, but we could do raw dried fruit nut and seed balls all pureed up and sticky. Something along these lines:
No eggs needed!
I am very interested too. Caroline is not yet braced, but likely will head that direction at next SB clinic on Wednesday. She dorsiflexes both ankles and can stand somewhat flat footed on the right, but stands on her heel (foot in dorsiflexion most of the time) on the left. She does not have clubbed feet or roll her ankles. She has been standing with help/holding onto something since about 6 mo old.
TSpar – sorry, don’t mean to hijack your post, just wanting to learn 🙂
I welcome all hijackers! I’m a hijack-friendly poster! 🙂
I always tend toward the less bracing possible to allow the body to move the most naturally. That being said, Claire can not use only smos b/c they are not sufficient to keep feet unclubbed–to maintain the best position for clubbed feet, you would actually have to brace above the knee but I’m just not willing to do that. Also, she just needs more support. Her tendency is to bare weight on the side of her left foot (probably b/c she walked on it clubbed for so long and its still not in a perfect position) and the smos are just too easy for her to manipulate–she needs something stronger.
On MrsK’s post I said smos because I know Z functions really well and at times they thought she may not need bracing at all.
Traditional AFOS are actually similar to casts in the sense that they keep the foot in a rigid position and make it so that if there are active muscles below the knee, they atrophy. If I wore an AFO for six months, my muscles would be atrophied. So, if you have a young child (around a yr.) who appears to have some muscle below the knee, I would think that it would be best to try SMOs and to allow time to see how much they are able to use that area.
But, if you are really not sure which AFOs/SMOs, the safer option is definitely to get AFOs–since most all kids with SB do need at least AFOs. However, you can order a pair of smos from Cascade–they are called leapfrogs–for about 150 and just try them out. And esp. during the time around 1 yr. you may want to try several options and just see what works.
I will try to download that picture of Claire’s braces that I emailed you TSpar–but you know how I am with technology so you can post it too if you still have it. 🙂 But, you can see in the pictures that her new afos are shorter than her rigid ones. I think even having the afos a couple inches shorter, allows for more movement and I think allows the muscle the chance to work. So, you can always ask the orthotist for shorter afos. Since Claire’s new afos are thin, stop before the toes (SO important), cut back above the ankle, and shorter, they really seem like much less brace than her other pair (which she sleeps in to keep feet from reclubbing) even though they are both afos.
As far as fiber, if the balls are pretty small, it may not really matter. I would never give Claire a bowl of oatmeal but the amount of oatmeal in a cookie is not enough to matter. I would just make sure there isn’t so much fiber in that one snack, that you have to limit or cut it out of other areas of their diet. Caveat: Claire is fairly sensitive to food so maybe other kids could handle a lot more fiber than her but I would still look up the recommended amount for the child’s age and start with that assumption and then individual children may be able to have more and it not effect them.
That was so helpful, thank you. I will post the pic for you next time I’m at my computer.
Does anyone know if ped or PT can write scripts for orthotics?
Yes, both our P/T and Ped have taken turns writing the script for orthotics. Our orthotist actually tells our ped what is needed most of them time and he just writes it accordingly. Our Orthopedic surgeon is over an hour away at the children’s hospital, so we just use a local orthotist.
We see our doctor on the 12th, so I will let you know how it goes. Oddly, and fascinatingly, Z has gone from rolling her feet out, to a strange little pronation where her smaller three toes and part of the outer edge of her foot are off the floor. I suspect some of it may self correct with time, but still want her seen.
And yes, I’m pretty confident that your pedi can write the script if they and you are comfortable with that. I know some won’t attach least without guidance from a PT, but won’t and can’t are not the same.
I think crasins and orange (the fish oil) compliment nicely. I vote for almonds, just as a precaution for allergies. You could roll them in almost anything. Crushed Cheerios or even smashed pumpkin seeds. I think coconut might present a texture issue…
Please consider walnuts 🙂 Here’s why:
Source: Harvard Medical School Family Health Guide
“Which nut comes out on top? Almonds, peanuts, walnuts — each has its own association or board, primarily composed of growers and related companies. Of course health claims are a major selling point. So the associations sponsor studies of their particular nut’s boon effects on cholesterol levels, blood vessels, and other cardiovascular factors. Competing studies are difficult to compare. But the United States Department of Agriculture has a database of the nutrient content of individual foods that sheds a little light on the subject. Almonds have slightly more vitamin E than walnuts, and much more magnesium. Walnuts, stand out as the only nut with an appreciable amount of alpha-linolenic acid, the only type of omega-3 fat you’ll find in a plant-based food. Peanuts (which technically are legumes) lead in the folate category. Cashews have even more magnesium than almonds (83 milligrams per ounce vs. 73) but they lag behind in vitamin E. If it’s selenium you’re after — as many men are, because the mineral might protect against prostate cancer — then look to Brazil nuts: One ounce has almost 10 times the Recommended Dietary Allowance (RDA) of 55 micrograms. When it comes to taste, macadamia nuts are hard to beat. But they’re also high in saturated fat (3.4 grams per ounce) compared with other nuts”
They are synergystic and combine well with prunes…… 🙂
In Canada I purchase in bulk – cost effective.
Thanks Kelly, that’s good to know. Unfortunately, we are avoiding nuts over here due to allergy concerns. Not that everyone else couldn’t use them, but that is a perpetual factor over here. We haven’t demonstrated an nut allergy, but are anaphalactic to other foods and have a cousin who is equally allergic to nuts. Just seems like tempting fate. 😉
AND… I realized this morning what would make a good coating. Yogurt!
Sorry about that – from the earlier post above I thought nuts were being considered – ‘cashews/almonds’ for this potential recipe… my apologies 🙂
Powdered/ground flax seeds could be an option to roll these ‘fibre balls’ in…. practically tasteless but packed with colon benefits – aids/speeds up bowel transit time gently…
You weren’t wrong. There was some conversation. (And, walnuts are my personal favorite, btw!) I just was thinking out loud and trying to steer clear.
I love the flax seed idea! Far easier than yogurt..
So I’m still confused. Are almonds ok, but NOT walnuts? Is there some sort of potential allergy index when it comes to nuts, making almonds safer than walnuts? I’m just trying to understand. I could make a batch without nuts too and compare.
Our ND recommended ground flax seeds in Pooka’s first baby baby food. She had me make a beet, kale, flax seed mixture. I thought it was mild and nice tasting, but Pooka strongly disagreed! She prefers sweet potato.
My fault. I was thinking down the line of “almonds are seeds not nuts”. But, I went back and re-read something and it seems that while that is true, they still fall in the tree nut category for allergy purposes. So… I am going to say, since it is tree nuts that the cousin had such a bad reaction to, we are going to put those on the “wait” list.
Man. This allergy thing is a bummer.
Tracy & MrsK have you looked at the Sure Step SMOs? They sound similar to what Camilla was describing — open toes, thin flexible plastic, allowing for muscle development and a more normal gait.
I have seen them and done some minimal reading. They certainly seems like a good possibility.
I have had this thread on my mind since I first read it. Having a child with sb made many years of my life attuned to someone else’s colon. I laugh now looking back & my eyes well a tiny bit b/c I remember like yesterday what it was like to have to monitor & scrutinize these details of poop… how I wanted to avoid the dreaded stories of the constipation. Parents, I have to share the secret truth about what I found out through my jaunt down holistic lane with Jessie. It’s water. Jess had never had a constipation episode in any way shape or form (she’s 25 now). The docs insisted she must but she did not. From breastfeeding onward she was also offered water. In fact when switched to sippy cup, it was water always first. I watered down juice so excessively that it’s a family inside joke about how watery the juice jug is in all our fridges! (they’re 27, 25, 24 & 21 now) . It is the simplest, cost effective, most healthy thing you can teach your kids to do in my opinion for their wellbeing. It’s a habit they’ll need their whole lives. Btw, the best way to instill it is to do it yourself in front of them.. be a water drinker, make it the normal for them to choose H20 over pop, juice etc just like you do….
Attached article is long but so very good: http://www.naturalscience.org/fileadmin/portabledocuments/report_water_en.pdf
That was very interesting. Really. The section on cholesterol in particular to me, for no reason related to this board, but lots of personal reasons. And man, have I had the “Diet coke is not water, Mom!” argument many, many times. Sigh…
I’m not sure it is the total answer to neurogenic bowels, though I’m certain it is a big part of the address. From my (very limited, as in one baby that is not quite 12 mos) experience some of this is about restoring health to organs that were inundated with drugs and procedures at the very vulnerable, newborn stage. Water is obviously huge, but the probiotics and the FruitEze are a part of that for us too.
Also, I know that we went from free flowing bowls in the near extreme, to sluggish literally overnight, with the introduction of about 3 spoonfuls of yogurt. Now, we have never had true constipation, but that sluggishness began in a very well hydrated baby and took place in the course of less than 12 hours. When there is anything but water and breastmilk in this child, her bowls run on a 3 day delay. They just do. She still nurses much and often, as well as drinks water and water that has a half a splash of juice in it. (I never thought of doing the whole container. You are a genius!) So I think the water plays a big role in avoiding a problem, but without the other things it does not, for us, seem to be enough. I can move things along a good 24 hours faster (so from 3 days delay to 2) which also plays a very big role in preventing any genuinely problematic back up.
I’m so glad you are here with us. And I am TOTALLY sending this article to my Diet-Coke-is-My-Crack Mom. 😉
Oh yes, agree with you on all counts. Thank you for identifying what I missed conveying.. Water, healthful drinking of water is only the start for kids with sb. Everything else we do to assist by natural/dietary/herbal means are tools that work effectively when combined with a hydrated body. For instance, dehyrated herbals in capsules or powder form REQUIRE H20 in the body to become ionized or activated – or they simply have little impact. They are not able to provide the desired benefits. In fact, if fibre supplements are used without enough water consumption, they will in fact be very constipating. Water is a key ingredient to a healthy colon in any of us. Water consumption to a child with a painfully slow bowel transit time is just that much more desired. Thank you for welcoming me, it’s my pleasure. 🙂
1). I see what you are saying about the nesting. I use my iPad and desktop most of the time and my phone only rarely to read/surf. The nesting comes across nicely on the bigger devices, but not so great on the smaller devices. While people might miss a new comment posted, I think the nesting can make the thread a lot easier to read/follow overall and for anyone just starting to read it. I am somewhat addicted to organizing, though 🙂
2). I think I would have a hard time wrapping my small brain around new comments being at the top. I like them at the bottom.
Hope this helps. Whatever you decide, I will contine to love this site!! So much great info!
They do seem like a good possibility and something I will check into. We have SB clinic this Wednesday, so I will be asking PT for their opinion. I was originally told that AFOs would be needed in our case as her foot only dorsiflexes but does not plantarflex. However, we have been “walking” with her by holding her fingers and letting her move her legs in a walking fashion and I swear she is putting her feet flat on the ground most of the time. Wait and see, wait and see…that is the name of the game, yes? Oh…and always question everything and look for alternatives 🙂
I had the same issue with the nesting comments. I subscribed to a thread. Got an email that there was an updated comment and went to the thread (not via the email link) and couldn’t find it without some searching. I sort of lean towards not nesting them. And that, not only because it can be a little hard to find, but what happens if you want to make the 6th comment? Where does it go?
Once I’ve read a thread, it is nice to have newest at the top, but until I’ve read it that is frustrating. Also, if there have been a lot of comments since the last time it can be odd to try and figure out where I left off. Not that it is really any different than if they are at the bottom in that case, I guess. ??? If it could be a user preference, that would be nice.
I think it is awesome! On both counts.
What about some links to DIY ZZ Chair stuff? Very few folks are going to find their insurance paying. ???
That is a great idea, but I CANNOT find such a link. Do you know of one?
These are the ones we used.
Yes, ABM would definitely help with sensory issues. Thats sort of the beauty of ABM in that you can go for one reason but the work will effect many diff. areas of development.
If you went to traditional therapies, OT would handle sensory–not PT.
But, I do think its a little strange (merit, I know nothing about sensory issues) that its only on her left side. Does your older daughter think this just started happening or has she noticed it for awhile? Do you notice any other differences between her left/right sides? Is her strength in her right and left hands fairly similar? I don’t know if I would call neuro just based on what you said (it could be nothing!) but if you notice any other oddities, I think its fine to call the neuro’s office and they will just tell you if they think its nothing.
Well I’m only a little help, but as sensory issues go that seems sort of mild. And I know the “therapy” for such things is often just gradual and graduated exposure. I’m not sure I’d chase down a specialist yet, unless she does a lot more. Maybe just spend some time playing with her in a way that includes those touches, briefly and see if she begins to tolerate it. If she does, then try it with other textures – ball, cloth, glove, whatever.
Yay! I love making sure my kids have exactly what they need, but I do not love shopping around for it. I love recommendations from others!
Lanolin? I haven’t tried it on scars, but I know it is very soothing on other types of abrasions etc.
I found this quote on a really cool website, SpinaBifidaNaturally.com/gotu-kola. 😉
“In addition to its neurological benefits, Gotu Kola has long been recommended for the treatment of scars and has been used as a topical cream in a comprehensive scar management programs. According to pharmacological studies, one outcome of gotu kola’s complex actions is a balanced effect on cells and tissues participating in the process of healing, particularly connective tissues. One of its constituents, asiaticoside, works to stimulate the regeneration of skin cells and underlying connective tissue. In a study published in Annals of Plastic Surgery, gotu kola accelerates healing of burns and minimizes scarring. Observationally, it was found to improve scar maturity from an average of six months without treatment to three months with treatment.”
I had forgotten about lanolin– that stage seems eons ago. 🙂
Gotu kola–should have perused the website more. 🙂 a cream certainly seems like the easiest way to try it out….I’ll see if I can find some at my health store.
Search for Centella cream. Gotu Kola’s latin name is centella asiatica. The most common brand on Amazon is this one:
I’m going to buy it too.
This is a tough one. I just spent what felt like an eternity researching interview questions and feel more lost than when I started.
I think that sometimes the most interesting questions in an interview have nothing to do with the reason someone is being interviewed (in our case Spina Bifida), but with just interesting facts and funny stories about the person. Take this interview with Blaine Harrison as an example:
Only the last two questions were disability related.
Here’s an article on Six Ways to Ask Better Interview Questions:
This is mostly food for thought. I don’t have any questions to suggest as of yet.
I think MrsK would be really good at this.
I like the idea of an interview happening naturally also. Ask one question which leads to another, etc. I also love having non-SB related questions, especially because I feel like I am constantly having to tell folks how “normal” we are despite having 2 kids with SB. These non-SB questions can show that.
I ordered it–can’t go wrong for six dollars!
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What a great story! Claire, err Rosa Rainbow Sherbert, sounds just amazing. What a perfect personality – I bet she can light up a room! Thanks for sharing.
Here are a few ideas. I’m not very good at this.
Here are some SB ones:
1) What advice would you give to newly diagnosed parents?
2) What do you wish your parents would have done differently?
3) What is the most important thing you do to maintain your health?
4) What would you attribute your strength to during difficult times?
5) What was your biggest challenge in your school years?
6) What is your biggest regret?
7) If you could change one thing about the world what would it be?
Here are some fun ones:
1) Favorite book & why?
2) What would you do if you could spend a day anywhere with anyone?
3) Best thing I ever ate. . .
4) I get very angry at. . .
5) My dream job would be. . .
6) My biggest weakness/vice is. . .
7) . . .makes me laugh
8) . . .makes me scared
These are great!
Thank you, ladies. I will talk to Nikki about it on Tuesday.
In the meantime, her little boy fan club of three, has been instructed to be very careful with her.
Wow, these are all great questions – nice job TSpar!! I wish I had something to add, but don’t 🙁 Excited to see the interviews, though 🙂
I can’t remember her name off the top of my head but the lady who has spina bifida who is a neurosurgeon–do you know who I am talking about? She is so encouraging to me. Even if she didn’t do an interview, just having a link to her articles. I’ll see if I can find some….
Unless there are two of them, I assume you are talking about Dr. Karin Muraszko, who is listed at the top of the page. I love that she rides a Segway around the hospital!
Yep, thats her. Sorry, should have looked first!
I loved reading her story. I also love Segways:) If you ever get a chance to take a Segway tour, do it! Most fun date ever!
Just saw this. I was offline yesterday.
I think I’d like to know with regard to the SB itself is what matters the most as an adult? I think as parents of young children we are often caught up in all of the medical aspects that affect our children now. But someday they will be adults, and of these things will become part of the managed ordinary. What is it that we can have our eyes on for their future? What is it that we can do to help get beyond that perspective we have as parents of young dependents so that they can be independent, adults with full lives?
That is a very open-ended question. & I suspect the answer will be somewhat different from person to person. But it is something I think about all the time. I tend to be of the opinion that we are raising adults, not children.
Beyond that, I think the earlier questions are fantastic. I have no idea who we might ask, but I’m looking forward to discovering who you find.
Yes, I’m with you MrsK! Great question!!! I had that in mind also. I know already I have been able to offer counsel to parents of young children with SB, as a mother of a pre-teen with SB myself, as to what matters to us now, what we wished we had done differently. I’d love the thoughts of someone who has already gone through the stage we are at now.
Oh gosh! I have tried several times to read this and kept getting interrupted. I’m so glad I finished. Please tell miss Rosa that I hope she does grow up to be a ballerina nurse. How fantastic!! About the time she would be successful with that I’ll probably be old enough to be in a crazy old lady home. If I am I want her to come visit me!
OK, so I made two batches of cranberry orange molasses balls today. The second batch was much better than the first. Next time I would add more cinnamon and maybe more molasses. Pooka is asleep, but everyone else loves them. So it will be interesting to see her reaction. I think they have a great orange cranberry flavor. The molasses flavor is very subtle. As I sit here hands keep reaching into the bowl beside me and they are quickly disappearing. I keep warning them that they may later regret having eaten these as a snack. If they are gone before Pooka wakes up, I will make another batch with more molasses and cinnamon. Here’s the recipe I made just now. (This recipe has been revised to include the increased quantities of molasses and cinnamon. The original recipe was 2 Tbsp molasses & 1/4 tsp cinnamon.)
1/2 cup walnuts
1/2 cup cranberries
3 Tbsp molasses
1 Tbsp emulsified orange flavored fish oil
1 Tbsp flax seeds, ground (1-1/2 Tbsp ground)
1 tsp slippery elm powder
1/2 tsp cinnamon
ground coconut powder for keeping hands from sticking
I ground them all in the food processor until they began forming a ball.
(OK, they are already all gone and I’m not even done typing this email.)
Then I ground unsweetened coconut in a spice grinder and used it on my hands to keep the balls from sticking. Rolling them in the coconut gave them an overpowering coconut flavor, but the light dusting from my hands was perfect and made them so they were no longer sticky.
Well since everything is still out on the counter I will make another batch.
By the way, MrsK I was going to make a batch with coconut instead of walnuts, but after finding out how overwhelming the flavor is, I decided that would not be a good substitute. I’m trying to think what else you could use instead of walnuts? Sunflower seeds?
I’m so curious to see how this works. With the addition of the flax seeds and the slippery elm, this may be more effective with less molasses? At least that’s what I’m hoping. I’m so curious to know the results.
OK, so Pooka LOVES it. I mean LOVES, Loves, loves it. She would have eaten it until she got a belly ache if I let her. But she transitioned right into sweet potato without a fuss, which was great! My fear was that she would get a sweet tooth and not go back to her other foods, but no problem there at all.
She wouldn’t eat the balls by herself, so I just fed it to her with a spoon instead of rolling it into balls. Way easier too!
This batch had 3 Tbsp molasses and 1/2 tsp cinnamon and the taste and texture was pretty much the same. (I have edited the recipe above to reflect these changes.)
This is excellent! I have a very busy week ahead, but hope to try maybe over the weekend.
I can also highly recommend Imortelle by doTERRA. I used it on a facial scar left from removal of skin cancer, and have used it on my cesarean scar. Within 2 weeks of starting the roll-on, my scars flattened out (no more bump or ridge) and the redness is gone. Folks don’t even see my face scar any more. It’s expensive though, even with a wholesale membership. I love it. I am a wellness advocate with doTERRA, just FYI. you can buy it here: http://www.mydoterra.com/wellspringhope/ and learn more here: http://www.doterratools.com/skin-care/immortelle-blend/
Awww……Rosa Rainbow Sherbert sounds like an amazing character. We need more people like her on this earth. Club feet are difficult. I am so thankful for our orthopedic surgeon, I truly believe he is the reason Lauren walks today. Mira has one foot that was SO bad (pretty much upside down), and she will never walk for a number of reasons, but thanks again to our surgeon, we can at least get shoes on her. I feel your pain! It can be a long process!
I should probably clarify that I have 2 daughters with SB, otherwise the above doesn’t make make sense and could be confusing. Lauren is 11 and is our biological daughter who received world-class care from birth at top hospitals in the nation. Mira, we adopted from Ukraine where she received little to no care for almost 3 years. That first 3 years is important!
Yes, if Claire didn’t have surgery and braces, she would essentially walk on the tops of her feet–which makes it so heart breaking to think of kids in other countries who don’t have access to those interventions. I think its awesome that your family decided to adopt Mira. My husband and I have talked in depth about adoption in the future but feel we need to get past these next couple yrs with Claire first.
I’ll look into the Imortelle–thanks for the suggestion! I feel like it helps to switch up different remedies so I like to keep several things in my arsenal. 🙂
Ok. Yesterday was the day we went to see our Ortho.
Basically he said that we had no real reason for concern regarding her feet. Yes, she’s placing them oddly. Yes, maybe she would get some benefit from bracing. But not bracing won’t do any harm. She has full range of motion and can lift and bend her legs in all the right ways. If her ankles prove to be a real hindrance somewhere down the line, they can always be braced then. He wondered if our PT was being pushy about braces. (She isn’t.) His comment was (with regard to walking) “She’ll have a totally normal life”.
He told us to expect her to be 2-3 before she really walks. That’s something we were already anticipating. He also wrote a script for AFOs saying that if we can get them for free or nearly free it wouldn’t hurt to get them and use them occasionally as learning tool, much as you described, Camilla. But! If they were expensive, if we couldn’t get a second pair in a year as she grows, his advice was don’t bother, or at least wait another 6 months or more until she was bigger. It won’t be worth it and it will be expensive and challenging.
He brought up SMOs. He said they were preferable but he also was very confident (he’s got about 30 years experience) that they simply would not be able to make them to fit her tiny, tiny, tiny feet. (Her little feet are about 3 inches long.). He likes the Sure Steps. Maybe later, when they can be properly sized.
He saw no need for any equipment of any kind, from his perspective and was in favor of letting her grow as she is, giving her time to stand as we can and just allow her to develop as naturally as possible.
His office is going to call Hanger here and they will call us. We can see about the braces and the cost that way. In our conversation in the car hubby and I both agreed we would take his advice. If they are free, great! If they cost much more than a small co-pay, we won’t bother.
I’m pretty pleased with that.
Thanks for the update; sounds like a very encouraging appointment! Glad you and the doctor are on the same page–it sounds like he is taking a balanced approach that fits well with your perspective on letting Z advance naturally.
Wow, that is great news! I love it. Good information on tiny feet and SMOs. I was going to ask our local orthotist if he could fit her for Sure Step SMOs, but perhaps we will have to wait.
Keep us posted on the AFOs.
I thought it very interesting that he found her little feet too small. We just got today a pair of the Tsukihoshi shoes in an 18. Its the smallest they have. They go on and stay, but they really are too big. Still, for now, they offer some support and I’m impressed with the shoe and expect to get a lot of wear from them.
I also think that it was interesting that even given how well he expects her to do, he STILL didn’t expect her to really be walking for a couple years. I find that so telling about the condition over all. Its so hard not to at least wonder (never mind the occasional worry) about how that will all work out. Nice to have someone on our team whose experience can really inform the “long view”.
Have a great weekend, ladies!
Great update!! I ordered the Gota Kola cream on Amazon too – it is on the same boat as your product 🙂 I will be using it on Caroline’s back and will keep you posted. I might also try Class IV laser on her scar – I will make another post about that.
I am glad to hear about the molasses balls! Caroline is a terrible eater since her whole antibiotic disaster, so I have been hesitant to try anything new, but will be trying these this weekend for sure. Thanks for the reminder (oh – the link to the recipe in this post didn’t work, I had to go back to the original post to find it).
Also a good reminder about the essential oils – I will be following this post to see your results and may jump on board too!
Have a great weekend!
Ha, same boat. That made me laugh!
I just fixed the link. Thanks, Tracy.
I’ll be looking for your Class IV laser post. I think my MNRI lady used that on Pooka’s feet. I’m going to have to email her and ask if that is the name. I didn’t pay much attention or ask her much about it because I came with a list of questions about MNRI and was trying to focus on that.
Wow, my book on essential oils just arrived and I tried to look up Helichrysum, but it wasn’t there. Then I found it under Imortelle. So I guess it is also known as Imortelle or Italian Everlasting. I remember Lydia recommending Imortelle for scarring, which made me wonder which oil my CranioSacral therapist had told me about yesterday for scarring. She said it was AMAZING! She said it works on new scars and old scars with dramatic results. I just texted her asking which oil and sure enough Helichrysum. Ha!
This is SO interesting. Because just like gota kola, helichrysum is recommended for both nerve growth AND scar treatment. This is all so fascinating to me.
By the way, the essential oils book has a small section on Spina Bifida, which is shocking because Spina Bifida in almost never listed as a condition in the books I read. Down’s? Yes. Cerebral Palsy? Yes. Spinal Cord Injuries? Yes. Spina Bifida? Never!
I’m going to put the book in the book section later this afternoon, if anyone is interested. It’s called The Complete Book of Essential Oils & Aromatherapy by Valerie Ann Worwood.
I’m interested in this book, haven’t read this one, I love the Modern Essentials book which lists each oil and it’s uses, as well as listing conditions. I do love Imortelle, which is a blend of several oils, and Helichrysum is a GREAT oil. We have used them both for healing and scarring.
This is the one my MNRI therapist uses. It all sounds very interesting.
This site says it “promotes nerve growth.”
Not sure if its quite the same thing but we use a laser touch one: http://www.lasertouchone.com/
I use it primarily on Claire’s feet. It does help with loosening them and I can tell a difference immediately after using it but for us has not been dramatic/long lasting results. I also use it on her tight hips. As I mentioned on the other post, she does have scars from her surgery but I’m not sure to what degree they would be worse if I didn’t use the LTO. Overall, I’m glad we use it and I think its worthwhile but I’m more hoping more is going on beneath the surface (breaking down scar tissue) than I can actually see. I am a little nervous using anything with estim on her back scar because when I asked her neurosurgeon about it, he said the stim could travel up her spinal cord to her brain–that was enough to deter me!
I’ll have to try the Helichrysum as well–sounds promising! I have not received the gota kolu cream…I think its not coming until Dec! Since P is having rabbit pellets, you may want to seriously consider giving her something to really clear her out. If she is starting with pellets, its going to be really hard to tweak the recipe/just add more water to get her back where she was. Even if you are not ready to get on senna for the long term, one dosage may clear her out and then you could go back to tweaking the natural solution. I always lean toward the side of intervening too much as opposed to too little b/c a non-stretched out colon is necessary to long term continence.
The kids and I have been enjoying egg nog as well….we’ll have to try Southern Comfort. 🙂
I should also add that the child psychologist suggested medication and I turned her down. I prefer to try natural methods before pursuing anything unnatural that affects the psyche.
Camilla, I definitely hear you on leaning toward the side of caution. The reason I wasn’t too worried is because she was having lots of rabbit pellets, multiple times a day. I tweaked her formula and made an effort to get more bottles in her daily schedule and we are back in business. She is eating a nice variety of foods and having anywhere from 2-4 BMs per day. I feel really happy with her progress. Tomorrow is the first day of her next ABM intensive! Yeah!
What carrier oil do you use for the Helichrysum and what ratio? How often are you using it?
Very interesting to read. I have an older (20) daughter, no SB, who is significantly impacted NonVerbal LD that shares some of these characteristics. Its never occurred to me to try EOs.
I’ll have to think a bit about this, but may have some questions for you later.
Thanks for sharing!!
You are welcome to ask me anything! Our sense of wellbeing and cognitive function are tied into our sense of smell, so aromatherapy might be a big help for your daughter. I’d love to talk to you! Not just to share my experience but to sit at your feet and learn more from YOU about parenting a non-verbal child. I know you can encourage so many parents with your story.
You are so kind to say that. You know, the NVLD has been rough at times, just because its not a well known dx. I’ve told my hubby, more than once, I’m grateful that SB is so OBVIOUS. No one can tell me they don’t think there is really a problem…
My daughter is pretty severely affected. More than most that I know of. But it has been a blessing in its own way. You certainly learn to think about things differently!!
Right now, I think the big thing for her is sleep. And maybe concentration. We are in a big transition period for her. And those are the two things we struggle with the most. She doesn’t sleep well (never has and we’ve tried all manner of solutions) and she’s so, so, so easily distracted. She’s looking for work these days with the help of some good community support services, and I’d bet improving those two things would make a difference.
Any suggestions you have there would be much appreciated. And feel free to ask me anything!
What sleep helps have you tried? Do you diffuse essential oils at all? Lavender works for most people, but for Mira (my youngest has FAS, Autism, and hydrocephalus) we find that Roman Chamomile works well. Also Cedarwood is a great sleep aid. Frontal lobe damage somehow changes the effect of Lavender….well, the damage itself causes lots of issues, sleep included:)
We’ve tried lots of things, but not diffusing oils. Its something I just didn’t know of/think of until I saw you mention it here. I put a diffuser on my Christmas wish list and plan to start very shortly one way or another.
We did try lavender on pulse points and in bath water. Nothing. But I will certainly see about the Roman chamomile and Cedarwood. (My hubby will LOVE that.)
Interesting about frontal lobe damage and receptivity to the lavender. Not exactly surprising, but very interesting.
You said: “She also takes much longer to do chores and activities and often forgets what she is supposed to be doing. ”
OMGosh, I think all my kids might have SB!
No, all jokes aside, this is such helpful information. I’ve already been thinking about needing to find more full-sensory curriculum for use with Pooka. Do you have any recommendations? Especially for math!!!
P.S. Jesus from My Bleeding Ink (who has agreed to write his story for our Adult Stories section) has a point on NVLD in his “Everything You Ever Wanted to Know About SB” post. Scroll down to #26. This was my introduction to NVLD and that this was something we needed to consider for our future.
You made me laugh. It is funny because for the longest time we thought Lauren was just our lazy child. Then we started putting two and two together and realized she was struggling in a very real way to accomplish things. Yes, Bleeding Ink’s list is SO good. I shared it on FB a while ago, so family members would understand, especially because the LDs aren’t so immediately noticeable. For math, I highly recommend anything with manipulatives, Math-U-See is a good one. Colorful workbooks are important also. I love Saxon, but the books are black and white and BORING. Horizons math workbooks are fun.
Let us know how it works if you try it. We don’t struggle with constipation since the MACE procedure, but I know doTERRA’s DigestZen works wonders on typical kids. Wonder how it would do for a child with more limited bowel movement?
Look what arrived today. Apparently it came from Thailand, not China. I like the string!
Oh, and you can now put images in your comments. Yeah!
I haven’t used the cream or the oil yet, @TracyDTP. I had one. crazy. week. BTW, the helichrysum was $100.00 for 5ml. OMGosh, I almost fell over.
I think I’m going to use Avocado Oil for my carrier oil because I already have some and I try to use the things I’ve already purchased before buying something new.
Here’s what Kelly says:
“That is a good choice of EO. The thing with EO’s is they always work best in combination with with a couple of other synergystic eo’s . I would use it in combination with : lavender, lemon (something citrus) rosemary, possibly bergamot…. use a really good carrier oil like avocado or shea butter or evoo…. take about 4-6 oz of carrier oil, add say, 2-3 drops of each eo and shake well. Add a couple of extra drops of lavender oil to your final mix. Try the combo somewhere on Pooka’s skin – make sure no reaction. Use every day – before bed a very good time to do this – try to always end a massage for her by stroking/massaging upward toward upper body – also there is a really good method of gentle massage on tummy/colon area to encourage bm’s – it’s very good to include that in your routine as well. Anyway, those are my thoughts on that.. Also buy the expensive essential oils. They ARE worth it.”
So here’s my dilemma — I’m not sure I’m willing to spend any more money on these spendy oils right now. I have all her recommended oils in NOW brand.
Mix my doTerra helichrysum with NOW brand oils or use alone?
So we just got home from the first day of this month’s ABM intensive. Pooka was more fussy than usual, which made it exhausting. But I’m writing because my ABM therapist told me she had heard about something similar to our molasses balls. She said they are called, “Poop Balls”. Ha! I can’t find anything about them online, but I thought that was funny.
I took a picture of my “Poop Balls” in my cute little glass baby food jars this morning. Aren’t they cute? The jars, that is. . .
Kelly mentioned doing this in her recent email to me, which I posted in a comment under my Pooka’s Update post. I’m going to go look up what oils are in that.
Ginger Rhizome/Root, Peppermint Plant, Caraway Seed, Coriander Seed, Anise Seed,
Tarragon Plant, and Fennel Seed
I’m so torn on this oil thing. I have So Many NOW brand oils. And they worked so great at eliminating the mold in our house. And they work so great for headaches, burns, fungal infections, and so many other ailments. I’ve been so impressed with them. I’m so tempted to force myself to use them up before buying the same oils in therapeutic grade. IDK!?!
@Camilla, my ABM therapist showed me her Laser Touch One. I was surprised how small it is.
She said that in addition to using it on her son with CP, she uses it on the whole family for strains and pulled muscles and tightness. Have you tried it on those types of things?
Now is the cold laser considered estim? I thought it wasn’t?
I meant to reply to this when you posted it. Been a very busy few weeks!
I don’t have any experience with it for people. I should say that first. But…
We have used for a pet with a chronic condition. Its been disappointing. It certainly makes her feel better in the moment and addresses inflammation. Unfortunately, all results are temporary and all symptoms return pretty quickly. We went out of town and left her with the vet who treated her daily for a little over two weeks. Within 10 days you’d never know it…
For acute injuries I think it works small miracles, but for our kids I don’t know that it be more than a small tool.
I’d use them. Or at least try them and see. Or maybe just switch out one at a time, whatever one is mostly used up. ???
Yes, the LTO is estim–maybe considered tens, not sure. I have not really used the LTO on the rest of the family simply cause I have not really had reason to. I have used our Empi units on our backs and it has really helped my back. The thing I like about the LTO for Claire’s feet is that since it is so small I can get in the grooves of her feet whereas, that isn’t possible with the empi. I agree with MrsK about it not being very long lasting. For Claire’s feet, I view it kinda like the effects of massage, if I stopped massaging/stretching her feet for a week, her feet would completely stiffen which is why I do have to massage twice a day. With the LTO, I am just trying to get her feet more flexible at the start of the day.
My very first thought is gluten.
But before you think I’m crazy, I have to tell you that I am NOT one of those people who believes that EVERYONE should stop eating ANYTHING.
I believe that God created all foods for our health and enjoyment. But foods have been affected by the fall too. If we were to stop eating imperfect foods, we would have to just stop eating.
I’ve heard arguments why nobody should eat this food or that food. Pork & shellfish – bottom feeders that eat garbage. Fish – wild or farmed? Farmed eat their own waste. Wild are contaminated by pollutants & heavy metals. I have a friend who won’t touch beef and I can’t even tell you why. Our family as a whole eats everything. Well, except oysters. OK, I lied, nobody should eat oysters, but that has nothing to do with health, but sanity! 😉
So back to gluten. I have a friend whose son struggles with terrible eczema and it goes away if he goes off gluten and comes back if he eats gluten. He can tolerate a little once in a while, but if they attempt to reintroduce it into his regular diet the eczema returns with a vengeance.
I wanted to give you some website links, but there are too many good ones. Just google gluten & eczema. Eczema is also linked to dairy. But I lean toward gluten because of it’s role in leaky gut, which causes inflammation, allergies & autoimmune responses.
Dr. Mercola has a ton of articles on both causes and remedies to eliminate the itch.
Hope this helps.
@MrsK, I just posted about gluten over on your Eczema post, which made me think about your older daughter.
You know the story about my older daughter’s autoimmune condition. One of her doctors struggles with autoimmune problems that manifest themselves in very similar ways to her own. Well one of the problems is sleep. The doctor uses a mixture of essential oils on her wrists before bed, which works wonders for her. But it does NOTHING for my daughter.
Through trial & error, we discovered that gluten is the culprit. I’ve never researched it to see if it is common or why, but it is a direct correlation for my daughter. When she eats gluten for a few days, she will stop sleeping for about the same amount of days.
OK, I just googled it. Ha! Sounds like my daughter has lots of company. Interestingly the Livestrong article links gluten & insomnia to a B12 deficiency. Wow!
You know that we recently did some DNA testing and found out that both my daughters (and probably me) have the MTHFR defect. I’m starting to find so many connections between folic acid/folate and other things. Now this. I can’t wait for my ND to get back from Cambodia so I can ask her SO MANY questions.
Sorry, I got off-track there for a minute. I know gluten has been linked to both behavioral & learning problems. Your daughter might try eliminating it from her diet for a few days to see if it clears her head and helps her sleep.
Has she ever been tested for Celiac?
I don’t think that gluten is the culprit, but I haven’t ever actively ruled it out. I’ll talk to her about it. It certainly can’t hurt to try.
Any idea how long it would need to be out of her system to really be determinate?
So, there is a blog I’ve followed for years. The author just recently adopted a daughter from foster care. Yesterday she posted this. http://fosterhood.tumblr.com/post/103332783150/a-bit-about-clementine
I loved her perspective and, though it isn’t NVLD, I thought it appropriate in general.
Hope you enjoy it.
Check out the bottom of this article. It lists symptoms before and after eliminating gluten.
From what I read in just one place about 50% of people experienced improvement in 3-4 days. The other half about 2-3 weeks. This is just me eyeballing the responses in a long forum I was reading.
You could also just have her tested. Not sure what exact test they run. I want to say you can test gluten allergy, but then the celiac test is something different. But I don’t know for sure.
If it was me personally, and I was skeptical, I would probably just give it a week and see if I saw any improvement. If I was more convinced I might give it 30 days.
Thanks!! I’ll talk with her more in a bit. When they’re really grown, you can’t just enforce it. We will see what she thinks…
And this! http://niederfamily.blogspot.com/2014/10/false-negatives-evaluations-of.html
Holy cow. I love this.
Edited to say: I know that the child in this blog IS nonverbal, and NVLD kids are verbal. It still speaks clearly to me about testing and the experiences we’ve had with my daughter’s inability to interpret the subtleties and presumptions that tests and their administrators have. This has been particularly true in the “Public” domain. Private school. Private therapy. These have been better.
My nephew and a baby cousin both struggle with eczema. My boys have it mildly but they also have asthma and ezcema and asthma often go hand in hand. Anyway, I swear by Miracle Cream. Here’s an article and recipe: http://www.modernwellness.com/?s=miracle+cream I keep this made up at my house. I have also been known to run it to a friend’s house for different skin conditions. Let me know if you try it. I love Frankincense, it makes everything work better, but it is pricey. When I can’t afford it, I make the cream without it and it still works great.
Thanks!! I might just try that this weekend. Poor little guy! Itchy hands is just maddening.
Tspar, I plan to give the gluten a test too, but probably not over the holiday weekend. At first I thought it might be milk, but that is definitely not the culprit.
He’s actually doing a bit better. I hate using the benadryl, but it really seems to make a difference at night, and enough sleep has such an impact on everything, including this!
I know several of you have talked about buying essential oils, and of course you know I am big believer in doTERRA’s products. I am running a special this weekend if anyone is interested. I love getting free stuff, plus saving 25% on all my essential oils and doTERRA products. Here is the link to my FB page so you can read the promotions yourself. Let me know if you have questions. Wellspringhope@gmail.com
I am so sorry to hear that you have received this shocking news. I know it’s not what you were expecting or hoping for. I was 20 weeks when we found out about our Lauren’s Spina Bifida. We were nervous and scared, not knowing what it all meant for us or for her. It has turned out to be the biggest blessing in our lives. We have since adopted another child with Spina Bifida. They both have shunts to take care of the fluid on the brain (hydrocephalus) and are doing AMAZING. Lauren walks with walking sticks and is very independent and smart and beautiful and talented. Mira’s birth mother gave her a rough start (smoking, drinking, prostitution, drugs), but even with all that, we have made great strides and she is very smart high-functioning. She does use a wheelchair for mobility. I am inspired and blessed EVERY day my girls. You are welcome to email me any time, email@example.com
I’m so glad you found us. You’ve come to the right place! We have ALL been in the same boat. And we understand what you are going through right now. It was the worst day of our lives, for sure. I still remember every detail vividly.
I have so many things to tell you; I don’t know where to start.
Let me start by saying that it only gets better from here. Diagnosis Day (D-Day) is the absolute worst. And the NICU stay is pretty hard too, but in a different way. And the first year is pretty busy, but after that things settle down and become pretty darn normal, at least from my perspective. My daughter is much more similar to the rest of my babies than she is different from them. She’s smart, adorable, hilarious and gets into a lot of trouble. Right now I hear her babbling under the stairs, probably getting into something and making a mess. Yep, she’s gotten into a package of wipes and then smiled at me when I found her.
I can’t imagine our lives without her. She is special and adds so much joy to our lives. She’s special, not because she has “special needs”, but because we are all rooting for her and want to see her succeed. Her milestones are more special than they were with our other children because they are things we were told she may not do. So when she accomplishes them, it is a time for celebration..
I’ve heard so many moms say that they wish they could go back and tell their pregnant selves not to worry so much and to enjoy their pregnancies. So since you can’t do that to yourself, I will do it for you. Enjoy your pregnancy. Buy some special items, decorate your nursery, plan your baby shower. Enjoy it. You’ll regret it if you don’t.
Regarding your diagnosis. From the very little you’ve shared, I would say that your diagnosis is not consistent with your prognosis. If your child’s defect is truly at the base of her spine then she has very high chances of walking. In fact, here are the stats:
In a 25-year follow-up of 71 patients treated at birth in an aggressive, non-selective manner… 93% of patients with a sacral lesion ambulated 100% of the time. So if your daughter truly has a sacral lesion S1-5, she has a 93% chance of walking.
My daughter has an L4-5 lesion and has met almost all her milestones. She rolled over both directions and crawled on time. She missed her sitting milestone, but not because she couldn’t sit, but because she refused to sit. We have 5 other kids, so I think she just preferred to chase them around. She just started sitting on her own a few weeks ago right around her 1 year birthday. She has no mental delays. To be honest, her biggest challenge BY FAR has been her clubbed feet. You didn’t mention clubfeet. And if your child does not have them, consider that a blessing. It’s not so much that it will affect her in the long run, it’s just that the correction protocol is such a pain in the butt and our doctor is so far away.
Regarding bowel and bladder, these are challenges, but almost all individuals with Spina Bifida can become bowel and bladder continent.
We are Christians and took our diagnosis as God’s will. God chose our daughter for us. And we vowed to do the very best for her and for Him. And we created this site as a way to help others.
We all have health problems of some sort. And those who don’t should consider themselves very blessed. But I don’t find my daughter’s challenges any worse than some of the other problems our family has encountered over the years. So she may have to use a catheter and leg braces. At least she doesn’t have cancer! My older daughter was diagnosed with an autoimmune condition when she was 10 and suffered much more than my daughter with SB has ever suffered. You take what you are given and you make the most of it. But SB certainly doesn’t make life not worth living. And if you don’t believe me, hear it from the words of an adorable 10 year old who uses a wheelchair:
We are just a little group here on SBN, but there is a much larger group of moms over on Baby Center. Most of us are members over there as well. Here’s the link to that group too.
Please let me know if I can answer any more questions or help in any way. I will be praying for you.
Welcome Hannah. And congratulations on your new baby!
I can only echo what the ladies above have said. You’ll get lots of the same sort of advice over on BBC too. Its a great bunch over there.
The truth is we have ALL been in the same boat as you are. And while it is a bit of a bumpy start, its been worth all of the worry and struggle.
The best advice I can give you is this –
1. Remember you are carrying a BABY not a diagnosis. So many people are going to be hyper focused on what’s “wrong”. Your baby needs you to be the voice of all that is right, which is 95% of everything.
2. Listen to the advice you get about taking care of yourself. Be patient. Be kind. Be careful with and to YOU. You have a big job growing a baby. Ask for help and take it when it is offered.
3. Learn from the other mom’s about what doctors to talk with. Read. Research. Ask questions. Don’t panic. Don’t waste your time on negativity. You only have a few months to get ready to meet your sweet baby. Make the most of it.
4. And this is very important, do NOT confuse difference with disaster. Your child might not end up using the toilet the way you do, but that doesn’t mean they won’t be able to be clean and in control of their bodily functions. They might not walk all the time, but that doesn’t mean they will be dependent upon others to get them places. The truth is, your baby has as much chance at a full and fulfilling life as any other. Just because they may have to approach it differently doesn’t mean it will be some how “less than” a “normal” life.
5. Finally, remember that this is all they will know. It isn’t something they used to do, and now they can’t the way it would be for you if you were in an accident and suddenly lost an ability you’d always had. This will be completely “normal” for them and not a loss they will mourn.
It really all gets better from here. There is an amazing amount of support for you here in Internet land. Take it. Ask anything and everything.
Then take a deep, deep breath. You can do this. You will LOVE this before it is all over.
Welcome to the new you!
Hi Hannah! Welcome to our group and congratulations on your pregnancy!! Diagnosis day is the absolute worst, lowest point of spina bifida. I am not a person that cries very much or very often, but I think I cried more in the days and weeks following my D-day (which was May 2nd, 2013 at 2:45 pm…I remember every single moment) than in my entire life combined. It is ok to cry. It is ok to be sad. It is ok to feel whatever you are feeling. But please, please realize that your baby is going to be amazing. Enjoy your pregnancy. Find a good neurosurgeon – they are the experts on spina bifida. Be very wary about listening to OBs and MFMs. They might mean well and are usually nice people, but are very undereducated about SB. Especially in your baby’s case – a very low lesion like you describe has an excellent prognosis. Don’t let anyone scare you about the hydrocephalus and try to not pay attention to the measurements. I was obsessed with the measurements – they really, really don’t matter at all while baby is inside you. Everything can and will be managed once baby is here!
My baby has a L5-S1 lesion. She does not have a shunt, but instead has her hydrocephalus managed with an ETV/CPC. She rolled over at 4 months, sat up at 5 months, stood at the couch at 6 months, and started crawling at 13 months. She is now (14 months) pulling up to stand on her own and will take steps when her hands are held. She is on medications and supplements for her bladder/kidney health and does have a urinary catheter placed to empty her bladder (this is super, super easy to do and adds about 1 minute to a diaper changing routine). She is curious, smart, talkative, and quite possibly the happiest person on the planet. People will literally walk all the way across the store/park/etc to say hi to her and comment on how cute she is. In case you are wondering what spina bifida looks like, here is what it looks like: http://community.babycenter.com/post/a49532914/beautiful_babies?cpg=1
D-day is tough. The surgeries and the NICU are tough too. The first year is busy, but it is with any newborn. But you will see the other side of this – the side where you have a beautiful, perfect, wonderful, amazing child that will inspire you every single day. The love that you feel for this child will simply amaze you.
Please keep us posted and feel free to ask questions. Nothing is off limits (both here and on BabyCenter).
I also just read this post, and it spoke to me (other than the advice to “google everything” – I don’t recommend googling spina bifida, but instead staying on this board and the BabyCenter board)
I have an appt with my ND at 11:30am this morning. I’ll ask her and report back here.
So the recommended doses for d-Mannose are 2g for adults and 1/2 to 1g per day for children. I have been giving my daughter 1g per day since she was maybe 5 months old. It can’t hurt you. It basically just goes right through you and then gets used up in your bladder or gets flushed. I will probably stay with 1g until she gets into her teens or until she starts having UTI problems. So that would be my recommendation.
Interestingly, Dr. Mercola says you can TREAT a UTI with d-Mannose too. That wouldn’t really apply to those of us already using it, but would be interesting to try for someone not already on it.
Thank you. I can’t actually visualize how much 1g is. Do you give it all at once, or break it up into smaller doses?
I buy the NOW brand powder from my local health food store. Here’s a link to the product on Amazon.
1/2 tsp is 1g
I put it in her homemade goat formula with all her other supplements. I make a 1/2 gallon at a time, which lasts her three days, so I put 3g in when I make it. So yes it is broken up between all her bottles over a 3 day period.
You could do 1/4 tsp twice a day or 1/8 tsp four times a day – whatever works best for you. I’ve never tasted it, so I don’t know what type of liquid would be best. Hold on. OK, it tastes like powdered sugar. So that should be super easy.
Excellent. Thank you!
So glad you like your orthotist–he sounds very open minded! Stride Rite worked for us for the first several pairs of braces and they were pretty durable. The last couple braces have been more challenging. Our orthotist suggested Wal-Mart and, oddly enough, they do seem to fit better than most. I think because they are made cheaply, they are wide and less fitting–which works better with braces. I bought like 8 pairs of a shoe I found at Wal-Mart that fit really well but if she crawls outside (which she often does), they ruin after one use. In dept. stores, I’ve also noticed the cheapest pairs fit the best. Currently, she wears http://www.sears.com/carter-s-toddler-girl-s-rush-2-athletic-shoe-pink-lime/p-036VA69575412P?prdNo=11&blockNo=11&blockType=G11 and http://www.sears.com/athletech-toddler-girl-s-berke-blue-purple-pink-athletic-shoe/p-036VA77267512P?prdNo=33&blockNo=33&blockType=G33. The second pair are more durable. Laces work much better than velcro but are very hard to find in the smaller sizes. Both shoes are 1 size bigger than what she would wear without braces.
Yes, you remember correctly. We did just buy the Tsukihoshi. I L. O. V. E. them. They are supportive,flexible and super, super light. Totally washable, though I haven’t done that yet. And, like the Stride Rites, they are a bit wider than average with a very accommodating toe box. Her brother has some Stride Rites, and we like them, but they are not as light and for her, to me that’s a big deal. Her feet are so dang small and she is still scooting everywhere (like greased lighting!), I worried shoes would be a hazard. But these have been great and seem very durable.
We were sized for DAFOs on Monday and I’m planning to get another pair of the Tsukihoshi for her to use when she needs to wear those. The insole comes out easily, if need be. I’m planning to go up 1 1/2 sizes to start. I like that’s they make a half size. I think they will work well and, since we won’t be using the braces full time I hope they will last until eventually she can grow into them for regular wear. There are so many color choices and combos that I bet you could easily find something that won’t show dirt.
How exciting to have such a partner in your orthotisit! Must be totally refreshing!!
Let us know what you decide about the shoes. This seems to be a real issue for a lot of folks.
You are welcome! Come back and let us know how it works. Has Meredith been struggling with UTIs?
Oh, and I wanted to let you know I’m still working on the About Us page. I think it is a great idea, but I’m having trouble writing the content. Somehow, when it is personal it becomes difficult for me, ha! I have it half written, but am not really happy with what I have so far even.
Before her diagnosis, we struggled mightily. She was even hospitalized once with a strain that had no oral medicine. After her diagnosis, we were seeing a urologist with less SB experience and I was much lower on the SB learning curve than I am now, and so got put on a prophylactic dose of Primsol. The urology team at Lurie prefers NOT to be on an antibiotic and I agree with that. But I’m still nervous. And if there is no harm in the d-mannose powder, then I’m going to use it. Hopefully having her bowels well managed now too will be a great help.
Ooooh, Dynamic AFOs. Never heard of them. Do tell. . .
Well, I really don’t know a thing. I’d never heard of them either and, of course, this is all new to me. I know they are coming from Cascade, if that helps. My understanding is that the brace material is somewhat flexible to allow for more natural movement when they are worn. Its what our Ortho doc wanted, and since we aren’t going to be wearing them full time, and because we trust him, I just sort of took his word for it. We weren’t totally sure we would even get them. We are supposed to pick them up on the 22nd. I’ll get more detail then.
If there’s something particular you want to know, ask me and I’ll be sure to ask. I really liked the orthotist. He was my age, with kids my age, and many years of experience. He’d worked in a hospital setting doing serial casting for a while as well, which gives him a broader perspective.
It was a very interesting experience, having her fitted. And he pointed out some things no one else had. In particular he asked if we were doing any stretches with her toes. We weren’t. No one ever mentioned it, and though she does always seem to be curling them, I never paid it much attention. But one pinky toe in particular he pointed out was starting to really make an impression in her foot. I’m glad he said something!
Anyway, happy Saturday. Hope you guys are warm!!
Here’s what Wikipedia says.
A DAFO (Dynamic Ankle Foot Orthosis) is a brand name for some lower extremity braces that provide thin, flexible, external support to the foot, ankle and/or lower leg. Designed to help a patient maintain a functional position, a DAFO can improve stability for successful standing and walking.
Different from a traditional Ankle Foot Orthosis (AFO), which is typically stiff and rigid, a DAFO is characteristically thin, flexible and wraps around the patient’s entire foot in order to provide improved sensation and alignment. Initially designed for use by pediatric patients but now sometimes used by the adult population, a DAFO encourages range of motion, allowing children to learn movement by moving and providing minimal support, only where the patient needs it. DAFOs are frequently prescribed to assist with mobility and motor skills of children with cerebral palsy, spina bifida, muscular dystrophy, clubfoot and autism.
The concept for the original DAFO was developed in 1985 as collaboration between Don Buethorn, CPO, and Nancy M. Hylton, PT, LO. The two worked together to create a thin, flexible brace that would meet the needs of pediatric patients with neurodevelopment challenges and the result was the creation of a Washington state-based company, Cascade Dafo, Inc.
Oh good. Well please DO report back either way. We’ll be interested to see how she does, for sure.
Very interesting. I wish I had known about them before my appointment. Well, I will ask him about them at our next visit. Some of the pictures make it look like they are hinged at the ankle. Yes, some of them have hinges. Very interesting. Thanks for sharing.
We’ll have to swap AFO pictures when we get ours in a few weeks.
Its a deal! When are Pooka’s supposed to be in?
It’s been quiet on the BBC board too, really. And I’ve enjoyed the conversations we’re having, just a busy time of year.
I love the idea of Christmas pictures, though I don’t have any to share. At least not yet. It is still Advent, which we take pretty seriously. 😉 And also, I am terrible about taking pictures…
Good to know about the “About me”. I’ll have to give it a look!
Unfortunately, I don’t have any experience to share, but I am concerned.
Were the previous spots all gone before yesterday’s treatment. How long did they last?
And then after the treatment yesterday she got new ones on her back?
Are the spots red like blood or red like irritation? Do they itch? Are they bothering her?
The spots were mostly all faded before the new treatment. They look like blood. Not irritated at all–completely flesh with skin–they don’t bother her.
I’m sorry, but I don’t have any advice. I’ve not had that with Z or myself (I’ve been going for years). Don’t you hate Google?! It can be so helpful and so scary and so hard to know what’s right.
When they faded, did they fade like a bruise, changing colors? Haven’t you made any other changes? Diet? Supplements?
She is on a new supplement that I think could have contributed. However, with the first and third round of the spots they were very clearly related to the acupuncture. Its confusing. I am going to see if my SB clinic will go ahead and test her blood just to ck for any underlying problems. I feel like when they fade, they just get lighter in color until they disappear.
I just wanted to add that scalp acupuncture is a modern technique with just 40 years of history. It was developed by a Chinese neurosurgeon, who combined his Western medical knowledge of the brain with his ancient Chinese needling techniques.
I dropped by my acupuncturist’s office today. She was in the middle of watching one of her online scalp acupuncture courses and was all excited. She told me all about how scalp acupuncture has helped MS and Parkinson’s. She said that patients with Parkinson’s have actually gone into remission after treatment and that MS patients have started walking again, no longer needing their wheelchairs. She was so excited about it!
She said to tell those who are skeptical of Eastern medicine that scalp acupuncture is a non-invasive way to access, pinpoint and stimulate the various nerves of the brain.
Got the call this morning. We get them next Friday at 9:30am. I will report back then.
Ooooh! Exciting. I can’t wait to see!
Once the child is walking, support is so important. Finding that in a wide shoe is expensive and difficult- at least for us! We do have friends who remove the insoles and are able to wear whatever shoes they want, but that has never worked for us. We use Hatchbacks, Keeping Pace, or whatever I can find after HOURS and many shoe stores visited. Really hard when it’s a girl- there just aren’t cute boots and pink shoes out there for AFO wearers.
I’m still here! Just crazy busy, as we will are. I am still bouncing around ideas for articles I want to post. Thinking…thinking…
Yep, tell your doctor. Let us know. It could be related to the acupuncture, and probably is, but just in case…I’m interested to hear what you decide it is.
I’m sending this post to several friends who deal with type 2 chiari. Not SB related, but still good info for them.
Just wondering how things are with Claire. Did you get in touch with the clinic?
While we’re getting updates, how is you little one’s eczema, MrsK?
It comes and goes. The pedi suggested aquaphor, which isn’t exactly all natural, but honestly, so far its done the best job. He’s still plenty dry and scaly, but the angry red is gone.
It really seems to flare when he’s had a stressful day. (Not surprising.) Unfortunately, you know. THREE. So, we have a lot of those. Poor babe…
My DD had a gait analysis last month. Check out the Motion Analysis Center at the Rehabilitation Institute of Chicago (MAC at RIC) and Drs. Dias and Swaroop. Best in the world for ped ortho and SB from what I understand. The gait analyses provided a LOT of information in conjunction with a manual muscle test, esp since my DD has an imbalanced pattern of function in her ankels and feet. They did the gait analysis prior to preparing their surgical plan. Super easy test for the kids. We did have to appeal to the insurance company three times to get it covered however.
Regarding the carbon fiber braces, we had an orthotist as a speaker at our local ISBA chapter meeting recently. He seemed very up to date on the latest and greatest in bracing, and mentioned carbon fiber braces. I will admit I wasn’t paying the best attention as bracing doesn’t apply to us just yet. But anyway, the gist of his talk was that carbon fiber is up and coming but still not perfectly tweaked for the SB community and plastic is still where it’s at. There was some drawback that made sense at the time, but I have forgotten what it was. So keep pursuing it and forcing them to experiment!!
I called our SB clinic and her nurse didn’t seem too concerned (she does acupuncture herself) but we will do the standard blood testing at our next clinic appt.
After our acupuncture appt yesterday, she did get more spots but the previous ones had faded going into the appt. They seem to be clearly linked to the acu but she is on a new supplement that is supposed to tonify the blood–Bu Zhong Yi Qi Wan–so I think that must be a factor since the spots are new but we have been doing acu for awhile.
After this pt, unless I see something alarming, I think its ok. Thanks for checking on her!
I meant to say, Wellspring Hope, that I haven’t tried your recipe. Plain cocount oil hasn’t really helped and I haven’t yet got my hands on all the oils. I’m actually hoping to be gifted some this weekend. So, more to come…
Just wanted to give an update on Caroline. She is doing great!! She had SB clinic in November and did really well. PT is very impressed with her mobility and thinks she will be walking with AFOs by 18-20 months old. She will be fitted for her first set in January and I am excited to find out if the new carbon fiber braces will be an option.
Urology was not as great at we had been hoping. Caroline continues to have great looking kidneys and no reflux, but her bladder wall still looked thickened. We had to increase her dose of Ditropan. Unfortunately, I have never been thrilled with our urologist and will be seeking a second opinion in a couple of weeks.
All in all, she is happy, healthy, smart and funny. Cats are still her favorite thing in the world as well as giving open mouth kisses anytime someone makes a kissing sound. She really loves to kiss the cat and we will be surprised if she does not cough up her first hairball very soon 🙂
Here is an updated pic of my beautiful babies!
Along with our investigations regarding an alternative treatment (ETV /CPC) of Hydrocephalus we also stumbled into this forum. But maybe I start from the beginning just to introduce ourselves and tell you as short as possible about our story!
Before I start, telling our story, I’d like to admit that I was deeply touched by your stories and really, really hope that all still works out for you and your little ones!! It is really true, SB is something very bad, but on the other end: something that belongs to someone you ..love!
My name is Ben, my wife is called Miriam and our (now 7month old!) daughter’s name is Marlene. We live close to Augsburg (Germany:-).
During our pregnancy on June-1, 2016, along with our 20weeks US, Marlene has been diagnosed with SB. (If I look backwards I can now definitely confirm your story: Although there a hundreds of challenging events along with SB, the diagnose day, incl the days after, has been the worst by far!!). Everything was turned upside down: fear, sorrows a lot of additional open questions on how to proceed, except one: We never asked the question if we should determine pregnancy. We in fact let us inform about the gender of our little one, as we wouldn’t have done without the diagnose. This was to immediately give her her supposed name ‚Marlene‘ at the time we arrived full of tears back in our car. By giving her her name she immediately became THE PERSON we were ready to fight for – no matter what..!
I try to keep the following really short, since you are definitely familiar with all I list here:
We passed all required examinations / inspections and went under fetal surgery exactly one month later – July-1, 2016. The surgery was done by Prof.Dr.Martin Meuli and his team in Zürich (Switzerland). The surgery itself was a huge success. Marlene was born in time in week 37 by c-section, again in Zürich on Sep-23, 2016. During the first check-ups in the NICU Marlene did just great: Neurologics good, bladder good, legs/feet/toes: motors good. The only thing which was subject for more intense monitoring, was her hydrocephalus that was, however mild, but processing. 2 Month ago the indication of local neurosurgeons was implementation of a shunt. This was confirmed by some other neurosurgeons that we visited. Since it wasn’t an emergency at this time, we started our search and found (surprise!): Dr. Benjamin Warf! We looked into all of his investigative work and went through his studies around ETV / CPC. We then did a remote Second Opinion at Boston Children’s Hospital (via GrandRounds). We were so happy that Dr. Benjamin Warf personally reviewed our case! He replied within a very comprehensive opinion that Marlene would be an „excellent candidate” for the treatment ETV / CPC. Currently we are in the last steps together with Boston Children’s Hospital: Setup treatment plan, travel preparations, … . So we have decided to go this way since all looks so promising, and – not at least – Dr. Warf seems very optimistic in regards of Marlene. We are very happy.
Since I now found this forum and read your stories, I found that you also underwent the ETV/CPC. Would you mind providing us your experience around the ETV / CPC? I mean, we anyway will go for the procedure, since we are looking forward to this great opportunity, however it might be very interesting to hear how you went through it all. I just phrase some topics here:
How have you get to Boston and to the ETV / CPC procedure?
How long have you been at Boston (prior / post surgery) and how was your time at Boston Children’s?
How did your little ones developed since then?
Is there anything that you would state as very important to know?
Thanks a lot for reading our story, and – of course – for your feedback & very important: ALL THE BEST FOR CAROLINE!!!
Hi Ben! My sincerest apologies for the extremely delayed response. First and foremost, congratulations on your beautiful baby! I am sure Marlene is the joy of your life!! I enjoyed reading about her story and so glad you found us here on SBN.
First, it is awesome news that Marlene has made it all the way to 7 months without any hydrocephalus intervention. That is an enormous success! And, I am very happy you found Dr. Warf and will be pursuing the ETV/CPC. The success rate is good, especially for a baby that has not needed intervention for this long. Yay!
Caroline had her ETV/CPC at 7 weeks old. The procedure was preformed in Portland, Oregon by a doctor that was trained by Dr. Warf. Caroline has not needed any further intervention. She has had many MRIs to follow her surgery, and all have looked good, so now we do the MRI every 1-2 years. The ETV/CPC is not successful for all babies and some kids do need revisions and/or a shunt placed afterwards, but apparently the success rate of a shunt goes up (less complications) if there was a previous ETV/CPC. At any rate, I am glad you are visiting Dr. Warf and exploring all of Marlene’s options.
Unfortunately, I won’t be able to answer your questions about Boston since we were treated in Portland. However, I will forward your questions to another mother on this forum who’s baby was/is treated by Dr. Warf so she know all the ins and outs.
Our experience with the ETV was smooth. We were admitted early in the morning, she had her procedure which lasted 2 hours (I think?), she recovered pretty uneventfully (a bit of crying, her eyes involuntarily wiggled – called nystagmus – for about an hour then resolved, no seizures, minimal pain meds, eating within an hour or two after surgery), we stayed only 1 night in the hospital, discharged the next day on minimal pain meds. The followup was a bit intense – weekly MRIs for a month, then every other week for a month, then once monthly for 6 months, now once every 1-2 years. This is not often the protocol, so don’t let that scare you. I know of many cases where people went home and just monitored signs and head size/circumference and reported back to Dr. Warf the results.
I will message the other mom who knows more about Boston. I wish you and your family all the best and will look forward to an update about Marlene!!
Tracy sent me a note and asked if I could help you some. We are patients of Dr. Warf and she thought I might have some useful insight.
First, CONGRATULATIONS on your sweet girl!! And what a fun age she is now!!
We traveled to Boston for our daughter’s birth, in order to have access to Dr. Warf from the beginning. Zelie’s ETV/CPC surgery was done at 17 days old. She was still in the hospital there from her birth/back closure surgery. Since then we have traveled back annually, but that has been our preference not a necessity. We have been there 5 trips in all.
The hospital in Boston is VERY accessible by train (they call it the “T”) or cab, no matter where you stay. If you have not already made arrangements for where you will stay, I would contact their patient housing division immediately. http://www.childrenshospital.org/patient-resources/accommodations/patient-family-housing-program Boston can be quite expensive and sometimes, there just are no rooms, no matter how much you have to spend. Patient housing may have availability. They will allow one parent to stay in the room with Marlene at all times, but can only accommodate one person overnight and the room might be shared with another patient and their family. If you stay withing walking distance, walking is by far the best way to get there. Vehicle traffic can be more than a nuisance. All patient family housing accommodations are within just a few blocks.
The hospital itself is quite large, over 400 beds. They have been undergoing some remodeling, that might yet be underway when you are there. My point being, it can be a little confusing to navigate at first. You can ask ANYONE for help. Everyone there is helpful. There is an area just across from the main entrance dedicated to patient families. They have many helpful resources and could most certainly help you find your way.
We were still in patient when Zelie had her surgery, so I cannot speak to how to register on the day of surgery or what might be required prior to that date. I’m sure the hospital will tell you. I believe they require a preoperative clinic visit the day before. The surgery itself generally requires only one, or maybe two nights in the hospital. Given that Marlene has done so well until now, I would not be surprised if one night was all that was required. We have always found the staff there to be of the highest caliber. Dr. Warf himself is both honest and kind. He absolutely takes each child to heart.
For us, because we also live quite a distance from Boston, follow up included a two week post op visit, sending him weekly head circumference measurements and another “final” surgical follow up visit at 6 months post surgery.
As far as how long to stay… You’ll need a day to travel, a day to recover, a day for pre-op clinic, the surgery day and one or two days in the hospital after. That’s a week. I would find out in advance what sort of follow up he will want from you in the first few weeks following surgery. If he wants a 2 week follow up visit, I would plan to stay for 3 weeks if I could. It would just be simpler than two transatlantic trips in one month! And Boston has a great deal to see and do.
Developmentally, Zelie has done very well. She has excelled with language mastery, and what few delays she has had have been related to the delay in gross motor skills, and hospital time, that have kept her from the experiences on which development is predicated. In some ways, it is a bit like being a preemie, though she was not premature. As she has gained those experiences, she has caught up where she was behind. She is a charm and a delight who has no problem expressing herself or navigating her world in an appropriate way.
I hope that helps you. Please feel free to ask me anything. I’m delighted to help if I can.
Dear Tracy and MrsK.
Now it’s up to me to apologize for a very very long delayed response to your very kind, sensitive(!) and supportive notes to my message. It feels so unbelievably good to get such feedback from someone who is going through the same story as oneself! Thank you very very much.
The reason why I wasn’t coming back earlier is because we were busy with a lot of things around Marlene’s current condition and also with BCH regarding plans for the procedure (ETV/CPC). But now comes the good thing: We were finally able to get all remaining topics sorted out together with BCH International desk. The delivered input from your end helped us as well to prepare ourselves before hand in regards with what to expect during our stay at hospital)and how to situate accommodation wise. …. So here we go: We arrived in Boston yesterday. Meeting with Dr. Warf is scheduled for tomorrow morning following by all pre-op checks. The surgery is scheduled for Thursday, to be performed by Dr. Warf!!
So all set – also because of your kind support! Thank You very much. As said I hope, all is still ok and evolving good at your child’s!? I send you all best wishes back from our end. I will certainly keep you posted about the result here in Boston!
Thinking of you and your family today and hoping that surgery is swift and uneventful! Keep us posted!
(And, darn, I can’t see the photo you posted).
I would def. take them back in to be adjusted. The orthotist can probably heat and tweak them without remaking the whole thing. Do they both stand up if you put them on a flat surface without shoes?
I love the pattern, by the way!
Neither of them stand on their own. Is that bad? :-0
Short answer: I don’t know. It seems a little concerning to me but I only have bits and pieces of info I’ve gathered. I *think* Dr. Jordan’s makes his braces so that they don’t stand up on flat surfaces but they are not made of rigid plastic and therefore, are meant to move more with the child. That being said, we once had a pair of braces that didn’t stand up and our PT was terribly concerned and sent us back to the orthotist immediately–his solution was to add a wedge (build up) to the bottom of the braces which did make them more bulky (long story but we returned the braces). On a separate occasion, when I asked an orthotist why the wedges were necessary (all of C’s braces have build ups because her feet are not completely unclubbed and can not get into the best position without one), she said that the whole foot needs to be bearing weight so that the proper muscles all the way up the leg are firing. OK, so I didn’t mean to over complicate the issue, but looking at the bottom of the brace, it makes sense why it would slip out of the shoe. And I would be worried that P would not being bearing weight on the whole foot and that they wouldn’t offer enough stability. I would just really question the orthotist about it and make sure that he made them that way intentionally.
Merry merry merry! Wishing you and your loved ones a joyous holiday!
Aw, great pics! Merry Belated Christmas to you too!
Our next appointment is on the 5th. I’ll let you know what he says. She has been back in her boots (minus bar) until we get an answer on the AFOs.
MrsK, did you get your DAFOs on the 22nd?
Thanks for the update. Keep us posted on urology. I’ll be interested to hear about the results from the second opinion appointment.
I’d love to see her little AFOs, once she gets them, too!
I didn’t. We postponed during to a trip out of town, rescheduling for this coming Monday but that was canceled as well. Braces aren’t in yet. They expect them tomorrow, just not in time for our appointment. Hopefully we will get a call tomorrow saying they are in and we can reschedule.
I wanted to update on what I’ve learned about methylfolate dosing since my ND returned from her trip. She has the women in our family slowly dosing up each day until we experience methylfolate side effects at which point we will take niacin to address the side effects. Then we will go back down a dose and stay there. That will be our dose.
Here is an article on determining dosage:
And another on potential side effects:
Very interesting. I am, or at least have been, a devotee of the Stop the thyroid Madness (its what got me taking Armour). And Niacin is something I have taken in the past for thyroid. Curious to see it tied in here.
So I DID get the oils, and mixed this up. It smells delightful! It might be making some difference. At least, our improvements seem consistent and he’s not flaring back up if we don’t apply on schedule. That’s something. He complains that it hurts. I think it may sting, or at least tingle, a little.
I’m going to persist with it a bit longer and see what happens.
Love these photos! Merry Christmas to all of you, and a HAPPY NEW YEAR!!! May it bring GREAT joy to you and yours!
I just had to chime in really quick and let you know what amazing things the helichrysum is doing on my oldest son’s burn scar under his right eye. After months of staying the same with no visible progress of any kind, just a few applications of helichrysum have produced dramatic results. Not only is the scar getting smaller, but the discoloration is fading significantly. It’s really amazing. Lydia, you were so right!
Welcome to SBN! My daughter is 13 months too, born on 11/19/13.
How long since your daughter’s last BM?
And what are you feeding her other than yogurt? Is it cow yogurt or goat yogurt?
I see you are still online. I have to reboot my machine due to a printer problem. But I’ll be back in a minute.
Funny! My daughters birthday is 11/18/13.
It is just yoplait greek yogurt. She eats pretty much anything we put in front of her. Any suggestions of what to stay away from / include in her diet?
I should mention we just transitioned her from breastmilk to whole milk. I was not making enough for her anymore and she needs the calcium / vitamin D boost as she has low tone and weak bones.
My daughter is 4 and uses senna and enemas (and very careful attention to diet and water). For us personally, I can see how the molasses and fish oil portion would help with the diet aspect but for my daughter a stimulant is needed as well. Although senna isn’t the most natural, it is more so than miralax and other alternatives. And it regularly moves the stool through the colon–it causes the colon to contract. For my daughter, we have actually been able to significantly decrease the senna dosage over time. But its so important to keep the colon clear so it doesn’t stretch out so I have always erred on the side of caution and then slowly decreased when I noticed her motility had improved. Welcome to the board!
I have wondered in Senna was a good option. Might be worth a try. We have been struggling with constipation since they put her on ditropan at 3 months. We had no issues until then. It is very frustrating to put her on a medicine to manage the side effects of another.
I totally understand your frustration. We are looking into starting bladder medication soon and I’m not looking forward to it–constipation being one of the aspects I am most dreading since we have made such progress with her bowels, On a positive note, she and I are both excited that she will be in underwear soon!
Oh, wow. That makes sense then. Cow’s milk was constipating to even my non-SB kids. Does the timing of the transition to cow’s milk correspond to the molasses/fish oils no longer working?
I also had problems with breastmilk supply and eventually changed to a homemade goat milk formula, meaning store bought goat milk with added supplements, like molasses, probiotics, etc. This has worked wonders for my daughter. I am happy to share the recipe if you are interested.
And yes you do have to be very careful about diet. I’m hoping MrsK can jump in on this one as I don’t have a full understanding of the diet principles. I just know to avoid rice and apples. My daughter has been primarily drinking her milk and eating sweet potatoes with some occasional beets and kale. I’ve been really hesitant to branch out much and she really just loves her sweet potatoes. She has a few small pieces of chicken breast on her tray now, but she is just playing with them.
That is funny! I checked into the hospital on the 18th. Little did we know! Where do you live?
I probably should have mentioned that goat’s milk is easier on baby’s digestion because it is somehow much more similar to human milk than cow’s milk (can’t remember the details). I also put a children’s multi in the goat milk, which includes calcium and D, btw.
I live in St. Louis, MO. Her constipation has been a real battle for a while. The transition didn’t seem to matter much. She was doing fine until we starting switching her away from Miralax. Maybe I transitioned her too fast. We just stopped the Miralax one day and started up the molasses /fish oil. It was working for about 10 days and then things have been difficult. I have had to give her a few suppositories and those seem to work for her. I do not want those to be a permanent option though.
I might try the goat’s milk and see if that makes a difference. Can you pass that recipe on? My mother in law watches her every day as I work full-time so I will probably have to mix this for her on a daily basis.
Another gal on this board, Tracy, weaned her daughter off Miralax, Perhaps she might have more insight for you on that transition.
I mix up a batch at a time, but I’m trying to make it simple for you. If you make enough for just one day, you are just going to follow the label for the daily dose on whatever brand of supplement you buy:
1 Tbsp unsulphered blackstrap molasses
1g d-Mannose powder (to prevent UTIs)
1 daily dose emulsified fish oil/cod liver oil/omega oil
1 daily dose infant probiotics (powder or liquid)
1 daily dose children’s multi (liquid or powder, (I use Thorne Children’s Multi and take them out of the capsules))
Do u put it all in her goat milk ?
Yes, I do, but others administer it with a syringe. Two nights ago I tried to put the protocol all into one post here:
Inside that post are two orange links – one to Tracy’s oral syringe recipe and one to my goat milk recipe.
Oh gosh! Just saw this and not in a good place tomorrow reply, but will follow up in the morning. I second the senna and the suppositories, at least for now.
More to come. So glad you’ve joined us!
Hi and welcome to the board!
My daughter became constipated 2 days after starting ditropan when she was 4 months old. She was entirely breastfed at that point. Ugh!! I hate side effects, but certainly want to keep her kidneys and bladder healthy and growing properly.
She was on Miralax from 4-10 months old with so-so effects (probably because I hated giving it so never really gave the right dose). I learned about the molasses from Tina and decided to give it a try. I gradually weaned off the Miralax and onto the molasses/fish oil by decreasing the Miralax by 25% every few days and increasing the molasses by 25% every few days until she was on only the molasses/fish oil. It works really well….mostly. Sometimes she still needs a glycerin suppository, likely depending on what she has eaten (ie sweet potatoes are not constipating but oatmeal is for her – she is generally not a very good eater and just does not seem to care about food, but so was my first daughter at this age!).
I still have Miralax on hand and will certainly use it if we are having trouble with constipation. Fortunately I have not had to give her any since 10 months old (she is 15 months now).
Great that you mentioned about the switch in milk. This is something I never considered, even knowing that Tina has said goat’s milk is better than cow’s milk. Caroline is still breastfed from me and from a cup (I have a very large supply of expressed milk in the freezer, fortunately). I am sure we will have another battle when we have to switch milk away from breastmilk. Anyways, just throwing that out there since maybe the breastmilk is helping Caroline too.
Hope this helps. Keep us posted!
Another thought – I recently got a new bottle of molasses and it did not seem to work as well as the previous bottle (even though both were organic blackstrap), so I switched back to the other brand. So – maybe try a different brand?
Just curious, what brands, Tracy?
Did not work as well (but I will try again): http://www.amazon.com/gp/aw/d/B000QV19BM/ref=mp_s_a_1_3?qid=1420646176&sr=8-3
I am not using Organic. Could that make a difference?
Tracy, it looks like your second copy didn’t take, cuz the links are the same. I wonder was the second one by wholesome sweeteners? That’s the one I have always used. I have never tried the yellow one.
Erin, it’s interesting you ask. I would normally have thought that it didn’t matter. But MrsK has always stressed “unsulphered” and Tracy has seen differences between brands, so it may very well make a difference.
Your dose may also be too small. I give 15ml molasses per day. Perhaps you should up your dose to 10ml and see if that makes a difference?
BTW, My ND originally prescribed the 1 Tbsp/15ml dose for iron consumption. She had no idea what it would do for her bowels. It was a complete accident. So the dose is based on iron needs, not bowel movement. I have always just stuck with that dose.
This article just came into my inbox. I found the title more interesting than the article itself. MrsK, I thought you would be interested too. At least in the title.
It is interesting. It also seems like a much bigger treatment that I’d want to chase after.
As it happens, we have come across a solution that works well for us. This soap http://www.amazon.com/Noble-Formula-Pyrithione-Zinc-Soap/dp/B004R3TBEC/ref=sr_1_1?ie=UTF8&qid=1420639183&sr=8-1&keywords=noble+formula+zinc+bar+soap has completely rescued little man. In 4 baths he’s 95% clear. We continue to use the miracle cream mentioned above. He even asks for it now! But the soap has made for a much speedier recovery!! Its full of lovely ingredients and the PZ that is in it, is limited but seems to be just enough.
This does help. I am going to up her molasses to 1tsp and see if that makes a difference. She had a decent movement yesterday but it was harder than I like. So maybe giving her more will soften things up a bit. We will see. Thank you all for the help. I hope I can figure out the magic combination for her. I really do not want to use Miralax if at all possible.
I was mostly interested to hear how and why they determined it to be autoimmune, but the article didn’t really address it. I wasn’t at all interested in hearing about their new drug.
The soap looks great. I love that it has emu oil in it! I use emu oil all the time.
Well I see I am very late to this party, but Tina asked me to chime in about foods so here is what I know.
Breastmilk really does help, Tracy. So be aware at whatever point you switch/wean that you need to be on the look out for changes with Caroline.
We steer mostly clear of all grains, especially rice. Oats can also be a constipating commodity. Once every couple of weeks, if we are having rice with dinner I give Z fewer than a dozen grains. Go easy on toast and cheerios and little toddler snacks where rice flour is the number one ingredient. They are EVERYWHERE, because normally they are very mild on little tummies, but theyare problematic for SB digestions.
Apples and bananas. Apples are super high in pectin and bananas (except for super ripe ones, which are fine) are super high in carbs. Both of those can lead to almost instant constipation. Apple juice is ok, but there are better choices (pear, grape) and really ripe bananas have tons of fiber, so they are ok, and can even be helpful. Ideally I wouldn’t use prepackaged foods with bananas. They are so easy to feed anyway. But the mixed fruits, even if they contain banana, I worry about less, and are a convenient treat sometimes.
Mostly these are fine, but anything that is high in starch should be given in moderation. So go easy on the potatoes and lima beans and such.
FWIW I do think you switched too quickly. Most of our kids have a much slower digestive cycle. So what you or I might “process” in 24 – 36 hours may take our kids two or three days or more. Probably the first three of the days you were off Miralax you were still benefiting from it. All that means is you need to give things extra time to accommodate whatever changes you make. If you up her molasses dose it could still take 3 days or more for you to see the results. So don’t give up too quickly.
Also I really strongly recommend only changing one thing at a time. I know it is tempting to “dive in” to a new routine. But, whether its kids or cars you are fixing, if you make several changes all at once there is no way to know which of those things is really helping. So… if you decide you want to increase her fish oil too, for example, I would wait until you’ve increased the molasses and given it a week or so to see how it is really going to work. That way you will be able to know what works best for her with a real certainty.
Oh PS – I don’t think orgainc matters over much. They use sulpher in molasses to preserve its shelf life. I do think the un-sulphered works better, and I prefer organic, but of the two un-sulphured, non-organic would be my choice over non-orgainic and sulphered.
And watch those expiration dates!
It almost read like the big thrill was the new drug, not the actual source issue. Goofy!
What else do you use the emu oil for?
Well… we STILL don’t have them. Crazy. Going to call and check in today.
I’m not sure why I never thought of that before, but it makes perfect sense that those still on breastmilk would need a much smaller dose than those without breastmilk!
Its a natural topical antibiotic. So I use it where one would normally use Neosporin.
It is also great for healing burns. I used it for the final stages of healing of my son’s burns
Did you get fitted for them through a PT or an orthotist?
My orthotist told me that Cascade created the DAFO as a product that could be easily fitted by your PT, then sent off to Cascade and mailed back to your PT. No orthotist needed.
Btw, our orthotist said the question of whether braces should stand on their own is, “It depends!” and he went on to give me a bunch of examples that made sense to me.
As to whether *our* AFOs should stand up or not, he said he was more concerned about strongly supporting her supination than he was about them standing on their own, which is why the inner side of the heels have a more severe angle.
He watched her crawl around in them, then taught me how to put them on tighter. It helped, but one of them was still coming off sock, shoe, AFO and all. It finally dawned on me that if the sock is coming off too, maybe if I got tighter fitting socks it would help. And it did!!! Now it only falls off once or twice a day instead of every 30 minutes.
Orthotist. And they did send away for them. He said normal lead time is about 2 weeks but we had issues because of the holiday. Just hung up with them. They came in last week when the clinic was closed . We go in tomorrow morning.
Good to know!
Glad you got some answers. Are they maybe just too big? Have you tried putting her in them without socks just to look at how much extra space is there? B/c maybe he could add foam padding in the problematic side to help it fit tighter.
I upped the molasses to 10ml last night and I will see if that makes a difference. I will have to make a few food adjustments as she loves bread, pasta and cheese. We try to keep it whole grain but that isn’t as easy as you would think. We already stay away from apples and bananas so that won’t be hard. We try to stay with pear and prune juice for her. She loves either so that isn’t hard. We do give her yogurt everyday as well as a probiotic. I am thinking we make a few adjustments and things will start moving again. Until then, I will have faith that there is a magic combination. Thank you all for your help.
I hope you guys are beginning to get the hang of it!
We went this morning and got our DAFOs. They are stiff, but still flexible. I can squeeze them in my hands if I use a bit of pressure. The orthotist said they refer to them as “softies” and don’t usually have issues with sores etc. Interesting to note, though I don’t plan to leave them on constantly. She didn’t take any steps, exactly, but it was easy to help her take them – a little tug at the knee and a little twist at the hip – much easier than without them. She thought it was mighty big stuff “walking” like that. She was very impressed with herself! She’s so into standing that I think this may well help her motivation, even if it doesn’t do that much for her from a technical/physical perspective.
I went in with a pair of Mary Jane styled Tsukihoshi’s . We took the soles out, and our orthotist sewed some extra Velcro to the top strap to make it long enough. They were a size larger than normal and work very well. A bit long in the toe, but her feet are so tiny that even the ones that fit her are a bit long there. Width wise they were perfect and the open design on the top really makes it easy to feed the whole contraption in. So all in all, I’m well pleased on that front.
I’m attaching a photo with and without the shoe plus the extra Velcro so you can see what we’ve done. I’ll attache another with me flexing them so you can see.
Yikes! Sorry that is so blurry. Let me know if you need me to correct it.
Here is the “squeeze” picture.
What an amazing story! I’ve read it 4 or 5 times, took notes, Googled things, wrote down questions. So here goes. I hope you don’t mind. I have a lot of questions.
1) How did you know your shunt stopped working when you were in 8th grade? And how was it determined you no longer needed it?
2) If you don’t mind my getting personal, if you don’t use Ditropan, how do you control your bladder between caths?
3) What types of surgeries did you avoid due to the blend of traditional/alternative approach?
4) Why do you attribute chiropractic to your unassisted mobility?
5) Having divorced parents with different philosophies, what did you do for PT? Did you ever use bracing of any kind?
6) How did you avoid tendon release? Did you have clubfeet? I tried all kinds of manual therapies to lengthen my daughter’s tendons, but nothing produced permanent results – myofascial, lymphatic & venous strain/counterstrain. The results were good, but always temporary.
7) How does a chiropractor facilitate nerve communication?
8) I’m shocked by what you say about Nixgia Red. Over what period of time did it shrink your scar?
9) What type of bioenergy machine do you use?
I look forward to hearing more. Thank you so much for your willingness to help us.
1. I actually didn’t know my shunt stopped. At that time I lived in rural eastern Montana and visited my dr only about every 6-12 months. It was during a routine exam the neuro realized it wasn’t functioning. He literally freaked out and scheduled me for surgery. (I was with my mom). I called my dad to tell him (divorced parents) and my dad calmly asked how anyone knew when it had quit. He posed, “what if had quit the day after I left the last visit?” With that question the dr agreed to let me stay in town at the hotel across the street for one week and to come in for observation daily. After that week and some further follow-up testing we realized I wasn’t having any major complications so the decision was made to just observe it further and I was sent home with a list of issues to watch for. Ultimately I had none until the age of 19 when it grew into some scar tissue in my neck and I could no longer turn my head, so then it was removed.
2) I have tried ditropan and a few others and ultimately the side effects are worse than living with some leakage. I do have that. I’ve had some improved control as I have implemented some of the stuff I mentioned in my story, but yes I do have some leakage. I do wear a typical feminine pad all the time to avoid obvious accidents. I used to wear actual depends but I actually got “addicted” to them (for lack of a better term) I got so dependant and let my self confidence go in my ability to function that I couldn’t walk from the house to the car without one for fear of an accident. At that point I worked on more confidence and self-awareness of the urge to urinate, and being more aware of my body’s energy signals (stress, anxiety, etc) and just worked to breathe through a situation that would send my nervous system into overdrive into a loss of bladder control. Sometimes it is mind over matter, which we aren’t really taught to understand we have control over with SB. It really is taught “we just can’t help it.” To a degree that is true, but it is so important to realize our thoughts, emotions, and stress do control us and that we can affect those in a postive way to gain more control over our own lives and bodies.
3) I avoided multiple shunt revision/repair/replacement surgeries. I had it placed at just two days old, repaired at three years old and removed at 19. I didn’t require the typical every few years replacement. I avoided the tendon release. I also avoided a bladder augmentation. I do have neurogenic bladder and some reflux both which have improved since implementing some of these. I used to go to the urologist yearly (as recommended) until the day she stated after one of my tests that things had improved significantly and “that wasn’t possible” so I’d have to repeat the test (I did and she had no explanation and wanted to repeat again– at that point I knew I was on to something and didn’t go back) I offered to explain to her what I was doing and she had no interest. Is it 100% better? Am I “cured”? No. but I don’t require care yearly like I did before and I have improved drastically.
4) Chiropractors focus on spine health. Not just in healthy “normal” people but in all people. One of my favorite chiropractors used this analogy with his clients. How often do you brush your teeth? (daily, or several times a day, right?) Why do you do that? (To keep your teeth healthy) How long do you plan on continuing to do that? (for life, right?) Why? (because we don’t want to let our teeth rot and loose our teeth). Same with spinal health. The nervous system runs the entire lengnth of the spine (and through the whole body) but every major organ, system, and gland is signaled through that nervous system. When there is a disruption in that nervous system those organs, systems, and glands are impaired or jeopardized. My defect is at L3 to S1 affecting bladder, bowels, legs, ovaries, the digestive system. By making sure my spine is in alignment and nerve communication is open to the fullest possible ability it can I free up the already burdened nervous system I was born with to reach more potential that I currently have. It is able to signal all those places that are “dysfunctional” to work more. I don’t have fully restored feeling, but I do remember growing up, clearly gaining feeling in portions of my legs that once were completely numb. This also ties in to question number 7. A chiropractor facilitates nerve communication by ensuring proper alignment of the spine which reduces pressure on nerves ( called a subluxation) and allows energy to freely move through the nerve pathway. There are different methods and techniques but the results and goals are one. Also because my spine was able to send proper communication, I was able to find balance. Muscles are able to “fire” properly etc.
5) I was in braces (removable) until the age of 2. I did have PT up to the age of 5 or 6.
6) I contribute much of my ability to avoid tendon release to the early chiropractic (as well the PT) now I would also definately add essential oils to it, massage, and customized homeopathy — but again, opening up that nerve communication is what I contribute the largest part. I do not have clubfeet. I do have a couple of deformed toes. I can curl the toes on my left foot, and some but not well on the right. (more than I used to however, that has gotten better as well over the years of holistic health
7) see number 4
8) I began taking the Ninxgia Red by YL for something different (can’t honestly remember why). I never even thought it would shrink my scar. Happened fairly quickly over about 4 months. Because I wasn’t really taking it for that I didn’t notice till “the day I noticed” if that makes sense. I was honestly shocked and amazed myself, but truly very excited and happy.
9) there are different software machines on the market, mine is an avatar.
I would have loved to have seen the look on her face while she was “walking”! How cute!
So what’s your plan for wear time? Will you put them on just when you are working with her on standing and walking?
It was a huge AH-HA! moment. That’s for certain.
Primarily I mean to have her in them when we are working on standing and walking, but I’ve put her in them some, sort of randomly, just to get us both used to them. I put them on her yesterday when we were getting in the van to go see Dad for lunch just because they were the closest shoes. But, as it turned out, she got a lot of time to stand while we were eating, so it was providential.
That’s the long way of saying, I’m winging it! 😉
P.S. I love the pattern. They look so cute with the shoes too!
Camilla – I think you are right that they are too big. He said he made them a little big on purpose and could put padding if needed. But for now I’m pretty content with them.
Oh and I meant to say she pronates, not supinates. Duh!
Keep us posted. I’ll be excited to hear what combination works for you.
What a wealth of information! Thanks for sharing all of this, Angela! I’m sure after I re-read everything, I’ll have some questions.
Awesome information. The shunt story amazes me. I’ve always wondered if Lauren really needs hers. She went a month without it after birth, then had the replacement for 10 years. An xray showed that the shunt had disconnected from the tube so of course,we went in for a surgery which turned into a ridiculous affair in which Lauren nearly died. Long story that I don’t want to get into, BUT next time I will ask the same question that Angela’s dad asked- was Lauren functioning just fine without the shunt repair?
The timing of your post is so interesting. I’m about to post a story about a little girl with Spina Bifida who went to Mexico to get stem cell treatment, but ended up having complications which resulted in loss of oxygen and a hypoxic brain injury. She has been doing scalp acupuncture and is showing slow improvements after each treatment.
Anyhow, yesterday she mentioned to me that she is considering HBOT, which I had to Google to find out stands for Hyperbaric Oxygen Treatment.
I also don’t know about how or if it could help our little ones, but I will do some poking around. Perhaps someone else will know?!?
Thanks for sharing so much information!!
I do have a question for you. I can only assume that you, like seemingly all our kids, have a Chiari II malformation. Did that ever pose any concerns in your Chiropractic care? Have your doctors made adjustments to that C1/axis bone?
Thanks again for being so generous with your story.
Good question. No I do not have Chiari. It would make a difference on the technique used, yes – but is not necessarily a reason to rule out chiropractic care as an option to look into. Definately communicate that to potential chiros but one that is trained well and confident will know what and how to work with that. Situation
I’m fascinated that you don’t have the ACII!! I didn’t know that was even possible if you had hydro as a baby.
I’ve been ruminating on your comments here. My husband sees a chiro periodically, so I’m not totally unfamiliar. But I’m very, very leery for our girl because of the ACII. I appreciate what you’re saying about finding someone who is well trained and confident, but a person can be very confident and still be very wrong. Given that baby girl’s brain is RIGHT THERE I think we may have to let this wait. Once she’s old enough to talk and say what is working or hurting or whatever, then maybe but before then, its just too much risk for my comfort.
I’d also love to know if you have some quick criteria for identifying chiros who are legitimate, physical medicine folk and who treats their therapy as a quasi-religious calling. There seems to be a lot of the second sort here and, to be frank, I find it off putting at best and predatory at worst. I would ideally still want to find someone with direct experience with the ACII, but that might help narrow the search.
Thanks again for all your input!
I can’t really speak beyond my own experiences bc I’m not licensed as a Chiro and it’s something they would also hv to consider within their own training and licensing as well as diagnosing the situation per each person they work in ESP in Sb cases and yes even more so with Chiari. I do know one of mine did work in a Chiari case so I know it’s possible but bc of liability it really isn’t something I can share more specifics other than knowing it has been done. I hv also seen where a Chiro had just not adjusted at occipital or upper cervical but had done lower work on the spine. I just wanted to share to def look into it and not rule it out out of fear …. But each case has to be evaluated between the Sb patient and chirp individually. As far as finding the right fit u can ask them about why they chose chiropractic as a profession. Ask them if they believe the body tobe self healing? Do be cautious of the ones that say Chiro fixes it all. I’d lean toward that person more than most BUT they do tend to get too focused on Chiropractic as a miracle rather than talking a whole body aporoach (diet, the possible need for medical intervention when necessary, supplementation and/or just leaving room for other modalities) yet when they are very big on “you body can heal itself” they are very much headed in the right direction “usually.” I can say I hv learned the body is absolutely capable of healing more than we are ever taught to believe so ESP in the case of Sb it can be a mind reset we need to let go of barriers we are told too often medically that “this is as good as it gets” — it’s def a balance and Sb can be where both medical and holistic need work harder to blend.
This is such an interesting conversation. I know another gal who has done holistic chiropractic on her son since birth, but he does not have hydrocephalus (so I assume he doesn’t have ACII either).
Angela, if you don’t have ACII, then what was the cause of your hydrocephalus?
I’ve done a little bit of research on hyperbarics in the past couple of days and though it is used to treat neuropathy in general, I can’t find anything about its use in the treatment of Spina Bifida.
The one story that keeps popping up over and over is about a man with Spina Bifida who regained the use of his legs after deep sea diving. I am very suspect of this story. If you Google “Mark Chenoweth Spina Bifida” you will see what I mean. The story is quoted on many different sites, but it feels more like an urban legend than a real story to me. The only credible source I can find is in the Diving and Hyperbaric Medicine Journal linked on the Rubicon Foundation website. I’ve used archive sources to read cached articles and even made some phone calls, but I don’t have anything yet. One of the articles online says he, “He has even undergone tests in a special high pressured chamber, studied by doctors in Egypt, who have tried to discover why diving has enabled him to walk. But so far they have come up with no answers.”
I wish there were more research with Spina Bifida patients. One of our favorite ND doctors in Spokane has a hyperbaric chamber. I might give her a call and see what she thinks. On her site it says, “Hyperbaric oxygen treatments deliver increased oxygen to the lungs and other parts of the body, including the plasma, bone, cells and all body fluids. This pressurized oxygen enters the cerebral spinal fluid and crosses the blood-brain barrier, entering the brain cells.”
Whether the diving story is true or not, his case seems unique anyway, but the use of oxygen to speed nerve growth or healing seems plausible to me.
I read a study on hyperbarics and neuropathy that said, “They conclude that this study provides additional evidence of a link between tissue oxygen levels from hyperbaric oxygen treatment and the health of peripheral nerves.” And another that said, “… all animals exposed to hyperbaric oxygen “demonstrated characteristics expected of in the advanced stages of a healed nerve”
Hopefully there will be more research in the future.
I read that story about the diver too. Not sure if its real, but even if it is, he had normal use of his legs for years first, at least from what I remember reading. So I don’t put that in the same category.
From what I can find it is used with CP and Autism because it helps increase cognitive abilities etc. That makes a lot of sense to me, particularly with CP. But, of course, it really has no strong implication for SB. Most of our kids are cognitively OK. I realize there are some that struggle, and maybe it would help those. But as an overall approach, I’m not sure it applies.
Interesting though. I’d love to see more info if there ever is any.
That disheartening that you will have to consider the possibility of surgery in the future; however, its fortunate that she is so young b/c it seems like solutions are always advancing and even if surgery is needed, hopefully even the surgeries will become more fine tuned and less invasive.
Remember the lady I spoke with at Shriners about the horseback riding? She said that tightening the sphincter was the aspect the riding helped with the most.
You are totally right about the benefit of having a good bit of time. And he didn’t say augmentation surgery, he just said surgery. Maybe just a bladder neck sling. I don’t know and I should have asked, but it caught me off guard.
I do remember your info on hippotherapy. I think there may even be a place here that does that. I need to check it out, but since she’s only barely 1, I don’t think she’s quite ready for that. Still going to look it up!
I echo Camilla – disheartening news, but fortunate that surgery is not imminent. I am certain that easier surgical options or medical treatments will be available when Zelie needs them. Remember that the ETV/CPC was not available even 4 or 5 years ago and look how much that has helped our little ones!!
And, reason to celebrate now – no cathing, no ditropan (or ditro side effects), no UTIs, healthy kidneys, healthy bladder wall. Yay, yay, yay!!
I don’t want to belittle, though, that receiving tough news is, well, tough. You are an awesome, supportive, smart mama and Zelie is in the very best hands. Hang in there and know that you are in good company here!
Yeah for Lili! Sounds like maybe the combination of senna and magnesium is doing the trick. I find that very interesting.
I can’t get away from that quote I keep mentioning from the lady with neurogenic bladder from MS, “Magnesium helps to retain water in the bowel, which makes waste easier to pass. Cape aloe, rhubarb and triphala help to stimulate and strengthen bowel contractions. Marshmallow and slippery elm help to soothe and lubricate the bowel.”
I would like to know if this is a good summary of bowel function. If so, perhaps providing supplementation to support each function might produce better results than just one by itself.
So where does senna fit in? Does it stimulate and strengthen bowel contractions?
I have a lot more learning to do before I better understand this whole bowel thing.
Sorry to hijack your post. I’m just thinking *outloud.* 🙂
I’m just so glad you have found something that is working for Lili!!!!
That is so fantastic!! How wonderful there is a group near enough for you to participate!!
It is a new team, just formed last August. I love when parents decide to start something themselves rather than wait (like me). Haha! Lauren cannot stop talking about it. She feels like a part of something and loves that it is people like her (her words). And boy can she FLY on that court!
I’m sure it is a total thrill!! Who doesn’t love going fast? Hopefully she won’t go too mad with power. ;D
Amazing and so fun, both for the participants and the spectators! Thanks for sharing!
How fun this must be! Who wouldn’t love to roll down the court at lightning speed?
As a mother who has had her fair share of accidents in the past few years, I can’t help but ask, are there ever collisions and spills?
Oh my word, yes. I cannot understand why the kids with SB (and shunts) don’t wear helmets!!!! I am probably going to make Lauren wear one when she gets older. The younger kids will sometimes run into each other or get their wheels locked together, but the older kids!!!!! oh my, the older kids flip and fall and have to have coaches lift them (since they are strapped to the chair). Some of the really big guys are so strong that when they fall they do push ups really fast until they push themselves back upright. CRAZY. And scary. My first exposure to wheelchair basketball was an episode of Friday Night Lights that someone recommended. It was so rough and scary, that is why I put off letting Lauren try it. It is not nearly so rough when it is younger children.
You know, I think that a lot of things in childhood are more rough and scary than we think because they are the “normal things” in our memories. Even so, I have always, always been amazed when watching athletes with some sort of physical disability at how fearless and ferocious they can be. (Thinking about sled hockey. YIKES!)
It certainly doesn’t matter what I think, but I do think it must be really empowering. And that for some, like our regular poster boy Wheelz, absolutely addicting. And the bumps and breaks are like “Whatever. I’ve already been through X,Y, and Z. I’m tougher than this.” To be able to take that sort of charge of yourself and to be just as tough as the next guy, to not be “the wheelchair guy”… It would make me feel like a super hero! I bet it does them too.
So here is my contribution.
Z is 14 months. She has slow motility, but it is there and functioning. What she really struggles with is evacuation. I know this because when we use suppositories, which we do daily, it is obvious she has what I would consider to be proportionally normal amounts of formed stool about the consistency of modeling clay. So clearly she’s getting it all “down”, just not out. We use FruitEze about every other day right now and that seems enough. (We are super luck there, and I know that.)
Overall, I’m really happy with this. We could work on a softer consistency, but I worry that we’d just have rash all the time then. And honestly, the way it is now I never worry that she’s constipated somewhere further up and only the soft, liquid parts are getting past. I hope we will be able to maintain this way until we work out what is up with her bladder and/or are able to start a proper bowel program in another couple of years.
My goal really isn’t to keep her super “cleaned out”. I know that is a concern for some but as I mentioned, I’m happy with the movements we get. I remember reading another mom elsewhere talking about how she thought things were fine until her LO had a serious round of antibiotics and how shocked she was at how much poop came with that. That this convinced her to do more. But when I read that I think, well yes, but that would happen with anyone. It DOES happen to every one that way. Going for a mostly completely clean colon all the time seems abnormal to me. ???
This question has really gotten me thinking.
I don’t think my answer is going to be all that helpful.
Because Pooka’s supplement regime is working, her bowels “act normal”. She has 2-3 bowel movements a day with a soft, but solid consistency, and a pretty good quantity. And she is clean in between.
But early on when I would supplement my breastmilk with organic formula or raw goat milk, she would instantly get constipated. But she has always been able to get unconstipated on her own by either returning to strict breastmilk (back then) or returning to her supplement regime (now).
So how do I evaluate that? I’m not sure.
Without supplementation her stools become hard and come out like little pebbles.
Well I guess there is one more component. When she becomes constipated she STRAINS.
So that means she has some ability to feel the need to push? And the ability to physically push?
C is 4 and we manage with senna and enemas (eventually peristeen). I am of the opinion that the colon does need to remain “cleaned out”. I really want to make sure that her colon does not stretch out in any way. At our last appt, our nurse actually commenting that her tone/sphincter had improved dramatically and I think a large part of that was keep her unconstipated. Once myself, her nurse, and doctor did not think she was constipated at all and an x-ray showed an impaction so I always assume that she is more constipated than I think she is.
MrsK, sounds like you are being very thoughtful/intentional about managing Z’s movements. At what age do you plan to start the peristeen?
Your comment has me curious now. Not being constipated and having a cleaned out colon are, to my mind, not really the same thing. So if you’re really trying to keep an empty colon, how do you know when you’re successful?
Let me preface by saying, I am no means an expert. I would judge whether or not she is cleaned out enough by two factors: staying clean in between movements (it sounds like this is the case with Z) and the consistency of the stool. To me, paste is too firm. I look for oatmeal like consistency. That shows me that she has had the right fiber/water combination and it easy for her to pass. You mentioned not the firmness showing you that loose stool isn’t passing over an impaction. I also try to avoid anything too watery: the right amount of fiber bulks up the stool but not too much. If she is passing her dinner from a day and half previously then really she may be fine. I’m not sure. Personally, I would try to soften the stools a little but again, I’m no expert. 🙂
One of the things that keeps me from getting too eager with softer stools is that their current consistency is firm enough I feel confident she’s not constipated and just leaking around a blockage. Also, if you’ll excuse me being graphic, I can often tell that she is passing what she had for dinner a day and a half ago – say if we had carrots, for example. So I feel ok about that aspect. But, part of the reason I ask is because I know there is room for change on this front, and I’d love to know more just generally.
I hope we can start the Peristeen somewhere around 3. Because we use suppositories now, usually twice a day, I can’t imagine it will be that big of a deal to her and I’d prefer to start while she’s still young enough to be unconcerned about the whole thing.
We go to clinic in May and should see the GI nurse then. I’ll be curious to know what she says about it.
Lauren is 11. She used to never stay clean, no matter what we did. We had a modified MACE procedure done in 2013. We now do a saline flush through her bowels every night for 30 minutes. For the most part she stays clean all day. Sometimes, like when we go camping and can’t do our routine, she will have accidents and we take several days to get back on track. It was a horrible surgery for us and a 2 year recovery. We are just now seeing light at the end of a long tunnel.
Mira is 8. Constipated most of the time. Not regular. She is allergic to everything, so diet is really important but also her downfall, since the foods that would loosen her up, she can’t have. We love DigestZen oil blend for helping with her constipation. It works great, but still no set schedule or time, and she is in diapers still. She looks like a 3 year old (and has autism/FAS/etc, so I have not been strict about getting her out of diapers, but I need to start thinking about that.
I should also say that Mira came to us with a prolapsed rectum ,so severe that none of our american doctors had never seen such a thing. I changed her diet immediately and after nearly 2 years it was reversed on its on. And the foods that usually loosen stools for others do not for Mira, but the foods that work for her would do the opposite for a typical person. We have determined that the extent of her brain damage has created this challenge. For example, she does not feel hunger or fullness at all. I have to be very strict about her intake. She also has never vomited. In 8 years. I wish I had that skill:)
So how does Lauren feel about the MACE now? Did you decide based on the fact that you just couldn’t make anything work? A very valid reason! Just wondering if there were other factors besides strictly that. Did she actively want the surgery? Did it seem that the problem was just too high up inside her intestines to be reachable with a normal enema type program? I assume it does let her be independent, which has to be huge!
Gosh, poor Mira. Allergies are horrible! What an added burden to not be able to be hungry or full. Is she mature enough yet to be able to understand how to cope with that? Does she ingest the oil or is it topical? Is she aware of being constipated or is that sensation dulled also?
Sorry for all the questions!
I am so sorry I did not see this!!! I need to figure out how to get notifications on my phone for the days I am not at my computer. Lauren feels just OK about the MACE. She gets frustrated that it has to be a nightly routine, usually when she wants to play with Kimberly before bedtime:) We have a little step stool for her to rest her feet on, and let her watch a movie or play a game on our tablet. You can also get toileting chairs with trays, perfect for coloring. Yes, she really did want the surgery. We prayed and talked about it for a while. She does like that she now is clean all day, but the complications and multiple surgeries following it due to infection, rotting chait tube, scar tissue creating channels for poo to go,etc have not been fun. I think we are done with that now, though- and we were told that our situ never happens, it is rare! We really couldn’t make anything work for her, at least not that would keep her poo-free during the day, when she is social. That was important to her. We tried diet and exercises, etc.
Mira take DigestZen a drop under her tongue and we rub it on her belly if she feels “sore” which for her means constipated. She has some pressure, but doesn’t really understand what it means. As she gets older and understands more, she can hopefully train herself to understand that feeling. As for hunger and feeling full- we really struggle with that. Mira has great taste buds. If allowed, she will eat 12 donuts at once without stopping. She doesn’t feel full and she doesn’t vomit. See how dangerous? And because of her autism and FAS, if she is enjoying something, she will not stop. I am constantly trying to teach her about self-control but it is hard when she doesn’t understand. When we first adopted her and had no idea, we were shocked at the amount that her little 18 pound self ate, I was very confused! Until we saw a geneticist who explained FAS and saw Mira’s brain scan.
A local SB group recently had a thread going about the peristeen and I thought I would share a new perspective. One of our local doctors does not want to advocate it and his thinking is that the cone is adjustable in the sense that you only insert as far as in natural/comfortable. However, since the peristeen has an inflatable balloon, it could cause stretching to the sphincter and decreased tone by too much forcing. There are no long term studies on its effects on the body. From what I have heard it is more effective than the cone but something to consider, for sure. I’m not sure what we will decide.
It is my understanding that the whole reason that those with the MTHFR defect need to take folate instead of folic acid is because their bodies cannot convert folic acid (which is synthetic and not found in food) into folate. And here is where it gets important. Because the body cannot convert the folic acid, it has nowhere to go and builds up to toxic levels in your body.
The authoritative website on MTHFR is run by Dr. Ben Lynch and is mthfr.net. The site has a wealth of information.
I only spent 30 seconds searching because I’m in a hurry, but here is an excerpt I found:
“Those with C677T MHTFR mutations do not process folic acid into 5-MTHF….
If folic acid does not turn into 5-MTHF, folic acid levels build up. Elevated folic acid has potential to stimulate pre-existing cancer cells.
That said, it is unwise to provide supplemental folic acid to anyone with MTHFR C677T mutations.”
Hope this helps!
P.S. The recommended mega dose of methylfolate is NOT 4mg. I know you didn’t say that. But I just wanted to clarify. I just did a quick search and couldn’t find what Dr. Lynch recommends for those trying to get pregnant. But I know that Chris Kressler, whom I respect, recommends 800-1200mg of folate for those trying to get pregnant.
Here is his article on the subject. The recommendation is in the very last paragraph.
That’s interesting. I thought it was actually inflated a little beyond the actual sphincter, no?
If you already have so little tone that you have no control… Does it matter? If it takes you from a loss of say, 75% or 80% to 85% or 90%, does that have any practical implication in someone’s day to day? It’s isn’t as if we are talking about losing continence. Or do I misunderstand something?
One of the things that concerns me about an enema is that it’s seems I think would be so much more challenging to self administer. That and they don’t seem to flush as far and so don’t provide as much relief from accident. To me that has more practical, long term consequence than overall sphincter cobtrol. The social/psychological aspect of this whole process seems at least as significant as the medical, maybe more in some circumstances. I mean, who wants to be 15 or 25 or more and have to have someone help you use an enema or always worry about leaks.
I don’t know. Maybe I really am overlooking something. Maybe giving yourself an enema isn’t as tricky or messy as I imagine. But from what I’ve read, people who’ve switched saw a very big improvement in how they go about their daily routine.
Was there more insight that this doctor or anyone else had to offer. Had he seen in be problematic in SB patients? Were there families there who use it?
Thank you for sharing! I wish we had a local group, but we don’t. I’m always so grateful for you ladies sharing your resources here!!
I’ve been thinking about this a lot. I have a big long comment that I haven’t finished working through myself yet. So until then, I have a question. It seems to me that there are two issues with our kiddos (if I’m simplifying things too much let me know). When it comes to just constipation (not continence) it seems that the first step is to get the stools to the proper consistency. Our bodies need the proper combination of water, fiber and lubricant. And this combination is probably a little different for everyone. I found it interesting that most laxatives (other than the stimulant category, like senna) are just putting more water, fiber or lubricant into the bowel.
All this to say, let’s say we can get our kiddos bowels to the proper consistency using diet & supplements (laxatives). Then we look at where the function is for each kiddo. And that is where I get fuzzy. I’m wanting to know how many different functions there are to move food from the stomach to the diaper.
So here is what I came up with and I am really wanting everyone’s input:
Peristaltic action – like a snake moving food through the bowels
Sphincter control – keeping it in and letting it out
Then there is the final push (what is that?)
And is there more?
Yes, its inflated beyond the sphincter but I can see how it would apply pressure/potentially stretch.
The doctor is our SB ped but I have not personally talked to him about it–plan to next appt. He has concern for the long term effects but to my knowledge has not seen those effects yet. The families who are using are very happy with it.
I am in agreement with you about social vs. medical. Absolutely. If it was peristeen or nothing. Absolutely peristeen. However, we have a good (but not perfect) system with the cone and I want to make sure we can’t just make slight adjustments to make it more reliable.
Regarding sphincter control: I do think any amount could actually effect every day life. Even with a great system like the peristeen there can still be stomach upsets, etc and control would be very helpful.
Thanks so much; that is very helpful! I will read up on all those sources.
That’s really very interesting. I’ll be very curious to see what he says when you talk to him.
As far as the other goes, I am, of course, just thinking about Z. While she may technically have some small response she really has zero sphincter control. None. It’s another reason I’m a little cautious about working on softer stools. I fear we would be back in newborn diaper rash territory.
I’ll definitely be doing something more reading though, and expect more will be known in a couple years as well.
Kinda of odd because digestion wise, every thing seems to work pretty well up until then end, literally.
Ok, read the article by Chris Kesser but the recommendation he gives for the amount of folate was not for women who had previously had a child with a NTD. So, I am thinking that we do need to take additional. I’ll do more research on it but I would rather take too much than too little.
Hmmmm, with folate I would assume the dosage would be the same either way. But that’s just me. I have my theories about folic acid.
You should email Dr. Ben Lynch about it. I would be VERY interested to hear his response. I think it would be very informative, for sure.
I was thinking this today and found this Page. http://www.mydr.com.au/babies-pregnancy/continence-in-spina-bifida-bladder-and-bowel
Some of it is basic, but it was thorough and simply stated. It certainly talked plainly of how bladder and bowels work. I thought it might help.
What a great link! Thank you so much. I’ve looked for similar information, but never found something so thorough, yet concise.
I loved the description of the pelvic floor muscles in particular.
I have to tell you. I still hold out so much hope that we can make great strides to improve our little ones’ function over time. Perhaps I’m overly optimistic, I don’t know. Time will tell, I guess.
I’m going to write a post about what I’ve been thinking.
I want to share what I learned about laxatives. I mentioned in an earlier comment that I did some research on laxatives. Well here is what I learned.
Laxatives fall into a bunch of categories. But the more I read about all the categories, the clearer it became that, for our purposes, they fall into just two basic categories.
The first category uses some food or supplement to add fiber, water or lubricant to the bowel. I thought we could call this category Supplement or Diet or Consistency. IKD?!? I’m open to suggestions for a better name for this category.
The other category is stimulant, which is the actual category name found online.
1) Stimulant laxatives stimulate the peristaltic action of the bowel, to keep things moving. I picture it like a snake swallowing something. Senna is an example of a stimulant laxative.
2) Supplement/Diet/Consistency – Those that add fiber, lubricant or water to the bowel or some combination of the three. This category falls into a lot of sub-categories:
a. Bulk Forming – add fiber (psyllium husk)
b. Lubricant – add mucilaginous substance or oil (slippery elm & fish oil)
c. Emollient – add water & oil
d. Hyperosmotic & Saline – cause the bowel to retain more water
I found these categories very helpful.
Fruit-Eze falls into the bulk forming category.
Molasses falls into the hyperosmotic category as does Magnesium & Vitamin C. Basically high quantities of certain minerals draw water into your bowel to flush the excess minerals out of your system. That’s why sometimes the prescribed dose will be “take it until you get loose bowels, then back off a dose”. That’s how chlorophyll & folate work too. Basically your body uses what it needs and when it gets more than it needs, it pulls water into the bowel to flush out the rest (to prevent toxicity).
Btw, there are both natural and synthetic forms of most of these laxatives.
I’m of the opinion that all the categories & subcategories of laxatives listed above are safe and helpful when used in natural forms. It’s the synthetic drug forms, not found in nature, with a host of side-effects, that scare me.
I hope this is helpful.
So the holidays took over and I never got around to doing the helichrysum and gota kola/centella until January. But starting on January 12, we massaged the helichrysum into her legs and the gota kola/centella onto her scar. Here are the results after 4 weeks:
Her scar looks the same.
Her ankle diameter measured slightly smaller, which was confusing.
Her knee diameter measured slightly smaller, which was also confusing.
But her feet grew by a whopping 1/4″, which is pretty significant for her little feet.
And I failed to measure knee to ankle length. I didn’t even think about it. But I think that was the most significant growth of all. At least that’s what it looks like from the before and after pictures. And that would explain the slightly smaller diameter of her knees and ankles as well.
The most exciting part is that her toes and ankles started twitching early in the process. And now she moves them regularly and even seems to respond to touch on her feet by pulling away. I still don’t think the movement is purposeful or even voluntary, but it’s less spastic than it was early on. It looks more natural, but I’m not saying she does it intentionally. Does that make sense?
And I’m fully aware that all of this could have just been a result of a growth spurt too.
I’m out of the helichrysum, but as soon as I can get more, I’m going to switch treatments and put the helichrysum on her back scar (so excited about that) and the gota kola on her legs.
So I guess I’ll report back in another month or so.
Just one more. Look! No hands!!
Very exciting! Even if it is just growth, or the benefit of massage generally, what a wonderful thing!
Its very interesting. We’ve been on again off again with “the great coffee experiment”, which I’m sure is a stimulant sort of laxative. I have to say, it does seem to make some difference, but not a completely predictable one. Or, at least, not yet.
Ultimately I think we certainly can improve things, but it still remains individual and a walk down the same path of determining what helps our little ones produce a stool that is passable, and then figuring out where they need help to actually pass it.
That link above also included some info on bladder and possible surgeries. I had no idea they could insert a synthetic sphincter. For Z, sphincter is the key for both bowel and bladder. She’s a bit too young yet to climb on a horse, but there is a hippotherapy place here and I’m very interested to see how young she can actually start and if it won’t help both thing for her.
So cute. What a great toy/tool. Look how big she’s gotten, and as adorable as ever.
We are still having so many problems with Tillian’s feet/boots/AFOs/shoes. I”m wondering if I bought her some soft but super snug shoes if she could benefit from something like this. Thanks for the tip!
Loving the Tuskihosi. It might be worth looking into for this purpose. They really are structured to help combat pronation and support ankles and feet in a proper position.
I looked into them back when we got our AFOs, but the smallest size was a size FOUR! Am I missing something? Are Z’s feet that big already? Pooka wears a size 2 WITH AFOs on!!!
We do have her in 4’s, and they are too big. At one point I thought I had found some infant sizes but didn’t by them and can’t find them now.
And, in any case, once she started standing consistently her feet grew exponentially – like half an inch!
Point being we started her in 4’s and they were much too big but it worked ok anyway since we are talking about standing and not walking.
And yes, the snow is melting, the sun is out and the lettuce is poking out in my garden.
We sat outside for the first time today since Fall.
Well isn’t THAT interesting. Sure enough, coffee promotes peristaltic action. I knew it was a laxative, but I wouldn’t have guessed that it was a stimulant in the bowel sense. I guess that is part of why coffee enemas as so effective. Hmmm… You learn something new every day.
I’m excited about hippotherapy as well. Seems to help a whole host of things – balance, pelvic floor, reflexes, confidence. . .
Awesome! Any movement, voluntary or involuntary, has to be a really good sign. Yay for movement and growth!
So cute! What a little daredevil 🙂
Watch out Tour de France, here comes Z!!
Great post! This is so true. I am so thankful to have found this board and finally some alternatives to the mainstream recommendations. It has not only helped my sweet Caroline (yay, no Miralax!) but has also helped my family. We have been more committed to healthier diets, more exercise, healthier bodies, healthier minds. Thanks for this great post. I look forward to reading the articles soon!
Great discussion! Sorry I am super late to join in and this is probably no longer relevant, but thought I would also share about Caroline’s bowels. We are at a pretty good point with her bowel management now. Caroline is 17 months, so we are not yet concerned with continence. She seems very sensitive to Ditropan (first became constipated 2 days after starting ditro at 4 mo old and exclusively breast fed). She takes a daily combination of Fruit Eze, fish oil and molasses. Her stools are usually formed but soft (like soft play doh), she has 3-4 movements a day and is clean in between. She occasionally needs a glycerin suppository. She has never shown constipation on her imaging studies. She does seem to have a tiny bit, but certainly not all, of her anal sphincter control. She is still breastfed and drinks expressed breastmilk from a cup. I am very nervous about switching to other milk (cow, goat) for fear of constipation, but she does eat some cow milk yogurt without obvious problems.
Overall, we are very happy with where we are at right now. I don’t aim for runny diarrhea. I don’t think a squeaky clean colon is natural or necessary all the time. I do believe in preventing constipation and the fallout – more UTIs, megacolon, etc. I don’t know what the perfect answer is, or if there even is one, but my gut (pun intended!) tells me that less, especially when it comes to drugs, is more.
I don’t think you are late at all! I’m glad this thread keeps surfacing. It just helps to keep the topic going.
It sounds like Caroline and Z have very similar results with the FruitEze etc. We have sort of backed off the molasses and fish oil with no difference in the, erm… output. 😉 We’ve never had a constipation issue really. So now I sort of save those for “just in case” occasions. We are also clean between movements, but unlike Caroline Z needs help to evacuate. Everything moves steadily down and into place, just not out.
Tspar, that makes an interesting point. Z really has no sphincter control. And clearly she does not consciously move her bowels, but! If they are stimulated via the suppository, those “final push” muscles clearly work and everything moves on out just as it would for anyone else.
Tracy, Z still nurses several times daily. I have not had issues with offering her some cows milk. I don’t give it as a replacement, but she does get some – on cereal for example. (If brother’s cereal has milk then hers dang well better have some too!!) We’ve been eating yogurt for ages with no issue. I’m actually surprised that would pose much change for you just because of live cultures etc. making the digestion of that totally different than just plain milk.
Thanks for your input!
I’m so sure this is right. And it actually is the companion to something I’ve always thought. Which is that much of what used to be true, and that still is out there to some degree, about mental development and such has to do with a complete lack of opportunity and a presumption on the part of various professionals, that our kids were a bit of a lost cause.
When we were Boston last summer for follow up on our ETV Dr. Warf said something to me that really stuck. He told me that “it used to be” that the medical community felt that when they were babies, just recovered from back closure and hydro management, that point was the best they would ever be and it was all downhill from there. He said that, of course, that is absolutely NOT true but that a lot just wasn’t understood. That if we see any deterioration in Z at any point it isn’t just what happens, it would absolutely be a sign of something wrong and we should react swiftly.
I think we all know this, in the back of our heads. But I see it as influencing so much. If a child was born who was only expected to get worse, there would have been no push for therapy. There would have been no reason to pressure schools for better or equipment companies for more. And if you were the child in that situation of COURSE you would not have developed normally. OF COURSE you would have had issues and lack motivation to be active or engaged. Because why? Clearly you are all broken and headed for the heap.
I am so grateful that we are parents of SB children at a time when medicine has advanced, stubborn, wonderful patients and parents have insisted on better anyway. I think we have such opportunity to reverse some of the trends (i.e. lack of physical activity) that still skew the averages.
I’m also really aware of how much I want to be sure that we (I) do this in a way that NEVER communicates to Z that I think she needs “repairing”. She’s not broken. She’s not substandard. It’s just a thing she has to deal with. I’ve had my things too. I read a great quote last week. It was from a totally different context but the writer said, “I’ve never been one to use the ‘special needs’ term. It’s kind of meaningless. I have special needs too, they’re called Diet Coke and Ativan.” (Fab blog, if you are interested. http://fosterhood.tumblr.com/ ) I really, really feel the exact same way. Z isn’t my only “special needs” kid, and 20 years into it, I have to say I really see the importance of exactly that attitude.
That’s the long way of saying I think we have joined the SB community at a fantastic time and by putting bodies and minds to the positive we can make a huge difference in our kids and their outcomes both physically and beyond.
I completely agree. Just because they are born with their condition, rather than developing something later in life, doesn’t make it any more “special” or “difficult”.
We have accidents, we develop health conditions, we all have “special needs” of some sort or another.
My older daughter’s autoimmune condition which she didn’t develop until just a few years ago is much more painful and difficult for her to bear than little Pooka’s Spina Bifida. Pooka has NO IDEA there is anything wrong at all. She is a happy, silly hilarious little doll face clown. 🙂
Hi all! Haven’t been in lately, Meredith had a quite extensive surgery on both feet so we spent two weeks preparing for, being in, and recovering from the hospital. I thought I make a comment on this thread because poop is my favorite subject! 🙂
From about 14 months until she was 4.5 we had no idea what was “wrong” with Meredith, and from about 18 months on she was constipated. I just didn’t realize how badly. We tried every laxative type thing at walgreens, and then were put on Miralax by a (clueless, for many reasons) urologist. Then we moved up to Fleets enemas on the recommendation from a (clueless again) GI. Until finally I/we figured out all what her problems were and I hooked up with the BC board and learned about Cincinatti. I think Meredith’s basic problem is very sllloooowwww motility. If we skip one enema day, the next day we get lumps of hard coal. So her stool sits up in her colon getting sucked of water and then builds up and builds up. When she had the initial contrast enema at Cincinatti, I never SAW so much poop, and that is after having been on Miralax for a year and a half and thinking I’d seen it all with pooptastrophes.
So for now, I’m happy with our bowel management routine. We do enemas six days out of seven. As long as poop is coming out and she doesn’t have UTIs or urine leakage, I feel good. I am doing the d-mannose powder too, but no other supplements. She’s on Ditropan for her bladder, and singular for allergies. Just having two medicines and one supplement is like heaven for us, because for a while she had like 6 medications and 3 supplements and it was very difficult to coordinate all that. We don’t do anything specific with her diet.
Eventually I am interested in the Peristeen. Does anyone know if that’s being approved by insurances yet? I think there will be a time soon when she will want to manage her own bowels, as opposed to laying in the bathroom floor with either me or especially her father putting a tube up her bum. For now it’s ok, but … Or, conversely, if she decides she’d prefer the MACE someday, I am fine with that too. I definitely see potential advantages. But for now, I’m viewing it as I’m viewing pierced ears. I’m not putting unnecessary holes in her body unless she asks for it.
I love the pierced ear analogy! 😉
I actually am hoping to start the Peristeen with Z early. As in, maybe 3 years old or so. I know that is not the norm, but I also know it has been done. I sure do struggle to find info on it though. There is a lot of chatter about how expensive it is, but I have yet to see a price tag associated with it. We are certainly not rolling in cash, but “expensive” is kind of relative to both what you have and what you want.
I’ve only found one study online about it in pediatric use and it was for kids who did NOT have neurogenic bowel issues, so it was interesting but not directly applicable.
I also read some older threads (2010 or 2011) where adult users were complaining that the balloon was bursting internally. I have to assume that has been corrected and I also think I read, but can’t be sure where, something about them designing a catheter for children. As we get closer I may reach out to them to get more details.
What a frustrating journey for you guys! I’m glad you are at least traveling with a map now!!
Actually, I think they can replace a sphincter. One of the (five) pediatric urologists we saw (who was good, but not good for SB) said to me “if her only problem was her sphincter wasn’t working, I could replace that”
So, there is something to spend the next couple of years researching … 🙂
I just saw that somewhere! Nice to have you to confirm it. It would be wonderful if that was all it took!! We will see…
Following this thread too! I described Meredith’s whole bowel stuff on the other thread. But I did want to mention this. Cincinnati taught us enemas with a balloon catheter (a big Foley). I still am not clear on the preference of a cone vs. balloon, but whathave you. Anyway, in the training they mentioned that a typical kid would need 20 to 30 cc’s of air to inflate the balloon and keep it lodged in the rectum. Meredith can take over 60 cc’s of air in her balloon. Anything under 50 and it pops right back out due to such low sphincter tone.
I am seriously considering going back to Cincy when she 8 (which is the age they recommend starting peristeen) for the whole program over again. I found it that helpful.
Wouldn’t the sphincter problem be due to lack of innervation, not sphincter function in and of itself. So replacing it might not fix the problem? I’m hoping I’m wrong, but that is how I understood the problem.
Oh yes, duh.
I’ve been reading a little about this. And the answer is yes and no, I *think*.
So yes, that is, I’m sure that is why there is an issue. But the replacement appears to work on its own to a large degree. It has a small fluid filled cuff that is the new sphincter, a pump and a float, like you have in a toilet or an engine. The float is inserted in the bladder, the cuff around the urethra and the pump just under the skin in the pelvis. It is the interaction between the float and the pump that largely drives the function.
Based on that my impression is that it would allow for some sort of timed bladder management. You certainly don’t gain nerve function, so I don’t think it would allow her to know when she needs to void. But if it allowed her bladder to fully fill, then you could set an alarm on a watch or whatnot. I”m still trying to read but my time is really fragmented just now.
It would be wonderful it it works for us. It is a very minor-ish, low risk sort of surgery. There is a failure rate on the device, but not a super high one. And the success rate of the procedure is very high 80%+ with the “fail” being that a need to cath. Either way it sounds like a win to me.
So far these have been the most interesting links. It does seem that this would only be an option if everything is functioning normally EXCEPT the sphincter. So, clearly not a one size fits all option. Still, very interesting reading.
Tspar, lots of use for this one in spinal injury patients where things were functioning fine and just this one aspect is lost, but also comes up with myelodysplasia a lot. So it doesn’t appear that lack of innervation is a factor.
Man, then things I’m learning about biology are amazing! And not what I ever expected to do once I was out of school…
I want to throw in a fun little something here- After Lauren was born, we went to our mid-wife and told her we would like to try for another child. She, of course, put me on high dosage of folic acid. I got pregnant right away with identical twin boys. After the boys were born, I received one of my Twin Magazines and in it was a medical article stating that high dosages of folic acid increased the chance of having multiples. Haha! That was a fun bit of info. I wouldn’t change a thing:)
Adorable!!!! What a cutie-pie!!! Shoes have always been a big issue for us. Wait until your girls are pre-teens and want cute shoes rather than clunkers. And they have to fit over AFOs. It is an all day shopping trip for one pair of shoes. Converse Tennis shoes have been the best as far as casual shoes go. We still don’t have a good dress shoe.
Great post!!! I really loved how you worded this, “A body that is clean, balanced and healthy can focus on growing and thriving. A body that is toxic, imbalanced and sick can only focus on trying to get well.” I’m such a big believer in adequate sleep and good nutrition, as little medication as possible. Every time we go to SB clinic (once a year), the team of drs is very surprised by us. It used to confuse me, until I began to understand why. Many parents of SB don’t do research themselves, they instead let everyone else tell them what to do and how to do it. Many parents are scared and tired and confused and looking for simple and easy and quick help. Natural support is not easy or quick- it usually takes a lot of trial and error. Letting your kids with SB exercise can be scary, I know I want to put mine in a bubble. Giving your kids the power to catheter themselves, take care of their toileting, etc can be hard. It is SO worth it, especially when I see the surprise and joy on the SB clinic drs faces, because we have made their day by being the healthy ones who are not overweight, who are not struggling very hard in school, who are not dealing with multiple side-effects of medicine. It’s SO WORTH IT!!!
What an awesome project! Those wheels make so much sense. Kind of crazy that no one thought of it before now!
Maybe if enough healthy, thriving “naturally-treated” SB kiddos pass through their clinics, they will at least think twice about it.
I have such a strong desire to help people. I used to think if they only knew, they would all jump on board. Now I realize that is not true.
But my hope is that we can at least make the job easier for those who do want to jump on board.
So if the patient is actually activating the pump manually, then what is the need for the float, I wonder?
When you first explained it, I thought you meant that the float controls the pump. And I thought, well that sounds scary. A little miscalculation on input or timing and you’ve got an involuntary “flush”.
But then the second link you sent made it sound like the patient controls the pump. So what would be the purpose of the float, I wonder? Does it start beeping? I’m kidding. Can you imagine? What’s that beeping? Oh, that’s just my bladder float indicating I’m full.
Seriously though. If there was some way for the float to notify the patient that the bladder is full. Then the patient manually activates the pump. Bingo! That would be AMAZING!
Totally amazing, compared to what happens naturally to my DD now (if she’s not on Ditropan). Automatic flushes randomly, with constant dribbling in between.
Can you imagine a high schooler sitting in class beeping? LOLOLOLOL!
I was thinking along those lines myself. I was thinking specifically about being on a date. Ha!
You girls crack me up!!
The pump has to be manually activated, and then you have 2-5 minutes before the cuff re-inflates. So in a person who could feel the urge to void, they could simply activate the pump when they felt the need and got themselves to the bathroom. In our case, we would have to use a timed approach, just like many other SB kids, where she learned to go every X number of hours, activate the pump to release the cuff and void and then carry on as usual.
The float is there to help regulate the pressure on the cuff when it is not being deflated for voiding. I understand this to mean that pressure increases in response to the amount of urine in the bladder. No need to have it clamped extra tight under lighter pressure of fluid.
Of course, I don’t know if this will be a suitable/viable option for us or not. I still find it so fascinating!!
That’s not settling! The girl herself is a gazillion times cuter than AFOs, no matter how cool they are!!
Very interesting. I can’t wait to see how it goes when you get them!!
She is so pretty and looking so grown up! That is just wonderful that you have a orthotist who knows what he is doing! I’m sure the new afos will be drastically better than the pair now. I’m really not sure what processes our orthotists have gone through to make Claire’s braces. Our orthotists have seen lots of kids with SB and the braces do seem to look like her feet inside with the build ups to make them flat but I have never heard anything about the 3D digital files–that sounds pretty advanced! Excited to see pics!
I’m glad you got someone from St. Louis Shriners. Everything I’ve heard is they’re awesome. We’re about equidistanct from St. Louis and Chicago, and we go to Chicago, but have friends who go to Shriners in SL.
To hijack the topic, what I don’t understand is why people (doctors, therapists, orthotists) who don’t have SB experience can’t just say “this is out of my league, and you should really go to X” Sooooo frustrating.
Ok, first off, she is toooo cute. I love her curls and her expressions! What a doll!
Really interesting about the AFOs. The 3D digital images/printer options sound amazing. Certainly sounds like it has so many advantages over the standard case and mold technique. Can’t wait to see the final product. This also made a lot of sense to me as to why Pooka had so much trouble with her first set of AFOs and Caroline has not had as much trouble – Caroline only seems to have dorsiflexion as her issue to correct and it sounds like only one “problem” = ok for standard AFOs. Hmmm….something I will keep in mind, though, if problems arise. Thanks for the info!
Also, I know Pooka had issues with shoes staying on with her previous AFOs. A friend introduced me to Plae shoes. Have you seen them? Too big for Caroline (smallest size is 8, I think), but maybe a good option for the future? http://www.goplae.com (please excuse if this is already part of the SBN equipment list…)
klgs24, I completely agree with what you are saying – I think some doctors/therapists are afraid to admit when they do not know something. Maybe pride, maybe a product of our litigious society. *sigh*, I think the only thing to do is keep asking questions, never settle for something that does not sound right to your mommy gut, keep reading, keep up with these helpful boards of knowledgable families. And the fight goes on and on….
Wow! just saw all the shoes in the “equipment” section. Yay. My dd was just measured for AFOs today. This will be our first pair, as she just had pretty significant surgery to both feet.
When her casts come off, I guess I will have to have some shoes to bring, but I have NO idea what size her feet will be. Wow. Lot’s to think about for me here.
I’ve done more research since talking to both NDs about Belladonna. Belladonna only appears to be sold in homeopathic form, probably due to it’s poisonous nature. The homeopathic form wouldn’t have any of the poisonous compounds at all. So that made sense to me. I haven’t asked Dr. Yarnell or my ND specifically, but a homeopathic belladonna product would be the first thing I would try. I found this one in particular:
I don’t understand *HOW* homeopathic products work, but I have experienced their results. I’ve used a lot of them, but my most dramatic experiences have been with Apis when used during an allergic reaction. Truly remarkable!
So on the one hand, I feel completely confused on how a product could work when it doesn’t really have any of the actual ingredients (thus being safe for belladonna), but on the other hand they are hugely popular products that really seem to work.
The Swanson product is cheap, safe and it certainly couldn’t hurt.
Just my thoughts 🙂
I am very curious if you tried that product from Swanson, or if anyone has.
I am brand new to this site, but WHAT AN ANSWER to prayer!!
I will post an intro soon!
Hey Denise, still waiting on that intro! 😉
I would love to talk bladder meds with you. I wish my daughter was older so that I could start experimenting, but I wouldn’t know if they are working or not, so I am waiting to do a true experiment when I can use cathing or potty training or diagnostics to be able to gauge the results.
Yeah!!! So glad you are here!!!
Regarding the Swanson product – not that I know of. Funny you ask because I found another interesting bladder product today in the office of our Bowen therapist.
Is your little one on oxy/ditro?
Just out of curiosity, how did you find us? The site exploded today with new members & new email subscriptions. Was it posted somewhere?
By the way, I totally feel your pain on this. How great that your doctor is so open to anything!!! But how scary that your doctor is leaving the decision up to you!!!
I just reread your post. Yarnell did not mention anything else and I have no plans to see him again until things change. I could try emailing him if you wanted to give me a list of questions.
Thanks, that was helpful! Like I told you before, the cough medicine I give my son has Belladonna so clearly there are safe forms, so the homeopathic version makes a lot of sense. I will def. look more into it! If you were to email Yarnell (don’t do so on my account but if you happen to in the future), I would be most interested what kind of Belladonna he would recommend–like would he approve of the version you linked?
The more I read about it, I would be shocked if the belladonna in your cough medicine wasn’t also homeopathic. Does it have a number letter combination after it like 3X or 30C?
I’ve done some more reading and there are two other kinds of natural products that address urinary incontience in general – herbal blends & Chinese herbal blends.
I spent a good amount of time reading some articles on LEF (Life Extension Foundation). I love this company and have used many of their products for years.
Here is a 3 page article on their Chinese herb product:
And here is their article on pumpkin seed extract:
But there are tons of other sites that have products with either homeopathic combinations, Western herbal combinations and Chinese herbal combinations.
The studies cited in the LEF articles showed significant improvement in general incontience, but would that work for neurogenic bladder? I have no idea.
Yes, you’re right, the cough medicine says “3C”.
I briefly read over the chinese medicine article and it makes a lot of sense to me. The concept increasing circulation and overall body healing seems similar in concept to the Bu Zhong Yi Qi Wan we already give her. I fear that herbs that help women who only suffer from some urinary problems wouldn’t be strong enough for a neurogenic bladder–but I guess, bladder meds in general are designed for the older population. Another concern is giving her anything that effects hormones (like the pumpkin seed soy) since we have to be careful about early puberty.
Thanks for the articles and insight–keep them coming–I’ve got a lot of research to do!
In Googling pumpkin seed and neurogenic bladder I found a FB page dedicated to Neurogenic Bladder. I messaged the owner some questions. She mentions pumpkin seed specifically in one post. I will report back with her response. Here is the page:
I sent an email to both Yarnell and Dr. Geo, the NYC Naturopathic Urologist (who is also a licensed acupuncturist).
Yarnell responded that he is in Nicaragua on a medical mission, but will respond once he returns to the states on the 15th.
I asked them both about pumpkin seed & belladonna and other possibilities??? And I asked about your concern about soy & premature puberty.
I really hope to hear back from both of them.
Thanks so much for emailing them! I really hope they respond too!
So eve one year old currently on half a cap of MiraLAX and has 2 to 3 bowel movements a day. I bought molasses and was wondering the dose for a one-year-old? Also I had coconut oil at home and was wondering if I could use that instead if fish oil ? also found a bottle of adult capsules that contain the marshmallow root aloe leaf rhubarb root slippery elm and triphala it says adult take 2 a day do u think it safe to open capsule and give her some. If so how much it’s made by cleanse more renew life I found it at whole foods. I also bought jarro dophilus probiotic any thoughts ? Thanks so much
Also I now do u get them to drink the molasses? It taste horrible. Thanks so much
I put the molasses in her homemade goat milk “formula”. But, to be honest, I’m trying to back away from molasses because I hate that it makes her milk sweet. I worry about her teeth and just developing a sweet tooth in general.
If I were you I would definitely try that triphala product. I would just take the adult dose and divide it by 4 or 5 maybe? Here’s an article on Livestrong on it’s safety for kids:
The only listed side effects are digestional issues, which is the effect we are going for in the first place.
If I were starting over, I would try the following things in combination:
oil of some kind (coconut or fish, probably)
muciganeous herbal combination (like the ones you list)
fiber (organic cheerios & baked sweet potatoes are magic for us)
hyperosmotic of some kind, I would do Magnesium and/or Vitamin C, but you could do molasses too
For the herbal products, I would start with 1/5 to 1/4 the adult dose based on her weight.
For the hyperosmotic I give my daughter 100 mg magnesium and 500mg Vitamin C per day. You can up those doses until her bowels get to where you want them to be. They are water soluble vitamins and the excess is flushed, causing looser bowels.
Is the probiotic a child/infant probiotic? I’ve been told it matters, not sure why. But some probiotics have strong warnings against giving to children.
Hope this helps. I hope it’s not overwhelming.
Let me know if I can clarify anything.
Oh, and Welcome to the Group! 🙂
Those are very interesting. I have a bunch of questions:
Why do they have that ridge down the back of the leg?
Where is she getting red marks?
I understand what you mean about feeling connections, but I’m curious can she also actually feel her toes and ankles?
And how do you like them now that you have had them for a few days?
We got our new AFOs too. I’m going to go post comparison pictures.
So we got our new AFOs and they are so much better than the first. But I would say the majority of the improvement is in the padding inside and on the sole. I wonder if the same thing could have been accomplished with the original? The major difference in shape of the AFO itself is on the back of the leg and heel, which you can see in the 3rd picture.
They fit her nice and snug, but none of her shoes fit over them and we only have Payless & WalMart in our small town. So I ordered two pairs of Stride-Rite shoes, one in 4W and the other in 4XW. They arrive in the morning. I’m really hoping they work as I am anxious to give her a stable surface to pull up on. If not I will probably have to spend a whole day in the city trying to find something that will fit.
Well, those certainly look like they would fit much better! So glad you won’t have to worry about her slipping out of them anymore! Wal Mart and Payless both make very wide shoes. In the past if the braces required more than 2 shoes sizes up from her normal shoe size, I have had them remade b/c its just too hard to crawl in shoes that big. Skidders are a good option to just add some traction without adding bulk. They won’t work for crawling outside but they would work inside while you are looking for other shoes.
Wide shoes in infant sizes? Like 1-4? I’ve never seen W options in baby shoes at Payless or WalMart. Are you saying they just tend to be wide or are actually sized W vs. M?
She’s currently a size 2 without AFOs, but I had a size 4 on hand that was WAY TOO NARROW. We debated on what size to order. . . 3? 3.5? 4? We finally decided on a 4. I hope we made the right choice. I will know in the morning. I ordered these:
The Nikki comes in XW, which is what I ordered, but I actually have more hope for the Bristol as I can remove the elastic bands and replace them with laces. I can also add more velcro to the strap if necessary. We will see.
My main goal was to find something listed as WIDE that could be here by Monday.
I will update when we get them.
It seems to me that Wal Mart reg. shoes just tend to run wider than the stride rite wide shoes. Stride Rite shoes used to work for C but when she got bulkier braces, Wal Marts worked much better. I’m sure a lot of what works is just specific to the braces and hopefully the ones you ordered will work great. Thats a really good idea to take off the velcro and put in laces–I would have never thought of that.
The red marks were on the side, bottom of her feet but she has had to have every pair of braces ever adjusted for red marks so thats nothing specific to these braces. Because the lack of plastic allows for more range of motion, the ridge down the back keeps her in better position and adds more stability. She can’t feel her feet–sensation speaking. She can feel her ankles (both some sensation, as well as, overall feeling internally–will complain of pain during stretches). When she wears rigid afos, she is more apt to stand on the sides of her feet. When she wears afos with the toes exposed, she is more apt to stand toes forward/flat footed. So I’m not sure what exactly she is feeling but its clear that she has a much better sense of where her feet are in less bracing.
I am actually really liking them. They are not made perfectly and I have some concerns. One being, they are not the type of brace that would be recommended for clubbed feet. However, my hope is with these braces, she will gain more flexbility/loosen her ankles by flexing them more. Who knows? I am just maintaining aggressive stretching/massages and keeping an eye on the clubbing (and surgery later is a definite anyway). OK, disclaimer aside, she is walking really well in them. They make sense to me. The placement of the plastic seems well thought out and not excessive. So, right now, I’m really glad we have them.
That is *very* interesting that she positions better with more sensation.
How much does she wear them?
How do they differ from a recommended clubfoot brace? The exposed toes?
Ooops, that was me. I hate it when I do that. I was logged in as Admin.
Yes, for clubbed feet they should extend further on her feet. A little bit of toes exposed is ok with clubbed feet but these have more than just a little. She wears them all day and reg. afos at night.
The new shoes and the AFOs stayed on and perfectly positioned ALL DAY LONG!
I didn’t have to make a single adjustment.
Three cheers for Shriner’s & Stride-Rite!
I just realized I didn’t answer your dosing question. So sorry about that.
Doses have ranged from 1/2 tsp a day to 1 Tbsp a day depending upon the needs of the child. I just recently reduced Pooka’s dose from 1 Tbsp/day (which has been her dose since 6 months old) to 1/2 Tbsp/day. She is 16 months old now.
So sorry I missed that question.
I missed the dose question too and also how to administer molasses.
Caroline is 18 months old and gets 5 mL (1 teaspoon) per day. I am also backing off of it a bit and adding in some magnesium (Natural Calm) – now her stools are a bit too loose, so I will be lowering my dose of magnesium (giving 1/4 teaspoon per day, will lower to 1/8 teaspoon per day now) and will also slowly lower the molasses.
I administer Caroline’s molasses mixed with her magnesium, orange flavored fish oil, probiotics, vitamins, Fruit Eze and bladder supplements all with a syringe. We call it “medicine” and she takes it quite easily. We brush her teeth right afterwards due to the sugar in the molasses. She does not seem to have a sweet tooth any more so than I would expect a child of her age. I hope this helps!
Just to clarify – we are able to mix the Fruit Eze in with everything, but do need to add a little water to the mix (and we mix it vigorously to get the Fruit Eze into a suspension) so that it will be thin enough to go through the syringe. Don’t use a syringe with a rubber stopper, but use a syringe that has a larger dispensing hole – I find that the 5 mL syringes that come with most of the Children’s Tyelnol/Advil works great.
Thanks so much y’all r great I also ordered the fruit ease. I took those capsules back because it said for occasional use. I have the coconut oil already so I guess ill use that. Where do I get liquid magnesium and vit c from so I can give her that ? Ill mix the fruit ease coconut oil mag vit c and probiotic together ? The probiotic says for babies from whole foods its an organic store. Sorry I am new at all this. I guess I am nervous to give her stuff that doent say for kids
I hope I didn’t discourage you on the molasses. It really is magic for the bowels. I just wanted to be honest. I like Tracy’s plan of giving it once a day and then brushing teeth. Brilliant!
Most magnesium is powdered. The brand I have seen mentioned most is Natural Calm, which you can get at any health food store.
Vitamin C, I know there are different kinds. I got mine from our ND. MrsK, should she be concerned about what type of Vitamin C? Let me go look at mine. Mine is ascorbic acid.
The probiotics sounds perfect.
Don’t hesitate to ask questions. We’re here to help.
Oh I got cha the magnesium can take the place of molasses? That molasses is gross I tried it and gagged so did she. Poor thing. I googled natural clam magnesium and a bunch of sites sell it I am scared to get the wrong thing maybe Tracy you could tell me where u order urs and exact name so I know it’s safe. I am scared I don’t want to hurt her I have never given her probiotic either maybe I shouldn’t start everything at once. Maybe ill just start the probiotic Tom and contj is miralax until fruit ease arrives then start that for few days then back off miralax and add magnesium and oil? Oh yea what does the probiotic do ?
HI! Welcome to our little group. Sorry I’m so late responding, but clearly ya’ll didn’t really need me anyway! 😉
Tspar – I think any Vitamin C is fine. I would opt for a crystallized one, just for ease of use. It’s also easier to get a more consistent dose that way. But C is harmless and the body flushes excess readily.
Jennifer – I don’t think you should try everything at once. NOT because you could hurt her. That is very unlikely. But if you do everything all at once, you have no idea what is, or is not working. I would add one element at a time, allow a few days, adjust as you think you may need to adjust, allow a few more days etc. Once you are satisfied that the one thing is working, or at least doing all it can for her, then add something more.
Makes me laugh that you think the molasses is gross. So many people respond that they worry it will give their kids some kind of uncontrollable sugar craving, and I always think – Have you tried it??? It’s pretty strong tasting and technically no more sugary than apple juice or graham crackers. Too much sugar is a concern, but I cannot see someone developing a taste for candy from a spoonful of molasses. (Not picking on you Tspar!)
Probiotics feed the good flora that exists naturally in the gut. That balance is very important in everyone, and helps prevent an overgrowth of other flora (often that also naturally occur – varieties of e.coli, for example) that can cause irritation and illness.
Hope that helps you a little!
Here are links to the products Caroline uses:
Fish oil: http://www.amazon.com/Twinlab-Liver-Emulsified-Norwegian-Orange/dp/B001G7QG4K/ref=sr_1_1?s=hpc&ie=UTF8&qid=1426826018&sr=1-1&keywords=twinlab+cod+liver+oil+orange
Cranberry supplement (we crush it and mix into her liquid): http://www.theralogix.com/index.cfm?fa=products.theracrankids.default&dvsn=urology
Her vitamin is through her doctor/pharmacy – just a children’s multivitamin liquid.
Fruit Eze: http://www.fruiteze.com
I also have Gotu Kola, but have not been brave enough to try it yet. I don’t know why….
Hope this helps!!
Hooray for shoes that work!!! Just food for thought down the line, we were able, actually the orthotist did it, to add a strip of velcro to the existing strap on our little Mary Jane’s from Tsukihoshi (http://www.amazon.com/Tsukihoshi-BABY06-Arisa-Toddler-Lavender/dp/B004Q60L6C/ref=sr_1_6?ie=UTF8&qid=1426773191&sr=8-6&keywords=tsukihoshi+mary+jane) and they fit perfectly after that. The low scoop and the extra give on the strap were very helpful. Not pushing the brand, just the features that worked for us.
Also, if she starts standing much expect her little feet to grrrrooooowwwww! We were in infant 2’s when this all started and now she properly fits her 4s.
I saw that cool strap in the pics you posted awhile back. What a great idea. I will definitely keep that in mind for the future.
Our strap does not reach, but stride rite has a piece of velcro on the tongue that keeps the strap down. Luckily the strap isn’t necessary to keep these shoes on.
We have 3 days under our belt now. We put them on in the morning and we take them off at night with no adjustments necessary in between. And no pressure points of any kind!
To be honest, I’m in shock about how well they work.
How is she liking them? How do you like them? Still feeling like she’s maintaining better feedback? Still going well?
MrsK, yes, on all accounts. Her ABM practitioner was impressed with them and I do feel like C is getting feedback and that they give her adequate support.
Y’all are wonderful thank u so much for all the info and the links r great. I will feel better using the exact ones y’all do. Thanks again
The one at Patheos isn’t actually an SB blog. I actually follow the two above (although Wifeytini has been quiet a while) and another one that is related to foster care but includes a child with some disabilities, also not SB.
I know there are lots of families who start blogs when they are diagnosed, and then it all tapers off when things return to normal. What about the one with the gentleman who wrote the letter to his mom?
I also know about, but don’t follow, this one. http://www.holdinoutforahero.org/ Definitely SB. Aimed, at least partially, at the Latino population who presently have the highest occurrence rate. At least, I believe they do.
I think the letter you are looking for may be on the United by Spina Bifida FB page. Also The Mighty has some great stuff, but it is not exclusively SB.
Sorry I’m not more help.
Here’s another. http://erniebufflo.com/
I don’t follow, but have read it and liked it.
I’d love to include non-SB ones as well. Ones that inspire Special Needs thinking. A couple of posts you have linked to either here or at Baby Center come to mind. The one about “Assessments” and the one about us all having Special Needs. Do you remember those? The special needs one was recent on here and I’m sure I could find it. But the assessments one was a long time ago.
I say send the inspirational ones, SB or not!!!
Mary Evelyn had a guest post from The Squeaky Wheelchair the other day. She has CP. I started following because she was hysterical.
I just got an email from Dr. Yarnell. He says:
Ok I’m back and getting caught up. I usually charge $195/hour so that is prorated to the length of a phone call, and do offer a sliding scale (pay what you can afford, minimum $20). I was recommending using belladonna tincture not homeopathic (they are not interchangeable and if anything are actually used in opposite ways). The pumpkin is completely safe and worth trying, I don’t know if it will work or not. Sufficiently low doses of the soy isoflavones would be safe.
Using belladonna guided and monitored by a physician who has experience with it is different than just winging it. And this herb is safer than the drugs such as oxybutynin which are essentially synthetic versions of a compound in belladonna (atropine). Belladonna can be harmful used improperly, and can be completely safe used properly.
I am leaving again Mar 24-April 2 for a final big trip of the school year and then I’m back until July. Let me know if you want to work out a time for a phone call, which could be as brief as 15 min.
http://fosterhood.tumblr.com/ is the one about everyone having special needs. I’ll have to look for the other.
The one on Patheos is very little about the special needs and a whole lot about being a Catholic lady. So probably not quite what’s needed here.
I’d just have to go back and hunt the assessment one. She’d probably be a good blog to follow, but I don’t follow her. Did I post that here?
Thanks ladies. Now I have to figure out where to put this list. Under Real Stories or Resources? On the actual blogroll page in a separate section? Or on the websites page? Thoughts?
That is helpful. I still feel unsure and the idea of figuring out the dosage by watching the eyes dilate seems worrisome to me but I think really I just need to book a phone conference with Dr. Y. I’m sure it would be very informative regardless of what we decide. I would doubt that he gives all his patients belldonna so I’m curious which of the main stream drugs he thinks is safest. Maybe he only does belladonna? Thanks so much for emailing him! If we decide to do a phone conference, I will be sure to update!
Please keep us posted.
I’ve been thinking about you and wondering how Lili is doing? Is the senna/magnesium combo still working?
For the most part. Lili has become impacted probably 3 times since we switched to the magnesium (3 months ago), but two of them have been after we started seeing a naturopathic doctor who switched her meds up and I think we just haven’t found the right dosages. So she has had miralax probably 4-6 days in the past 3 months, not bad!
Thanks for checking in, how are y and your little one?
I think I would put them on the Blogroll in their own section. And maybe, under “Real Stories” just add a blurb and a link over to them there.
FILE NOT SUPPORTED???????????????
I want, I want, I need, I need. . . (name that movie)
Ryan is coming this weekend to work on some computer issues and I will ask him to take a look at why we are having trouble uploading pics and video.
Until then, can you upload it somewhere else and link to it, maybe?
Three cheers for Z! How cute that she loved it so much.
Was this with or without her AFOs?
How exciting for all!
Drawing a blank on the movie. ..
We did not have on AFOs. She can’t pull up with them on, and she’s been trying very hard to pull up. So lately, we have not been wearing them a great deal.See if this works.
Little Sister taking big steps!: https://youtu.be/DXgcq3hg_dE
She looks awesome! SO exciting!
It IS excIting! And her goofy dad, who I love completely, was so casual about it. Eh, he says. Yes,it’s great but we knew she would do it.
I was torn between throttling him for not being as excited as I was, and hugging him for being so perfectly confident in her.
This us the blog that had the assessment post. It was driving me nuts that I couldn’t remember!
I don’t know how often they update. On my phone it looks like it may not be vertu active. But there is lots of good stuff there regardless.
Yay!! So super cute and very exciting. Caroline did the same thing when she fist got her walker, she loved it and was so proud. Please let me know if Z’s positive attitude continues…unfortunately, for some reason Caroline now hates the walker and refuses to use it, but wants to walk constantly with hand holding, cruising, sometimes the walking toys. We have tried everything- stickers, balloons, bubbles, the cat!! Now we are just taking a hiatus :). She might just be a strong willed independent little one but this mama is frustrated!
Anyways, woooohoooo, go Z go!!
Silly Caroline! I would be frustrated too. Have you tried taking her somewhere new that she needs to be mobile to explore,with only her walker to help? I’m thinking a big shopping center or a kids museum or some such.
Maybe she just feels she’s seen it all in her regular surrounds and is happy to stick to what she likes best or feels safest doing.
Aw, she’s so darn precious. That face! And she makes it look so easy.
We’ve got a walker! Congrats to little Z! Way to go!
I laughed at your comment about your husband. Too cute!
I’m so glad to hear it! Yeah!
I’m trying to scale back on molasses and dose up on magnesium myself right now. I’m curious what dose Lili takes? Can you tell me how many mg of Calm you give her per day? (For example, my Natural Calm says 2 tsp is equivalent to 350 mg.)
We are doing very well. Pooka finally has a good set of AFOs and is finally playing around with the idea of weight bearing! Other than that, nothing new on our front. She is healthy and thriving.
Thanks for your help on the magnesium!
Hi! I give Lili 1 tsp (or 175 mg) in the morning and 1/2 tsp (or 87.5 mg) after school every day.
Glad to hear your LO is doing well! I’ll send good walking thoughts your way!
Just curious how old lilli is I am trying to find out how much to increase eve mag she is a year and I was giving 1/4 tsp a day and its not working.
Lili is 7.5 yrs and I have her on 1 tsp Calm (just the regular, no calcium) in the morning and 0.5 tsp in the afternoon. But I also alternate 2 senna and one dulcolax every morning (mon, wed, fri, sun = 1 dulcolax. Tues, thurs, sat = 2 senna) when she gets backed up, I sometimes have to go back on miralax for a cleanout but have been successful in giving 1 extra tsp mag drink.
I’m so glad to hear it!
I thought of you today. We’ve not been using our braces because Z is trying to learn to pull up, and they just don’t allow for that. I mentioned it to PT and she started talking about her love/hate relationship with AFOs. She loves them for standing and stabilizing. But she really doesn’t like them for kids learning to walk. They cause wrong positioning, crazy scissor steps, increased instability when they are without them, and the list went on. I really thought about you and how you are trying to help C get a good mix of benefits.
Now that she is walking a little, Z is really struggling with them. Her feet get tangled up together etc. We are very fortunate that she’s doing well enough, and that we were without club foot issues, that we can forego them as we see fit without losing ground. Not everyone is so lucky, I know.
Anyway, just thinking of you and all of this today and wanted to tell you I admire what you’ve been able to do to get C what seems best all around.
Thanks for thinking of us. 🙂 Braces really are so complicated. The idea behind these braces came from an orthotist who has also been a surgeon so he has a very good understanding of how the body works. I’m sure Z is benefiting a lot from getting to experience the stability of the braces and also the sense of herself without them. Even with the braces, I’m sure she will grow accustomed quickly and learn to move more smoothly in them. Seems like she is doing really great!
That’s an interesting switch, surgeon to orthotist. What a fantastic resource to have!
Braces *are* so complicated! I have to say, before now that part seemed so straight forward. Live and learn, eh?
We didn’t actually go to surgeon/orthotist. Our local orthotist actually copied a pair of the originals. 🙂
Do you have any duoderm? It really helps prevent pressure sores in areas you start to see redness. You can also ask a pharmacy for “new skin” or there are a little less effective but still useful cvs/walgreens brands of the same product. Sometimes, I will put the braces back on over a red mark, with the duoderm, as long as I can tell its not getting worse. I
I usually just try to get as much circulation to the area as possible since lack of circulation is a lot of what delays the healing. So, I use the infrared heat lamp (depending on the sore, I might cover the sore itself but let the lamp bring heat to the area, moxibustion, and make sure that foot isn’t ever cold. If its cold, then massages. Other than that, i just use essential oils, etc.
Sorry, I feel your frustration! Pressure sores are really such a pain!
Meredith had a terrible terrible sore on the bottom of her buttock right where it meets the leg. It was probably 3 inches in diameter. It was a terrible spot to try to dress and it eventually got infected. Ugh. Anyway, a wound care doc prescribed us Medihoney bandages. I guess the honey in the gel is a natural antibiotic, and the gel absorbs the wound moisture. Huge improvement within a couple of days. http://www.dermasciences.com/medihoney
Ours are 4.5 in x 4.5 in. I am happy to send them to you if you want them.
Well fancy that!!! I just happen to have a bunch of medihoney left over from my son’s burn injury last summer.
Does it work on closed wounds? Or just open wounds, do you know?
Pooka’s sores are always closed, just bright red and swollen.
IDK if it would hasten healing on closed wounds or not. We only used it on a open wound that was already infected. Probably can’t hurt tho. Maybe while she’s sleeping?
BTW what do you do about pressure sores normally besides leaving the AFOs off? My dd has a pressure sore on the bottom of her foot right now due to walking in a cast. They recasted her and uber-padded the area. She gets this cast off on Tuesday and will go into an AFO. Two weeks ago the sore looked like a closed blister with a red ring around it and they said it would probably get worse before it gets better. She just had a bunch of surgery on her feet, and this is our first time with AFOs.
I have always been so paranoid about them, that I have been super strict about not wearing boots or AFOs until they are 100% healed.
But I have never treated them with anything. And they have never gotten worse (or opened up), but they usually take 10 days to 2 weeks to heal.
This one is pretty much healed now (10 days later), but I might try emu oil or colloidal silver next time.
Camilla, you mentioned essential oils, what oils in particular do you recommend?
I’m thinking medihoney sounds like a great option for her foot too if it is an open sore when the cast comes off on Tuesday.
Oh, duh, and helichrysum for scarring.
I have seen sugar bandages of all sorts turn closed wounds into open wounds very, very quickly. Healthy, non infected open wounds, but still open. Although honey bandages are the mildest of sugar bandaging techniques, all sugar will act somewhat abrasive to the skin and helps draw bacteria (or, in my field of work, gravel/dirt in an open wound from an animal that has been hit by a car, for example) to the surface. which is why it works so well with open, infected wounds. I am not familiar with the exact product described in this thread, but would still be hesitant, without direct orders from a doctor, to use honey on a closed wound.
Wow! Thank you for that!! ^^
That is super helpful information. Thank you for sharing.
This is SO exciting! Of course, I would love to think that the next step after in utero would be to try on kids already born. I know its much more complicated than that but I really hope the science is leading in that direction. I know nerve sprouting is possible with our kids so even if they can’t have a complete “cure”, additional nerves would really be helpful!
doTerra AromaTouch–achy legs/knees
Oregano–diffuse after the baby chicks were in my laundry room!
Native American Nutritional–Immune Strength to diffuse and put on feet when fighting colds, etc
Native American Helichrysum–rub on legs as a nervine.
Juniper–bought to rub over bladder but have not tried yet.
I have been using “Scaring Reducing Herbal Cream, Quantum Derma” and it seems to be working better for scars than the essential oils, for C at least.
We don’t use these very extensively. Mostly we have verty little need (knock wood).
I use oil in the cloth wipes warmer to keep wipes fresh and pervent something unwanted from growng. Either lavender, or tea tree.
I also diffuse them through the house regularly. A lemon and ginger combo is one of my favorites. I also like plumrosa. We use birch and Eucalyptus as well as various decongestant blends if they are stuffy noses running around.
I also have a small container of coconut oil blended with frankincense, tea tree and lavender for minor skin irritations etc.
That’s about it right now.
I have a bunch of questions about the duoderm, if you don’t mind:
1) What shape do you buy?
2) Can they be cut down or do you lose the adhesive edge when you cut them? Her sore is on the back edge of her heel, which seems to be a very tricky place to keep a bandage in place.
3) How often do you check to make sure the sore is not getting worse?
4) When you do check, can you reapply the same bandage or is the adhesive shot and you have to apply a new one?
I said in a comment above that the sore was almost gone, well it is still lingering. Tomorrow will be TWO WEEKS!
This is a awesome!
The shape doesn’t matter b/c they can be cut down to whatever shape. SB clinic gives me several squares whenever I go in–I bet Shriners would give you some if you ask. They can also go on preemptively in areas she tends to get marks. I don’t ever pull the dd off to check for fear that pulling on the skin would further aggravate it. If you are going to take one off, I would do so right after a bath. They are actually should stay on several days but sometimes come off in baths. They stay on longer if you get it hot when you put it on so I put C’s foot under a heat lamp and hold it in place for a minute or so. Right now, C has a red mark and I am really trying to avoid getting her braces adjusted b/c it will essentially make the braces conform more around the foot’s clubbing. So, I am just keeping the dd on it, letting her sleep in other braces, giving her a couple hours out of them during the day, and checking whenever the dd comes off. So far, its staying the same and not getting worse.
Thank you so much for this info. I’m pretty frustrated with the AFOs vs. not AFOs right now. We see our ABM therapist (for the first time since November) this Thursday & Friday. I am going to show her all my issues and hopefully resolve some of my dilemmas. I will post my conclusions, should we come to any! 🙂
We have been having big discussions about bowels on another group over on Baby Center. We are trying to help some other moms wean off Miralax as well.
I’m wondering how its going for you?
So…. We ended up back on the Miralax train again. In February, we thought she was malfunctioning again. After a battery of tests, it was determined that she was really backed up. We cleaned her out and have been doing fine with a daily dose of Miralax, fiber, and a probiotic. It has been a long road but that is where we are right now. We are planning to start a bowel management program at 3 years old but not right now. We are so focused on getting her mobile that one more things might be too much for this momma to handle. Thanks for checking in!
If you can indeed come up with a powdered formula as easy and effective as Miralax, you will become a millionaire! Can I go insies with you? I’ll do the supervising, you do the work. :):)):):):):):)
One idea. when and if you introduce this outside of the community forum here, I would remove this line: “hat I am confident about, though, is that God has given us enough amazing medicine in nature to successfully handle this problem. We don’t need to use chemicals, with all their many side effects, to do it.” It’s off putting, espeically for people who do need (or choose to use) chemicals, (like ditropan etc). And the people over here already pretty much agree with you, or have made a different risk/reward analysis for their families. my 2 cents. Kira
How old is she?
Maybe u should add some molasses and fish oil and continue fruit ease. Eve is on all that plus magnesium she was going good now stool little hard so I am trying to figure out what to go up on. But u may need more than just fruit ease I am just learning though so I may not be much help
Enemas don’t take away the ability to eventually go on one’s own. As a matter of fact, if the rectum is mega-stretched out, routine enemas will allow it to go back down to regular size, because you are evacuating it on a regular basis, and not allowing stool to pile up, then when the stool piles up it stretches more and it’s a vicious cycle.
The reason I ask her age is because if she is old enough to tolerate sitting and watching an iPad for a half hour, I cannot recommend a cone enemy enough. It sounds so intimidating but once you start you will be sooooo glad you did. Do you think she will be able to make it to the toilet 100% of the time she has to poop? Because anything less leaves the possibility of a humiliating accident at school. And that’s just not a risk I’m willing to take. We started the cone right around L’s second birthday. Best decision ever. I went from constantly trying to come up with the perfect concoction of supplements and diet and fluids to make his poop soft but not too soft, firm but not constipated. It was exhausting. Now I NEVER think about poop. Every other day he sits on the potty for a half hour, I get a little me time 🙂 and then we are done! Piece of cake! No supplements, no watching his diet. Just the cone (with a squirt of Castile soap and some probiotics mixed in). We may try the peristeen in a couple years but we have a couple close friends who tried it and weren’t impressed so for now we will stick with what works! I should also say that the enema does not take away the ability to go on your own. If anything, it allows the bowel to heal and function better. But I’m guessing once you start you’ll never look back 🙂 Let me know if you have any questions!
I know there are multiple ladies on this board hoping to move to Peristeen in the future. Can you share what your friends did not like about it?
Ihave two friends who have tried it who have been doing the cone for a couple years with great results. But we had heard that you could skip two days in a row with the peristeen instead of just one like with the cone and that is pretty tempting. One family used it for a month and their complaints were that the balloon doesn’t stay in like it should which could have to do with low sphincter tone. (One time when it came out it actually made him bleed!) Also, there are a lot of things to do with your hands and it’s a little hard to juggle all the knobs, switches, and tubes. The balloon also popped a few times when it was inside ( I guess it’s hard to get it to just the right size without getting it too big) and that sounds terrifying!! On top of all that, they were having accidents unless they did it every day even though they can skip a day with the cone. The other family the little guy refuses to do the peristeen because it popped while they were figuring it out and he’s totally freaked out by it.
Another close friend just tried it a couple months ago. Their son is 6 and he hasn’t been on any bowel program other than supplements but they decided it was time for something more reliable so they went straight for the peristeen. Super confusing and hard to juggle and he was having accidents all the time. So after a few weeks they took one of our stock of surplus cones and tried it. They had to do it every night for a few weeks to get a good clean out but they recently switched to every other day and so far so good. They’ll probably try the peristeen again in the future just to be sure it wasn’t just beginner problems.
I’m not sure why some people have such good results with the peristeen and others don’t. I know the cone uses much more water but the peristeen has the advantage of pressure behind that water whereas the cone is just gravity. Also with the peristeen, you don’t have to hold the water in at all (which sounds appealing) but maybe those 8 minutes are really important? I don’t know. I had hoped the peristeen would be something that we could have L do on his own but it sounds like there are a lot of steps and things to juggle. We probably still will give it a try but I’m going to try not to get my hopes up.
I just wanted to chime in. I does not hurt the kids when the balloon on a foley catheter pops inside. It’s happened to us several times (since they are designed to be a single use item, quality control is a little low) and she hasn’t even noticed. this was also verified from a nurse at cincy.
I’m glad to know that. I know that the accounts I have read of adults with the peristeen balloon bursting (not the same, but similar) seem pretty peeved and at least some noted discomfort.
So glad to have your input here. THANKS!
If you are not sure if senna is working, you probably need to up the dosage. Typically, with the right dosage, a lot of stool comes out at the same time so you would KNOW the senna is working. Also, another option is what is called a baby cone. Our nurse actually designed it for kids who need to start on enemas (because other things are not working) and are too small for typical enemas. Its basically nasal bulb syringe with the back cut off and attached to a large medicine syringe. Kinda hard to envision, I know. I can try to post pics of the elements if you are interested.
She will be 15 months in just a few days. I have found an adaptable toilet seat by Rifton that I think would be perfect for her to sit on. I am trying to see if insurance will pay before I just buy it.
Camilla- I would love to see a picture!
Thank you for all the responses.
Ok, the above: cut off the back portion–like maybe around where you see the ridge half way back and inserted on top of this:
Really not sure if the second syringe is the right size. I would have to see it in person to know. But it would clearly either fit with the nasal syringe or not.
The tip of the nasal syringe is much smaller than that of a typical cone enema.
It was awhile ago we used it, but we found it very helpful at the time.
I just got home from a long day of running errands and saw your most recent comment to Carey about Lili’s age. She was 7 at the time of the post, but may be 8 by now.
As a frame of reference for you, our naturopath has Pooka (16 months old) on 100mg of a different kind of magnesium (for health, not for bowels) in addition to her full 1 Tbsp of molasses a day. So that’s a lot more magnesium than you are doing. And she is a picture of health.
I would increase one at a time so that you know which one is working. I know molasses works for me, so I personally would up that one. And nothing less than 1 Tbsp works for us. I have tried to reduce it.
But Carey & MrsK have both seen results from Calm, so that could work just as well for you.
If flavor is an issue, upping the Calm might be easier?
Please keep us posted. I don’t know if you saw my post last night, but I am trying to develop an easily implemented bowel program, so any and all feedback is helpful.
Off to make dinner.
Oh and definitely add the fish oil. It is a lubricant laxative. My theory is the more types of laxatives the better – water, fiber, lubricant, stimulant. They simulate the normal function of the bowel.
Thanks so much. I will increase molasses and I added the fish oil. I will let u know results. She has had one bm today soft but formed. Think it needs to be little softer. She is one and weaning off formula so we were doing goat milk from whole foods but she looked like allergy stuff going on like red eyes dry cough so I a changed to hemp milk do u know anything about that? She was breast fed for about one month but then she stated aspirating so we had to do formula with thicken. Probably part of her problem. Or should I find somewhere that sells raw milk ? Like unpastorised ? R u giving poka the triphala yet?
Yes, I would try again with raw (if it is legal in your state). Raw, unpasteurized has all the enzymes that can make all the difference. But you may find she reacts the same, in which case you will know for sure.
I say this because we have a farmer friend who always challenges lactose intolerant people to try his fresh non-homogenized non-pasteurized raw cow milk. And he swears he has never had anyone have a reaction. He says that people have problems with lactose because store bought milk lacks the enzymes to metabolize it properly. Pretty interesting, I thought!
I tried the Triphala yesterday, first in the product I mentioned (with the magnesium and all the other herbs) – tasted terrible. Nothing would mask the taste. So I went back to town and bought triphala by itself and tried it as well. Same thing. I think the triphala is the strongest flavor in the other product.
But I found a company that sells a flavored powdered version, so I ordered it and am going to see how that works. I am going to post all about it in a separate post.
My thoughts are that if you have truly been able to manage with just Fruit-Eze up until this point, that is amazing! I think you could easily tweak things and find a nice balance, especially with senna.
But if you are wanting to go to enemas, more power to you. I absolutely dread the enema thing myself and would try any combination of supplements to avoid them.
Please keep us posted. Each person’s experience is so helpful to the rest.
Kira!!!!! OMGosh, so nice to meet you. If it is ok with you, I would like permission to refer to you as Kira now instead of “klgs24” or “Meredith’s mom” when relating stories to my husband. “And then Tracy said this, and then K L G S TWENTY FOUR said this!” He would look at me funny and then I would say, “you know, Meredith’s mom!” 🙂
Oh and how is the “i” pronounced in your name? Pooka’s middle name is Kyra pronounced with a long i.
Camilla- thanks for the links!
I won’t start anything until I can get that adaptable toilet seat for her to sit on. This gives me a little time to mull things over.
I just need routine and consistency! 🙂
TSpar do not be afraid of the enema! I was so scared too but there is nothing to be afraid of! It is so easy and so reliable. And keep in mind that while enemas do not permanently affect the ability of a child to poop on their own, senna does. So be careful with it.
Really? I thought the only problem with senna was it loses efficacy over time. So how does it decrease function? I know it causes a normal functioning bowel to become “dependent” but I didn’t think that mattered for a neurogenic bowel that already has damaged function.
Can you elaborate?
By the way, I’m thrilled you have finally joined us! Welcome!
To be honest life happened and I completely forgot this existed! But the other day I started getting emails about new posts. It was weird… but it brought me over here!
The way I understand senna is that, yes, the bowel can become dependent and not be able to function without it. As far as what function a child has and what function would be taken away by the senna, I’m sure that’s different with every child. I don’t think its safe to assume it doesn’t matter with neurogenic bowels though since we may be taking away the one thing that child’s bowel is good at! I understand the thought process behind saying it doesn’t matter since the child is going to need some sort of “help” in the bowel department, so why not senna. But even if senna can “go” for a child, there’s no way it can “not go”. And that’s the biggest issue with continence… Being able to hold it until you’re on the toilet. So I don’t see senna as a permanent solution and it worries me that prolonged use of senna can make it so that ultimate solution is less effective. I do know one girl my sons age who used senna for years and is having lukewarm results from the cone. But who knows if it’s related. Just my two cents 🙂
Well I’m just glad you are here. Feel free to post an Introductory post. I LOVE reading those. Just select “Our Kids Stories” as one of your categories and it will show up over there as well. No pressure, though, just a thought. I am curious, though, do you still do ABM with Lewis?
We do still do ABM although not as often as when he was littler. We also do craniosacral which complements the ABM really nicely.
We do both as well. We love both of our practitioners and see results after every ABM session. She has been having craniosacral sessions on a consistent schedule since birth. I don’t understand it, but I have seen amazing results from it. A few other family members, myself included, have had sessions and it amazing how you can feel the wave and actually feel things move. The most dramatic results have always been when Pooka’s eyes go, what I call, “wonky”. One session always fixes it.
To be honest I don’t really see “results” from abm anymore. We have been doing it since he was so young that he doesn’t have a whole lot of old patterns to fix and his body just is how it is. I feel like we kind of do it for maintenance but I’m starting to question the time and money we put into it. At this age would it be better invested in something else? I don’t know.
Rather than continue talking about ABM on a bowel routine post, I created a new one here:
You make good points about Senna. I first found out about Triphala from an MS blog. Then I googled it and read an article about why Dr. Andrew Weil prefers it over senna. He said that where Senna causes dependence, with Triphala the benefits accumulate the longer you stay on it. Today when I went looking for that article I found a different one where he recommends Triphala for neurogenic bowel caused by MS.
Then two days ago when I called the health food store to ask if they carried Triphala, the gal launched right into a speech about it, how it heals and tones the bowel. Tones the bowel? I don’t even understand how that works in a normal functioning bowel, nonetheless a neurogenic one. But it sure sounded interesting.
I will do a separate post about my Triphala experiment. I just need to find a block of time to sit down uninterrupted. With 6 kids running around, sometimes that can be hard to find!
They talk about this being a “cure” which sounds great. Prenatal closure corrects hydrocephalus, stem cells promotes nerve healing, providing better mobility.
But I was left asking the question, what about tethering?
Nate Payne had prenatal surgery, which corrected/stabilized his hydrocephalus and he is very mobile (even without stem cells), but he still required a detethering, which then led to an ETV and a shunt (if I remember correctly).
I wonder what this “scaffold” is and whether, perhaps, it prevents tethering. Wouldn’t that be amazing in and of itself!
The only thing that comes to mind for me would be dehydration or diet high in sugar or high in protein that’s all I can think of
I would say yes, that is non-symptomatic. As long as there is no fever, lethargy, etc. I might up the d-mannose? Maybe, if she isn’t drinking more, offer her foods with a high water content. Melons come to mind, particularly.
We went through a bit of a phase with that a couple months ago and it disappeared as quick as it came, after lingering with us a few weeks. That’s purely anecdotal, but maybe it helps.
I don’t disagree with you. But…
I always have mixed feelings about this sort of thing. It always carries with it a trace of implication that our kids are universally “other/broken”, and I dislike that. They have medical needs, yes, as do we all. And I certainly am appreciative of anything that aids them in living a full life. I think this might be amazing. But I also think there is such a tremendous, dramatic lack of appreciation for how perfect they are, just as they are.
We live in an age so driven by the physical… How we look. How healthy we are. How free of disease we are and can guarantee ourselves to be. There’s this unspoken suggestion that some sort of “get fit” effort is a near moral obligation we owe others. I reject that utterly. And, I think that this is, in its own way, kin to that.
The problem is this idea that all things can be, or ought to be, “fixed”. Which leads to a very deficient ability by society at large, and often very acutely in certain medical and other circles, to actually treat people as people and have grace and compassion for what actually is.
I’m not sure that all makes sense. It sounds a little rambly, but I’m running on 3 hours of sleep, so I beg your pardon for that.
Ladies! I am so sleepy, so forgive whatever oddities are here.
Dana, you’ve seen me on your thread. I have lots of reasons, which I have enumerated over there, but bottom line is that I’m tired with calibrating and re-calibrating our solution. I do think that the enema is the best answer for keeping the bowel healthy over time and, in our case, for helping her urinary sphincter issue too. I also know, absolutely know, that she will never be able to go on her own, so I’d rather start now when she doesn’t really know any different than wait until I have to convince her this is what we want to do.
I do have my eye on the peristeen. I’ve seen several videos, and it doesn’t seem too very fiddly to me. One switch between air and water, and two tubes instead of one. I have read about baloons bursting and that is a concern we will have to work on when we get there. But! My primary attraction to it is that it is something she will be able to do on her own as she gets older. For the sake of her dignity I don’t want her to have to figure out how to do a gravity based enema on her own, or forever have someone else help her to go. I know this is going to be life long for her. I want it to be something she can master on her own.
Camilla! Thank you so much for the nasal bulb syringe idea. So obvious. So simple. And I never would have come up with it!! We are experimenting with the enema bottle now and that is the primary problem – no “stopper”.
I will try that tonight and let you ladies know how it goes.
Good for you! I think you’ll be glad you made the leap 🙂
Why do you think she won’t be able to do the cone by herself? I’m thinking about having lewis start doing it independently within the next couple years and I don’t see any reason he won’t be able to. He’s been cathing himself since he was 3 (once I lift him onto the potty) so I’m all about independence! 🙂
It seems a lot more challenging physically. I suspect you are right and she could do it, but getting on the bathroom floor naked (at least waist down), and transferring etc. seems like a lot compared to simply inserting the catheter while sitting, still clothed on a toilet. I’ve read several accounts of spinal injury patients (don’t remember if it included adults with SB) who preferred the peristeen for similar reasons.
I guess we will find out. Truthfully, it will be several years before I’d have her do it on her own either way (she’s not 2 yet) so any number of things could change before then in terms of options for her later.
In the meantime, I’ll be excited to see how we progress just where we are.
Thanks for all the encouragement!
I guess I look at it a little differently.
God originally made us in his image and perfect, but because of the fall and the effects of sin, things get broken. My thyroid, for example – das kaput! So my goal for Pooka is to restore function to its original unfallen state as much as possible, just like I would desire that for my own thyroid.
But I do agree that our culture is OBSESSED with looks and are always trying to “fix” things that aren’t broken at all.
The Bible explains it this way – people now worship and serve the creature rather than their Creator.
I understand your perspective. I would agree with you on the why of it.
But I also think that caring for the woundedness of others is caring for Christ whose wounds were what made the difference, not a thing to be avoided or abandoned in favor of something more “normal”. That it is a gift to be given any child, and to serve whatever their needs may be. Too often that idea is unobjectionable only when the needs are things we find acceptable. When they move outside of that category we suddenly are desperate for a cure.
So, I cringe when I see mom’s complaining about “Why don’t they just get with the stem cells already”. I do see and hear with many of these kinds of stories a real rejection of the fullness and beauty of what is. And what is, is a wonderful person also made in His image, also full of potential for complete union with Him and for amazing love in this life. So often those things are dismissed or not even noticed in these conversations, and the flaws of the body are seen as primary. To me, that is disordered.
This *is* exciting. I’m also not suggesting you fall into the comments above. But I always crave a little balance when I read these. This article seems a little over focused on all the potential physical negatives (which are not automatic) without any focus on the actual people, or even the risks involved. That’s really all.
Ah, I see where you’re coming from now. I’ve seen this negativity a lot, full of regret and/or wistful thinking about what could have or even could be. I don’t have any of those feelings, so I missed what you were saying. I get you now.
So! I just wanted to pop on and say we tried this tonight. A Fleets bottle with the bulb syringe and just warm tap water. It was pretty dang easy and it worked fantastically.
I upped her magnesium a little just to help with anything that might be “old” in her system, and I will probably change to saline. But even without all that it was great and I’m excited. I’m happy to stick with a mini version for now and happy to be on our way to not having to mix potions for her!!
Trying to get my head around this. What would be the pros/cons of using the syringe vs. Fleet bottle (with the nasal bulb)? Or is it 6 for one, half dozen for the other?
So glad it worked for you!!
Glad it worked! Fyi we do the cone entirely on the potty, no transferring. I don’t know anyone that transfers… Sounds messy!
We transfer Meredith. We infuse the solution while she’s bending over a pillow on the floor, and then lift her up onto the potty and deflate the foley and remove.
Ok I am getting nervous yest she pooped three time soft but round pieces. I really don’t want to give her miralax and just up the mag and molasses one yest and one day before and started fish oil. Maybe I should give her an EnemA just to get her cleaned out good so we can start fresh with natural stuff? Any thoughts
So which is best doterra living young Rocky Mountain many different manufacturers out there.
I’m not that much of a purist. And I’m not super keen on the MLM aspect of some. I use what I can get easily and have never found one to be notably superior to another.
If by syringe you mean a suppository, the fleets bottle provides more liquid and more pressure so it flushed further up.
If you mean why the fleets bottle and not the cone… Well the cone would do essentially the same thing, but potentially with even more fluid and more pressure (depending on how high you hang the bag). It could be a little too much. And, as with all things, if this lesser step will do then I’m happy to stop here for now. As she gets physically bigger we can increase fluid to match her weight and pressure to match internal growth by going to the cone.
And then, at some point, hopefully, to the Peristeen.
Is that what you are asking?
If those pieces were soft, I would continue as you are for a few more days and see what happens. It can take two or three days for the increases you’ve made to impact her.
By syringe, I meant the item in the second picture that Camilla sent. It looked like a large oral syringe. But if I understood correctly, you used a fleet bottle instead.
I tried to do some enema research last night, but didn’t learn much except for what the various kinds look like. I have mostly ignored all but the most general information about enemas up until this point (on Baby Center that is). That sounded bad. I read the posts, but I haven’t asked any questions in my mind about them, so I have only a very basic knowledge.
And after researching them each by name and then moving on to “bowel management program” both on Google & Baby Center, I am still left with a lot of questions. So I think I will post separately.
I agree with MrsK. I have always used whatever brand was available at the health food store, mostly NOW brand. And I have seen powerful results. I even mixed up my own batch of Thieve’s Oil using NOW brand oils to get rid of a mold problem after our carpet got flooded. I bought some books and watched some videos and the evidence was very compelling. Thieve’s Oil kills mold spores. And it worked. That’s a pretty big task to ask from a supposedly inferior brand, but it met the challenge.
I would say to check to make sure the oil is 100%. My hot oils from NOW are diluted in olive oil. But I would prefer to be given the pure oil and do my own dilution.
Regarding the brands you mentioned. I haven’t done any research on Rocky Mountain, but I think the other two are very similar. I’ve heard arguments why one is better than the other, but it all sounded like marketing to me.
I do think those three therapeutic brands are higher quality, maybe sourced better, extracted with a better process, probably more concentrated and effective. So if I was wanting to use it for something critical, I would probably buy a therapeutic brand. I have only done that once, with my helichrysum for my son’s burn on his face and to use as a test on Pooka’s legs.
So there’s my two cents. I do think the therapeutic brands are higher quality, but I think the lower quality works just fine for common household tasks.
What did you increase & by how much?
Fish oil 1/2 tsp a day started for first time yest
Fruit ease 1 tsp a day
I increased molasses from 1 tsp to 2 tsp but she wouldn’t take it all so say to 1 1/2 tsp a day
I increase mag that naturally calm from 1/8 tsp to 1/4 tsp
The bottle says mix with 2 oz water but I mixed with 2 oz water and organic pear juice maybe I shouldn’t have done that?
Probiotic for baby
She gets one 8 oz bottle half water and half organic pear juice a day
Breakfast she eats oatmeal on weekend eggs I bought organic blueberry pancakes but haven’t given them yet
Lunch baby food – sweet potatoes or apples or apple and blueberry and peaches and rasins
Snack raisins few Cheerios few organic corn puffs
If she get yogurt it’s goat yogurt and I bought some coconut yogurt but haven’t tried that
Dinner- organic squash or sweet potatoes fries or green beans or English peas meat- chicken or chicken nuggets no antibiotics used
She loves to eat
I gave her Mac and cheese a few times and realized real quick not to give her that again
I am new to eating healthly but I am trying thanks for all the help
Oh I forgot to mention she turned one and we r almost off baby formula and she gets about 3 oz of hemp milk in am and in pm but hemp milk says easy digestible proteins ?
I have never used hemp milk. I’ve probably used every other milk on the market – soy, rice, almond, cashew, mixed nut. But I’ve never been drawn to the hemp. Did you buy it just because it said “easily digestible proteins” or because someone recommended it?
What state are you in? I’ll look up the raw goat milk laws for you.
I just read it wa easy to digest an it’s closest in protein and nutrients to reg milk. But maybe I should change back to goat milk or Try coconut milk? I increased mag to 1/4 tsp twice a day I think it helped little but she screams out in pain some like her stomach is cramping. ? Maybe I should stay at 1/4 tsp per day she is one ?
We experienced some stomach pain in conjunction with an increase in magnesium. Since, for us, it was all that had changed I felt confident it was the magnesium. If I were in your place I’d stick to the lower dose, or only increase it by 1/2 (to 3/8ths a tsp).
Ok thank u I think ill go back to 1/4 tsp per day if mag for few days and see how that goes thank u
Oooh, poor girl. It’s so hard when they can’t tell us what’s wrong. Do you think it’s gas or straining for constipation?
I give Pooka this ginger tea every time she appears to have stomach pain and it has settled her down every time.
It dissolves in cold water and I give it to her in her bottle. She drinks very little, but it seems to really help and pretty quickly too, but I can’t know for sure.
Interesting, I didn’t know that about hemp milk. I don’t think coconut milk would be better then, but I do think goat milk would be better, if she tolerates it. It is definitely both higher in protein and a more complete protein.
How have her bowels been the past few days?
Were you able to try the enema?
I’m not expert but I’ll give it a try. 🙂
1) As far as I know, I’ve only heard my local nurse use the baby cone. She is a poop expert, seriously! Fleet is only a temp solution and the elements in it are bad to use over a long period of time. I believe the balloon helps keep in the liquid better than the cone but not sure what benefits the cone has over the balloon other than I would *think* the cone is less invasive and there is less risk for any stretching of the sphincter.
2) Most people (including us) still need to use supplements etc. We use senna to bring stool down the colon and the enema to flush it out. Less supplementation is needed with the peristeen since it flushes up higher.
3) Probably not. Impactions are typically higher up in the colon. I’m sure it would help but not take the place of the other two interventions you mentioned.
I just wanted to add that if you think she is constipated, I would not feel bad intervening (miralax, senna, suppositories, enemas–not all but maybe one of those) and then you can work to get back on track with the natural stuff. If she is already constipated, it may be hard make a major impact by just tweaking your regiment. She may need to be cleared out first.
I just called pharm to get baby enema I am going to give that I think that’s a great idea get her cleaned out and get back on track thank u. Does anyone have any experience with hemp milk ?
Oh. I see. I’ll reply I n your other post when I can sit in front of the computer, rather than type on the phone.
In order for a cone to work well you kind of need the poop to be on the slow side because you want it to stay there until you flush it out. Then there’s no risk of an accident. So I wouldn’t recommend supplementation with an enema.
Cone you have to hold in (or sit in a way that it stays in) while the balloon, in theory, stays in itself. I don’t know how realistic that is for kids with loose sphincters though. I think it’s preference and what works best for each kid. Once something works, why mess with it?!
Depends where the blockage is in an emergency. With a regular bowel program I don’t think theres much risk for that happening but most likely shed end up on something oral.
Ok. Here’s my contribution. Disclaimer: This is more about what I have read than what I have tried. Still, I hope it will be helpful.
Here is a really basic diagram of your colon.
The basic premise is that the further you can flush the better. Most of the time an enema can fully flush the descending colon, particularly on a regular program. Doing so allows everything to continue moving, and in the case of our kids to hopefully achieve some continence by flushing out enough that it will take a full 24 hours (or more) before everything has moved down again enough to potentially cause an accident.
To answer your second question, I would think that if the individual is able to move stool within reach of the enema’s action, without supplementation, then that would be ideal. Else you might have a situation where the stool is too soft and you have accidents, as Lauren suggests, However, I know we also have mom’s on here whose child has impactions further back into the transverse or even ascending colon. In those cases then no, the enema alone wouldn’t help. And yes, I would think you would need a supplement to get the stool within reach of an enema. I think you could still achieve continence this way, but it would take a little work to figure out how much supplement was enough without being too much. I don’t know if there is a “most people” answer to this one since everyone has different anatomy and is differently affected. So far at least, Z falls into the former category.
Kinds of enemas –
The most basic is the Fleets variety. They do make “enema bulbs” which is the same idea. And the Fleets brand comes filled with a solution that includes phosphates. Phostphates are not really recommend for children, and even with adults should not be used regularly. These, a bulb or a bottle, are just a small, squeezable container with a nozzle and a valve that prevents the container from drawing back liquid into itself. (So, it only can squeeze out, not suck in.) The squeezing action pushes the water in and provides what “force” there is.
You fill the container with whatever solution you are using, insert it and squeeze. The best results are aided by placing the child on their left side so as to most effectively move the fluid through the colon. Once the solution is emptied into the colon, you wait a few minutes to give it time to work its way as far as possible, then sit on the toilet and allow time for it, and all the stool involved to wash back out.
With our kids, certainly with Z, the issue with this style is that the nozzle is slender and without tone to keep the fluids in, they just flow back out before they can be effective. Part of the reason the cone enema is popular is that the cone counteracts that by its shape.
A cone enema uses a fluids bag, tubing, the cone itself and gravity.
The process is essentially the same, but rather than relying on a good squeeze for momentum, it uses gravity. So the bag is generally hung 3-5 feet above the individual to make the most of the effects of gravity and can be raised or lowered to increase or decrease that effect as needed. As Lauren mentioned, you could do this while seated on the toilet, rather than lying down (at least with an older child and greater fluid volumes than us), because the force is greater and the lying down doesn’t have as much impact. The recommended wait time before removing the cone, at least that I have seen, is 10 minutes.
So why did I chose the Fleets bottle? Well, I’m only using about 2 ounces of water, so the cone seems a little overkill just yet. We are using the bottle *instead of* a syringe (as shown on the other thread) for two reasons. Primarily, I had the bottle already. 😉 Also, 2 ounces in a syringe is a heavy syringe and I have a wiggly baby. I’m using an (adult size) bottle because I can get a good firm hold on it even when she wiggles. The bulb syringe just becomes my cone/stopper and works really well. I’ve uploaded a photo. There are two bulb syringe pieces in that photo. They both work, and I prefer the smaller- easier to manage – more tapered and suitable for her size.
Currently I am using two ounces of warm tap water. That is all. I have her lie down on her left and I leave the solution in about 2 minutes and then put her on the toilet for about 20 minutes. That is all less than what I read elsewhere as being “standard” but she is only 16 months old and much younger than the intended patient group that the literature assumes. This is sort of a mini/starter enema that she will absolutely outgrow.
At the point at which she is too big for this we can move to a proper cone program or a balloon catheter variation. You could do this with a foley, still using gravity and the other general guidelines or, you can try the Peristeen.
The Peristeen does not rely on gravity, but on a squeeze force like the bottle/bulb. It’s designed to be set on a counter and need no “rigging” (where to hang the bag). It also does not require that you hold the fluids in because you are pressing the water up, not waiting on gravity. I’ve also read that those who have had success with it are able to flush up into the transverse colon, which would (theoretically) give you a longer “clean” period.
The Peristeen is a catheter that is inserted, with a balloon attached. You basically insert the catheter (a one time use supply that would tossed and replaced with each use), turn a switch to an “air” setting and pump air into the balloon. Inflating the balloon is what will hold the catheter in place. You then switch the setting to “water” and using the same hand pump (an inline bulb) pump water through the catheter into the colon. Once you’ve infused the amount of water/solution required, you switch back to “air” which deflates the balloon. You remove the catheter and allow the fluids to flush out as you would at the end of the other enemas.
Problems with the cone system, to my way of thinking, are just the need to have some way to hang the bag and the additional time while waiting on the fluids to work into the colon. I also don’t think, all things being equal, that it will flush as far as the Peristeen and the most effective use of gravity requires lying down (not absolutely necessary but the most recommended for highest performance) and then transferring to the toilet. None of these are a big deal. I would put these into the category of preference, knowing that the preference can be driven by what works best with an individual’s anatomy etc.
Negatives with the Peristeen would be the initial cost, a need to replace a catheter each time (cost) and the possibility of the balloon either not sealing or bursting. In an older person, I would think these things would be a bit more nuanced (perhaps a greater awareness of how well the balloon is working ). In a child, the rule is that if it isn’t leaking, its working. I have read complaints from adult users that balloons have burst while inserted. That can’t be pleasant and could be terrifying to a young child. It could be user error. It could be an occasional quality control issue. In either case I wouldn’t use it until I could really communicate more fully with Z. But again, I would think this is largely preference based with the same caveat as above.
I hope we are able to transition to the Peristeen. If it were me that needed this daily, I would rather have that. I like the idea of being able to more fully flush, my visual driven self would rather not have to set up a permanent place to hang up a bag (more medical and I’m of the bathrooms-should-be-like-spas mentality – my own hang up, I know.) and honestly, I’ve read a lot of testimonials from adults who prefer this system to other enema systems. That being said, if it won’t work for us then it won’t. The cone system is hugely successful for many, many people. I’m not discouraged either way.
I’ve used links because I couldn’t figure out how to get multiple photos in the one post. Admin, feel free to edit to place them in directly.
Also, here are links to a series of videos CHoP did, that I thought were very basic and helpful.
Hope that helps!!!
I take down a picture from the wall and hang the bag from the hook. When we’re done, I put the picture back up and the bathroom is a spa again 🙂
(Fleets bottle w/bulb syringe)
Thank you all very much. So so helpful.
One final question. So what is the standard protocol for the great majority? The SB clinic/GI/Pediatric Urology Protocol? Miralax until 2 or 3, then cone enemas after that?
And does that protocol differ from the protocol recommended at the 2, or is it 3 now, Bowel Management Programs?
I am not certain that there is a universal standard. Certainly many doctors do recommend the miralax, but if you recall, in one of her comments elsewhere, Dana mentioned that the clinic in Cincinnati told her that they specifically do not recommend it. I know another mother stated that it was her physician who recommended milk and molasses as an enema solution. I think from Dr to Dr there could be rather a lot of variables.
As for the bowel programs themselves, I believe the two in Ohio would be identical since they are run and set up by the same group of folks. I suspect that other clinics elsewhere in the country are largely following their protocol. But, I have not been to any of those clinics nor spoken to them. So, I couldn’t say for sure either what their standard is or how that would vary from an individual doctor’s.
there is also a balloon gravity enema, which is what cincy prescribes. The “balloon” portion is the foley catheter, and the gravity portion is a feeding bag with a valve to regulate the flow of solution. You don’t really need a “permanent” place to hang it, as a hanger from the shower rod works fine. I know some places (like Camp Independence, the SB-specific summer camp) has communal bathrooms with MACE hooks for whatever contraptions a person needs.
They way it stays in is by blowing up the balloon on the foley using a syringe. Cincy initially recommended 20-30 ccs of air, but Meredith needs from 40 to 60 ccs due to no anal tone. anectodal evidence indicates this is a lot! Then you infuse in the solution, just like for the cone.
The reason why Colleen and others recommend the cone over the balloon is that it is something that can be purchase without a script from amazon. foleys and feeding bags cannot. Many people cannot or do not want to go to bowel management program and so that is how they can perform a gravity enema without a medical professionals input.
The CHoP videos cover this too. I would think that, just like with the Peristeen, this also has the advantage of not having to be held in place by hand.
Actually, to keep from leaking, the balloon needs to be tugged on a bit (but not hard enough to pull it out). We have Meredith lay over a wedge pillow for the infusion + holding time (we infuse it over about five minutes. this is regulated by the valve on the feeding bag) and then hold it in for 10 minutes, all while we’re tugging on it. then transfer her to the toilet, deflate the balloon, remove and then sit for 45 minutes.
I believe this is an advantage over the cone, which has to be held in by hand. It seems a lot of people place the child on the pot and hold it in that way, which would be very awkward to do for 10 minutes. It seems a lot of them get a special commode so there is space between the child and the regular toilet seat for their hand.
This method is working for us know, but I’m sure you can see why we are hoping for the peristeen eventually. Sometime (soon!) she’s not going to want to be lying on the bathroom floor with her butt in the air while I, or especially her FATHER, is administering the enema! For now it’s fine, but … And if she decides that a MACE is actually her preference, I will support that too (I think.)
All of the people I know who do the cone (us included) just use a regular potty seat and the child leans forward. No transferring and no specialized potty seat. Have you tried doing the whole process on the potty? I have a friend who just sits the child on the side of the potty seat so that the seat holds the cone in place and no one has to hold it in. Just in case you’re looking for other options 🙂
Absolutely! Nice to “meet” you too. lol. Mine is a short I.
My must have for sb related things is a roller ball with 30 drops oregano and 15 drops of thieves filled the rest of the way with carrier oil. L caths and when we notice his pee is cloudy or he complains that it hurts we put it on his bladder area and on the soles of his feet every time he caths. It may take up to a week but it gets rid of UTIs. Its amazing!
Thanks for the tip. I’m going to try this. The ammonia smell just wont quit!
And as far as brands go, I used health food store brands for years but switched to young living about a year ago. I didn’t think I would but I can tell a difference in effectiveness. That being said, I HATE the MLM aspect and I hate that they’re so expensive so if cost is an issue, if just go with what you can afford.
I’m curious how you were able to tell the difference and with which oils? I have been considering upgrading to therapeutic grade as I run out of each oil.
Please, please don’t feel guilty about using Miralax!! It is there for a reason, it is effective, and is far better than having impactions/constipation that can damage the colon, bladder, etc. I am glad you are open and willing to try natural methods and I am confident that we can help you get Santiago on a natural remedy.
Please correct me if I am wrong, but it sounds a bit like you are using Miralax to relieve constipation then stopping it all together, then he becomes constipated again? Now he is on a “maintenance” dose? My first recommendation is to not stop the Miralax all together until we have some of the natural remedies in place and you know you can give them (ie he will take them).
When I weaned Caroline off Miralax (she was on it for 6 months when she was 4 to 10 months old), I slowly weaned over several weeks (maybe a month?). What worked for me might not work for you, but I will give you my protocol.
First – start with what you are doing now as long as Santiago has good poops (my goal is formed but soft and squish BMs, kind of soft Play Doh or cookie dough consistency to peanut butter consistency). Keep in mind that their stools will change a bit with diet, just like ours do 🙂 so it will always be a bit of a work in progress.
Second – have a “goal” dose of whatever supplements you choose. Keep in mind that this is just a starting goal, which is largely a guess since all of our babies are affected differently. If you want to use what works for me since our babies are similar in age/size, I think that is fine (Caroline is 19 months, 24 pounds). Please also keep in mind that Caroline is still on breastmilk, so that probably helps her poops. Currently, Caroline takes:
1 tablespoon powdered D-mannose
1/4 teaspoon magnesium citrate
1 teaspoon powdered probiotic
2 tablets Theracran crushed up
1 dropper full Cornsilk
2.5 mL (1/2 teaspoon) blackstrap molasses
10 mL (2 teaspoons) orange flavored emulsfied fish oil
about 1/2 teaspoon Fruit Eze
I mix all this up (powdered products first with some water then add the liquid products and Fruit Eze, which with enough mixing using a fork is able to be given by syringe) and give it all to her by syringe once daily. Sounds disgusting, but it actually is not horrible. She knows it is medicine and knows she has to take it. We walk around the house looking at different things and if she wants to go somewhere else (like outside or to pet the cat or whatever) then she has to take a syringe full to get the “reward”. Start slow and don’t force it, but reward him for taking it. Give throughout the day in little increments if needed. I always brush Caroline’s teeth shortly after she takes her meds due to the sugar. Also, use a syringe that does NOT have a rubber stopper. The ones that come with baby Tyelnol or other OTC fever reducers do not have a rubber stopper. This whole routine (mixing, giving) takes about 10 minutes. Well, unless my 4 year old helps, then it takes forever 🙂
Now – how to transition:
Week 1 – give 75% of his current dose of Miralax and give about 25% of the “goal” natural remedy mixture (you only need to mix up about 1/4 of the mixture so you don’t waste it).
Week 2 – give 50% Miralax and 50% natural remedy
Week 3 – give 25% Miralax and 75% natural remedy
Week 4 – give all natural remedy
If at any time, Santiago is having constipation, then go back to what was working and try a slower weaning process such as not making changes for 2 weeks, or doing 90% Miralax/10% natural…you get the picture. It will take time for you to see the changes and figure out what Santiago needs.
Also, if you see poop at his anus when you change him, then I would give a glycerin suppository. The cheapest way is to get a big bottle of glycerin (Amazon) and refill the little bulb syringes that come with the box that has a penguin on it by Fleet. This lubes up the poop and makes it slide right on out. I even palpate to see if Caroline has poop that is ready to come out (she has some anal tone so I can’t always see inside). You can palpate by gently pressing your finger just under his anus when he is laying on his back (kind of between his anus and his tail bone or back scar if that makes sense).
How do you keep a wiggly toddler calm during all of this? Sometimes that is tricky, but Caroline, right now, LOVES those plastic easter eggs filled with “new” toys. She gets a couple of them at each diaper change and is thirlled to find the surprise! The new “toy” is usually a sticker, a crumpled up piece of paper, some random small-ish toy that I can find around the house to put in the egg, a blueberry or small cracker, etc.
I hope this helps. Please don’t hesitate to ask questions and I also really look forward to hearing what others say as I am always looking to change my protocol to something that might be even better.
Thanks Tracy, I do always remember you since our kids are so close in age. I even followed the exercises that you provide me for his left foot. Hope that Caroline is doing amazing
back to Santiago: thanks for the detail explanation, i will for sure try to follow your recommendation. This has been a nightmare for me. Yesterday. Santiago didn’t poop at all and I didn’t change anything, so this morning I had to double the dose for Miralax to one teaspoon
I am giving him miralax to clean him out, should I be using more? I do stop when he starts getting very loose and keep with the natural stuff but he goes back again, so I shouldn’t stopped eh?…wow…I know that I am giving him low dose since I don’t want explosions of poop but I just don’t know if I am doing things right….
I had a white board that I keep all what I am doing, and I did one side with my goal, and wrote down your routine to see if I can follow up. There is a problem, since santiago has been so much in antibiotics, he completely hates the syringe, he even cries when he sees it even when I am not giving medicine to him but his 5 year old sister. so how can I stop him from being afraid of it?. I do also need to divide in two doses since I work and I am mostly by myself since my husband travels lots, So I need a dose in the morning and afternoon. is your mixture lots? how many syringes do you give her daily? and my last question for now, what is theracran and corn silk?
Thank you so so much for taking the time and helping me out
I would only make changes to his Miralax every 3 days, minimum. Miralax can take up to 3 days for full effect, so I think by starting and stopping it so abruptly you go between poop explosions and constipation without really knowing what is working or not. So, if 1/2 teaspoon twice daily is working for him, then reduce to 1/2 teaspoon in the morning and 1/4 teaspoon in the evening for 3-7 days until you know he is still pooping well. If that is working, then reduce to 1/4 teaspoon twice daily for another 3-7 days…etc until you have very gradually weaned him off of it. Same goes for having to increase the dose – try to rely on the glycerin suppositories first, but if that is not helpful, then I think a double dose of Miralax to “clean him out” is reasonable. The weaning process can likely only happen if/when you can get the other supplements in. If that proves to be more challenging, then you will need to depend on Miralax a while longer. That is ok!! We will get you there, it may just take some time (months).
Syringe aversion can be tricky. I hate having to force anything, so I would not recommend doing it, but it is up to you. If it were me, I would get 5-10 syringes (any type is fine). I would have them out for him to play with, but not make a big deal about it. Just be playing…”Look Santiago, let’s play with this puzzle and these leggos and these stickers and, oh look, syringes, how fun!!”. Once he will pick them up and play with them or ignore them all together without throwing a fit, then maybe fill them with water and see if he will drink a sip? Or maybe just his milk/formula or something really special like juice/chocolate milk? Once that is going well, then try to sneak in a tiny bit of the natural mix or even just one thing? Just some ideas.
Depending on how much water I add to thin out the mixture and make it easier to syringe feed, it usually comes to about 5 syringe fulls (each 5 mL).
Theracran – cranberry supplement, great for bladder health, cuts down on UTIs
Cornsilk – also a bladder supplement. TSpar knows more about this, I think.
Boy this taste thing really makes it tricky, doesn’t it. Add a fear of the syringe and things get even trickier. I’m so sorry about this.
I think Tracy’s advice is great. You need to get Santi to a stable place before trying to make adjustments.
Please keep us posted. We are here to help.
Oh and cornsilk is known to promote bladder health. Our ND has her on it. I don’t know that much more about it. Our ND mixes it up with some other herbs, like centella. But I don’t consider it crucial, like I do the d-mannose.
Thank you Tracy!!! I am in bed with the achey shakey flu.
What she said for sure!
I logged on to suggest that because it sounds like Santiago is prone to refusing foods, perhaps you might want to try the oral syringe method. You would explain to him that this is medicine and all the important things that go with that. Explain that it is non-negotiable and perhaps offer a reward when he cooperates. Make it quick and immediately follow it with his reward (something he loves).
Going to crawl back under the covers for more aches & shakes now!
hope you feel better soon, you are such a big support…now my problem is to make him like the syringe. He is not vocal yet, no even few words. he talks a lot in his own language but we cant express verbally what he likes or dislikes, but screams so loud and have temper tantrums when he doesnt like something…so I need to approach with something that he would like or otherwise I will have to force him:(
So glad to see you here!! And I totally agree, you have nothing to feel guilty about. Nothing.
Tracy’s advice is perfect. I have only one other comment about the products you are using, and that is that FruitEze is fiber. So too much of a dose will make things worse if he isn’t getting enough water in his colon (which is what Miralax, molasses and magnesium all do). Which is only to say, I wouldn’t increase that dose if he is showing signs of being constipated. I would keep it level and increase one of the other options.
I think too that the comments about making it proper medicine and giving it to him via a syringe is good advice. And I really agree that using a suppository is a great idea to help keep things moving along.
Don’t worry about enemas right now. Ultimately I think you will find they are easier, but he’s much younger than the average age for starting that. Don’t give yourself something else to worry about right now.
Tspar- Feel better!!
thanks for your comment, I have to make my own liquid suppositories since here in Canada they dont sell it. I bough glycerin in the pharmacy, I just dont know how much should i put in a syringe, do you have any suggestion?
thanks so much
4mls is the amount that is in the prepackaged suppositories.
I have been known to occasionally bribe Caroline with a miniature chocolate chip for taking her medicine 🙂 She loves chocolate, unfortunately, like her mama. She rarely needs it as looking for deer and petting the cat is usually incentive enough.
Hope the flu passes quickly TSpar!
What a great thread for future reference purposes. Thank you ladies so much.
Now if I could just get that lazy admin to upload those pictures!!!
I’m definitely watching this one. I’m happy with our mini-enema solution for Z right now, but this could be useful for everyone, at least sometimes.
I can’t wait to see how it goes over a little more time!
Hey look! That lazy admin got it together! 😉 Actually, I would have done it myself, but I didn’t get an option to use HTML from a reply. ???
Just wanted to add that last night I made a couple of changes. I switched to saline (1 1/2 tsp salt per liter per Cincy’s documentation) and added a suppository’s worth of glycerin. She had still had a little poop between enemas the previous days. Not a big deal since we are still in diapers but I wanted to see if I could do things a bit better. It did seem to eliminate that, at least so far.
So, just for reference, the general protocol I’ve read (for older kids) is 10ml of saline per pound. Z is 26 lbs which would be 260mls/8.7 ounces of saline. I only used about 4 ounces yesterday. I had been using 2.
That also taught me another handy benefit of the bulb syringe. I started with two ounces last night and was able to remove the Fleets bottle, holding the syringe in place and blocking the small opening, refill the bottle and add the additional water after the first ounces had been infused. That wouldn’t be universally necessary, but it was helpful to me last night.
Hope this helps someone else too!
Watching hopefully too!
I can’t wait to hear I feel the same way about mag I would love to start eve on this keep us posted
I am frustrated. Now eve won’t take fruit ease and only 1 tsp of molasses a day mixed in oatmeal When she was taking 2 tsp of molasses and fruit ease and probiotic and fish oil and mag her poop was soft but in pieces or balls or smushed in diaper like play doh. So now it’s probably gonna get worse. I am gonna add vit c tonight. Also even though she goes multiple time a day and some decent size pieces formed soft her tummy looks and feel full. I am gonna give her dose of senna tonight to clean her out from top enema helped but I think only the descending colon. I have read about aloe water should i add that I don’t think we r gonna get anymore benefit from current stuff and I can’t up dose cause she won’t take or up mag cause of cramps.
Also found raw cow milk not to far from Augusta ga but not goat milk ?
On a positive note God answers pray eve MRI stable releases for one year just saw neuro at vandy in way home eve is 13 month no shunt no etv.
While we try to go as naturally as possible with bowel routines (my daughter is 4 and we give senna and enemas), in my opinion, keeping her unconstipated is more important for long term health than the possible side effects of miralax or any other medication. So, if you are finding that the natural solutions are not cutting it right now, I would just worry about cleaning her out and then after you are sure she is unconstipated, try to work back in some natural solutions and see if you can at least lower the medications. We have previously given medications for bowels that I wish I didn’t have to give her but we necessary at the time. Sorry it been a struggle to find what works for Eve. I completely understand–bowels can be so frustrating.
Yeah for a good MRI report. That’s amazing that she has been able to stabilize without the need for an ETV or shunt! Yeah!!!
Camilla, how early can you start senna? Can you give us a rundown of the basic protocol? Brands, dosages, warnings, etc.
The thing I love about ABM is we aren’t aiming for results or fixing anything. My goal for L has always been to help him to be comfortable in his body and to use it to be independent. When I compare him to his peers who don’t do ABM, I see huge differences in how he holds himself and how he can move. He isn’t stuck in his body as some kids seem to be. My goal in doing ABM was never to make him walk. He doesn’t walk. He uses wheels outside the house and mainly scoots around inside. He probably could walk with KAFOs and a walker but it would really hold him back compared to how he gets around now, so it’s not something I’ve pushed. I’ve asked him if he wants to try to walk and he’s not interested. If that changes in the future, we can explore walking then.
We actually have a lot of kids with SB around here who do ABM. Not as many as do traditional therapy, but still quite a few. They all seem to slow down and focus on other things around kindergarten, I’ve noticed. Maybe sensory issues or reading/attention issues start showing themselves. Plus there’s sports and just less time in general for therapy. And I feel like that’s where we are now.
I’m really not sure if a 1 year old can start senna or not. That would be a good question to ask on the baby center or a facebook forum with more people. I know we started before 2 yrs but I can’r remember how many months past one year. Most liquid/syrup sennas all have the same potency. The back of the bottle has recommendations for 2 yrs and older. Off the top of my head, I would start somewhere around 1 ml but I know it really varies per child how much is needed.
A side note, our local hospital who generally advocate senna and no miralax still use miralax for “clean outs” and then resume senna. My daughter did do a miralax clean out once. I think they use it for the clean outs because it really helps to soften stool that is stuck up in the colon and then once the impaction is cleared out, they use senna to keep the stool moving along through the colon.
Ok I feel little better I am gonna give her little senna the dose say 1.25 to 2.25 so I am gonna give 1 ml and I think just very little miralax just to soften little and get her cleaned out then maybe I can keep her go in on natural plus like few time week little senna. I just really wanted to do all natural The Bowles are the most frustrating thing with SB thanks so much. Any thoughts on aloe water
Also we r missing a natural stimulant in the mix. She is on molasses an mag to soften and not soft enough so I am gonna add little vit c. On fish oil to lubricate. And it’s working well stool looks greezy. Also on probiotic. So I néed to add cape aloe ? Triphala ? Aloe water ?
Senna is a natural stimulant laxative.
Here is my advice, but I’ll be anxious to see what others think as well.
1) I think you should go the senna route for right now. Dose up on Senna until you feel like you have reached a good place.
2) Then once you are stable on Senna, back off of Miralax slowly, tweaking the senna if necessary. (Assuming you are still using Miralax at that point.)
3) In the meantime I would not change anything else. Maintain your current doses of all other supplements and don’t add anything else to the mix.
4) Once you are stabilized on senna, without Miralax, you can start playing with doses again, perhaps even trying the Triphala product.
I just think you need to find a stable place and I think senna can get you there the fastest.
Regarding aloe water, unfortunately I don’t know anything about it.
Thank u sooo much I was felling so overwhelmed and frustrated I needed a plan thank u. I am gonna do exactly that. I just have the senna 1 ml and I am gonna keep all natural stuff the same. We had already stopped the miralax a week ago just cold turkey that may have been out whole problem I didn’t know to wean it until I read ur post somewhere else on site. Thank u I just wanted to give up
Aw, I’m so glad it encouraged you. This whole bowel thing can be pretty frustrating, for sure!
Thank you so much for that explanation. That makes sense. I love what you said about him being comfortable rather than “stuck” in his own body. I’ve heard very similar descriptions from other ABM moms. That is encouraging. Thanks for sharing!
UPDATE: 24 hours after the first dose in maple syrup, she had two whipped cream cheese texture diapers. That changed to lumpy watery diarrhea today. Not sure what that means yet. Could go either way.
She’s off molasses altogether now.
I’m non-conclusive at this point. More soon.
This might be long but here is my list of uses (i’m not listing the general use stuff, but I look up pretty much any/every ailment and try EOs for them)
Diaper Cream Recipe
½ cup shea butter
¼ cup extra virgin coconut oil
10 drops lavender
8 drops melaluca
UTI Treatment Blend
Frankincense 2 drops
Lemongrass 2 drops
Melaluca 6 drops
5 drops Wild Orange
4 drops DigestZen
3 drops Coriander
3 drops Lemon
2 drops Black Pepper
1 drop Peppermint
4 oz. Fractionated Coconut Oil
Nerve Regeneration Blend (back oil)
• 5 parts – Helichrysum
• 3 parts – Cypress
• 8 parts – Geranium
• 2 parts – Juniper
• 1 part – Peppermint
3-4 drops topically to the area
1-2 drops lime
Put in diffuser
Still going back and forth between lumpy diarrhea & whipped cream cheese. Just when I start to panic that the lumpy diarrhea is a sign of impaction, she has a large quantity with perfect consistency.
She was somewhat low on fiber the past few days, so I have been feeding her sweet potato with every meal since yesterday and things are much improved today.
So nothing conclusive still, but I think logging our progress could prove helpful in the future, especially considering I can barely remember my own name some days. 😉
Welcome Christine! So glad you posted.
I saw that Oxy Powder recommended on a Spina Bifida page as well, but I think it is just magnesium, isn’t it? Yes it’s “ozonated” magnesium oxide.
My first recommendation is to start this whole process from a stable bowel position (things are moving consistently, good quantity, good consistency, etc), and move slowly. This ensures the transition is done safely and makes it much easier to evaluate the changes.
Next I would only try one “active ingredient” at a time. A few of us were able to throw a bunch of stuff together and do fine, but that has proven more difficult for others. Through trial & error I was able to discover that molasses was our key ingredient.
I would add/continue the fish oil/flax oil & probiotics for sure. They are just good for overall health and not key “movers”. So from there I would choose either magnesium or molasses (or fruit-eze). Some other moms have complained of tummy aches from the magnesium. So I would lean toward molasses if you can get Cayden to take it (strong taste). Pooka required a full 1 Tbsp per day (spread throughout the day in her bottles) to keep things moving.
But you want to do it slowly. Tracy weaned down from Miralax and up to her supplements by reducing Miralax by 25% then increasing her other supplements by 25% up to her target dosage goal. She describes this process here:
I would also recommend taking the time to read all the bowel related posts on the first page of the community forum. I just checked and all the recently relevant ones are still on the first page.
Oh, and with Cayden being 2-1/2, have you considered starting an enema routine?
Please keep us posted and ask any and all questions. We’re here to help.
Just wanted to revisit this briefly to say we were at clinic yesterday. No oneven had any concern at all that we were using an enema as a bowel management tool.
For reference, Z is currently 27 lbs, 32ish inches and 17 months.
Probably from Colleen’s FB poop group. There’s been some chit chat there how awesome this forum is. 🙂
We just finished a 3-day ABM Intensive and I wanted to update you on our triphala experiment.
So we have officially stabilized on the Triphala product. Pooka’s stools had been inconsistent over a 24 hour period, so I started splitting her dose in two and giving her half in the morning & the other half before bed. This has made things a lot more consistent. I do still have to monitor her fluid and fiber intake. Her stools are perfect when she has adequate fiber.
But even more interesting, my ABM therapist has a teenage son with CP, who has always struggled with severe constipation. I told her about the triphala and happened to have the bottle in my diaper bag, so I gave her a few capsules. She gave him 1 capsule the first night and he had TWO bowel movements the next day. She did the same thing the second night and he had a cleanout experience this morning. I left there around 1pm and she was excited and planned to give him the same dose again tonight. She said he NEVER has more than 1 bowel movement a day, usually only 1 every couple of days. The nice thing is that he can tell her if he has any discomfort. He never had discomfort of any kind, just the urge to go A LOT! 🙂
So for reference purposes, each pill contains about 3/4 tsp. And I give Pooka 1/8 tsp per day (1/16 tsp morn & eve).
This works out to:
19mg of Magnesium Hydroxide per day (9.5mg morn & eve)
100mg of the 6 herbs combined (50mg morn & eve).
Where my friend’s son is getting 115mg Magnesium & 600mg of herbs before bed.
I’m pretty excited! I give it to her in an oral syringe mixed into 1 tsp maple syrup, which seems to mask the flavor well enough for Pooka. She actually likes it. My friend’s son just swallows the capsule, which makes things really easy.
For reference purposes, 1 tsp maple syrup has about 1/3 the calories & grams of sugar as compared to 1 Tbsp molasses or 4 oz apple juice. I tsp maple syrup has 18 calories and 4.6g of sugar. (The other two have approx. 60 calories & 15g sugar.)
We are both super excited to be giving our children something that actually promotes the strengthening & healing of the bowel!!!
I snuck over to take a peek and it looks like one person in particular is always recommending this forum! 🙂
Hmmmmmm. Well … this is an awesome forum. 🙂
I think so too! 🙂 But how can we draw our FB friends out of Lurkville?!? We gained probably 25 members, but not a peep from them. I SO want to hear their stories and chat with them all.!!! 🙂
I was doing research on essential oils … I was wondering if you were still using the helichrysum and what you have noticed since February.
I ran out in February. I eventually reordered, but never resumed my routine. I do use it on my son’s facial burn scars and it is nothing short of amazing.
But I’m glad you asked because I have been meaning to start rubbing it on her hips. Both of her hips are completely dislocated in the soft tissue and I foresee this causing problems for her in the future. I was told that a child has up until the age of 4 to grow hip sockets (hers never grew because the femer was never in place to stimulate the socket growth). So I was wondering if the helichrysum massage might stimulate her adductors. It sounds far fetched, but it certainly can’t hurt.
Just a quick update on our foray into this arena. We had upped her total fluid amount to roughly 8oz (or the 10mls/pound recommended by Cincinnati). After a few days at the lesser amount we just weren’t getting anything. So basically I was using to Fleets bottles and switching them wasn’t hard, but it was just sort of a pain.
So… We purchased a proper cone kit. Yesterday was the first day with it. It was a lot easier to use than the bottles. I was surprised. It was more fiddly in some ways, but less in others. Interestingly, where Z had always shown she noticed with the other method, she seemed completely oblivious to this. Maybe she’s just getting used to it, but…
We also will clearly need to increase the time she sits after. Still tweaking that. I took her off yesterday after 30 minutes. We had somewhere to go. It was obvious she wasn’t quite finished, but I just slapped on a diaper and kept going. That turned into a seriously messy diaper (no solids but lots of nasty liquid) that leaked and got on clothes, etc. over the hour or so. Obviously I’m not going to have her sit for 90 minutes, I don’t really think it needs to take that long anyway, but she’s still small enough that we can use a diaper and no one with think a thing of it.
All for now.
Overtime, the time C has to sit on the toilet has decreased significantly. Now she sits for 20 minutes but she is mostly done after 15. She uses a squatty potty which I assume would be too large for Z but if you look it up, I’m sure you could figure out something that works similarly. Also, even though I know its very limited, its worth teaching her how to push (growl, cough, etc) and having her reach for toys etc while on toilet. You can also massage her tummy a bit. Anything to try to get it out faster!
Did you add an irritant like glycerine or soap? I bet (if you didn’t) that would help Z get it out faster.
When we were first learning at Cincy, we had to turn the glycerine down because it was cramping Meredith. Now that we’ve been at this a while (one year in July!), we’ve been ramping it back up. This moves the poop much faster. I’m attributing this to her getting used to whatever sensation, as well has her rectum healing over this time. They start with 10 mLs per pound of body weight at Cincy. She was a little over 40 lbs so we started with 40 mLs of glycerine. We left using 15 mLs and now we are up to 25 or 30 mLs.
I might have mentioned this already, but according to Dr. Bischoff, colons are like fingerprints: completely unique to each person. Which is why each kid responds to their own unique formula. Meredith has a “petite” colon, and according to Colleen, Nates is made of steel!
P.S. I would be happy to scan and email the binder Cincy gave us for home reference if anyone wants it. Just email me at klgs24 at frontier dot com. It would be next week sometime.
I actually am using glycerin. We were already using it with the suppositories, so it seemed sensible to use it here. I’m using only about 10 mls though. Might try increasing that.
I’d love a copy of what you have. I’ll email you later this weekend.
It’s funny how we moms are so different. I would mix concoctions like a mad scientist whose life depended on it to avoid a scenario like that.
I don’t know what it is about the enema scenario that I am so opposed to – the time? the mess? the clean-up? IDK?!?
But I know it doesn’t phase you a bit!
Isn’t that funny?
I bet you’ll come around. 🙂
Aw, come on, let the poor old woman enjoy a good dose of denial, will ya?
Just kidding. I know, I know, enemas are in my far & very distant future. 😉
I was freaking about enemas too. It really is scary, and has overtones of sexual abuse (in my head at least). However, Meredith was at the point where she was going to pre-school and having accidents and kids on the bus had started to tease her about it. Apparenlty our kids become used to the smell and they can’t really feel it on their behind, so you would ask her if she was poopy and she’d answer completely innocent “no!” And she’d have a load. It was becoming when anyone at day care or on the bus smelled something stinky they’d tease that “Meredith is poopy!” and it was very distressing to her, and breaking my heart. So I was willing to do ANYTHING to change that. We were even recommended the MACE, but my husband and I wanted to try something else first that wasn’t creating a permanent hole in her body.
Its funny you say that, about sexual abuse. I get it, but I really never thought of it that way. But then, when I was researching bulbs and supplies I came across a lot of fetish sorts of things. Not exactly surprised, but still… Then again, people have made a sexual “thing” out of all manner of otherwise ordinary, non-sexual things.
In any case, I don’t want her to ever think of it as something scary, or icky or what have you. I think that would make it easier for someone to take advantage of her somehow (God forbid!) if she was already feeling some manner of embarrassment or shame about it.
I’m grateful it really doesn’t bother me, because I wouldn’t want to transfer that to her somehow. And actually, today, her big brother helped keep her entertained. We insisted on an age appropriate amount of privacy when we got started, but I answered all his “What’s that?” questions, and let him keep her company while she sat. It was very sweet to see him want to be there with her.
I totally share your feelings about the MACE. More, since we have several years yet before continence is any sort of issue (and we will home school, so probably have longer than most) I am curious to see what else may develop between now and then.
ETA: None of that is to suggest that I think you are wrong for your thoughts about it. If anything, I think I’m the odd man out on this one. It totally freaks my mother out too. Just made me think of all the “extras” I found researching supplies. And then, you know, I can’t shut up. 😉
It is! I really had no intention of starting this soon, though I fully expected to do it. And it really does not bother me, but…
I opted to do this because the supplements weren’t keeping up. Every time I’d get things where I was happy with them, something in her diet would change and we’d be back to starting over. It wasn’t like that in the beginning. Not at all. But she’s been such a good eater from the start and the older she is, the more varied her diet is and the goofier this all became. While I’ve never worried that we keep her colon completely clear (don’t think that is really normal for anyone) she was starting back up every few days. I don’t want that for her either. We’d have one good day, maybe two, then an iffy day and then three days of constipation – and repeat. That’s not ideal either.
This is so direct and simple. I know exactly what is happening. The results are instant and then we all move on. I don’t have to worry about stomach cramps or wonder if things are clearing out. I just plain know.
As for the mess/clean up, its almost nothing. Certainly it isn’t any more effort or mess than the suppositories. So that’s a whatever. It does take more time all at once, though probably not more overall (if you add up all the time to mix, apply, check diapers, wonder if, change supplements or ratios, repeat etc.). That will get better. For one thing, once she is a bit older I can just check in on her and not have to sit with her for the whole time. Even now sometimes her big sis or her dad will take a turn keeping her company.
Camilla, I suspect that once we do this new routine for a week or so things will adjust and she won’t need to sit that long. I love the squatty potty! But she’s so small now that by the time you add in the soft potty seat, her little feet barely reach the top of the bowl. (It is adorable and ridiculous!) We do set her up with things she has to reach for, and play silly, giggly games. I’m sure that helps.
Either way, for now 30 minutes is about her tolerance limit. Since we aren’t doing this for continence just yet, it really doesn’t matter. I’ll let her sit past 30 if she feels like it, but once she gets frustrated we will just put on a diaper and keep going. By the time she’s old enough for there to be a concern about accidents after, I think it will be a non-issue.
Oh Tspar! That is one other reason I am happy about starting now. She will never need to adjust to the idea. I think, if she were a few years older before we started there could be some real unhappiness at first. Plenty of mom’s over on BBC commenting about bribing their kids to get started seems evidence of that. Right now she couldn’t possibly care less. Later it will just be what we have always done.
Its really and truly no big deal.
Good food for thought. I definitely don’t want it to be negative for her in any way, due to her age or my negativity.
But I still hold out hope that she can be bowel continent without it. But if not, we will embrace it and make it her new normal.
P.S. I miss egg nog!
Thanks everyone for your recommendations & recipes. I have heard multiple people say that they could tell a difference with the therapeutic brands. So I think I am going to slowly convert to doTerra as I run out of NOW.
Hey Lauren, if you see this, I would love to hear how you specifically saw a difference once you switched to Young Living.
So, before Triphala she was having 3-4 bowel movements a day–is that right? How is it different now? Is it coming out all day long or still the 3-4 movements?
She is probably having more like 2-3 bowel movements now and they are much more varied in consistency because the supplements aren’t in her every bottle, like they used to be. Now she gets them twice a day and she started eating like a mad woman right around the time we introduced the Triphala. So the goat milk bowel movements are more pasty than the food ones, but they are all still within normal limits, never any pebbles. And they do come less frequently, mostly twice a day, sometimes 3 times. But I watch what she eats and watch what comes out and so I know that her transit time is about 24 hours, which I think is ideal, isn’t it? I think anything less than 24 hours is considered too fast for proper absorption.
By the way, I heard from my ABM friend this morning and she said that her son is “pooping like a champ!! I love that stuff!”
I’m just pondering if Triphala could ever be a substitute for Senna. B/c I see one of the great benefits of Senna being that its supposed to come out all at once (though it doesn’t always happen that way). Generally, you can figure out when the senna is going to “hit” and schedule the enema then. I am interested in trying Triphala but I’m afraid that it wouldn’t be as predictable as senna??
Well I think this product *is* intended to work that way to some extent. It is supposed to be taken before bed with a bowel movement in the morning. And that is how it is working with my friend’s son. I will send her an email right now to find out details on how it has been working since his initial “cleanout”. I’ll report back soon.
How’s it going Christine? Is it working?
OK, she says he takes it before bed and goes once in the morning, but she added that he has been sick and not eating a lot, so that may be contributing to the once a day.
Senna is a tough one to “wean” from. With the once a day thing, you can’t exactly wean off senna and on to something else, without risking the possibility of constipation. Perhaps you could just add a small bedtime dose to the current senna regime and see if consistency and/or frequency changes. Then go from there.
What are your thoughts on it?
Great questions and pictures! I love the no pants! 😉
I was always under the assumption that SMOs were good for both supination and pronation, but did not help stabilize dorsiflexion or plantarflexion. I very well could be wrong and look forward to others’ responses.
Our ortho and PT discussed a hybrid brace for Caroline. We didn’t go with it this time based on their recommendations but are considering it for next time, especially since she shows improvement in her right foot and can almost walk as well with and without a brace on that side. Anyways, the hybrid brace is a SMO that you can easily (and quickly) slip on/off an attachment that turns it into an AFO. So, great for crawling around with only SMO in place, then when she is in the mood for weight bearing and needing more bracing, then just pop on the AFO attachment. Maybe that would work for Pooka? I think the downside is the width of the bracing at the ankle is even bulkier, making shoes even harder to fit.
Speaking of hard to fit shoes, everyone knows to take the insole out of the shoe for orthotics, but I learned the other day to take the tongue out too. Genius! It opened up so much more room and made shoes fit almost perfectly! They are not as awesome as Plae shoes, but a good option for using all the big sis hand me downs 🙂
That hybrid sounds very interesting. I would love to see pictures of that. Was it something custom they make or an off the shelf product from a company like Cascade?
Good thinking on the tongue. I’ll keep that in mind, for sure.
I know a lot of people have been really happy with those type of braces but for us the smo/afo combination was just too bulky. I could only find shoes 4 sizes too large and ultimately just had the braces remade into just afos.
Well I just took a look at the Cascade site (they make our DAFOs) and they have at least a couple SMO options listed to aid with supination. But! How is her ankle strength and control. I think she would need some decent ankle control to really best use the SMOs.
Thank you for those links. Unfortunately I think she has high supination (as opposed to the “mild” they list on the dafo-4).
I found that video very interesting.
And I do like the looks of the kangaroo, even though it is an afo. I like that it has no straps at the top. This would keep it from acting like a lever. The afo could move around her rather than forcing her hips to move with it.
I wonder how I would gauge ankle control. Thoughts?
I’m not sure I know how to gauge it in your situation. And Camilla may well be correct about overpowering them. I do agree about the Kangaroo not levering her hips around.
Maybe ask your orthotist what he thinks about that? Or maybe wait until you modify the old ones and then see what you think? Maybe once you can see how she does in those you can have a better idea what you might still want and how that might be complimented by something different.
If I were you I’d talk to dr. Jordan. The one that Anat recommends. You can send him pictures and videos and he will study them so thoroughly. He is brilliant and believes in not restricting movement. I think you’ll get some good ideas/solutions from him! I can get you his contact info if you don’t have it/can’t find it.
Interesting. Yes, I know him. He is listed on the Physicians & Therapists page. So are you saying he offers just consults? Or would the consult be based on the assumption that we would then travel to New York to have him make her braces?
I borrowed a pair of Jordan’s braces from a friend and brought them into my local orthotist and he made a very similar pair for C. We have been very, very happy with them!
TSpar, when I asked Jordan’s secretary if he would just evaluate her videos and give suggestions, he said no. I think his consults are solely for the purpose of you traveling to NY. I know I told you all this before, but when I emailed him videos (at the time we were planning to go to NY) he did send a very detailed report back but only said what kind of bracing he felt she needed but did not describe that bracing in detail so the report really would not be of any use to give to a local ortho, if that makes sense.
I think the off the shelf smos would be worth trying just to see how she does and she may feel more comfortable moving in them but I think ultimately the reason P would need afos over smos is that she will probably overpower the smos (still turn inward) and they won’t offer her enough support (at least thats how it was for C). Also, as she stands more, I think you will find that the afos keep her upright –less crouching–over smos. Because the afos don’t just help foot position but help compensate for weak calve muscles.
Following. Meredith’s in AFOs right now post surgery because she needs the support. However, I am not convinced that when she is 100% “recovered” that she wont need some sort of orthotic assistance. She was not wearing any previous to surgery and that’s what got us into this mess (I believe). I just discussed SMOs with her PT this morning! She thinks it could go either way right now. She is noticing some supination and though SMOs could help with that. Her feeling was that SMOs were if the child needed help with pronation/supination, but had good dorsiflexion/plantarflexion.
So we spent yesterday morning playing with both sets of her AFOs as well as the compression pants & derotation straps that Camilla so graciously sent to us.
We concluded that her hips might be her biggest obstacle.
The pants seemed to help and the derotation straps have potential too (once we can attach them to her AFOs).
I think we are going to make an appt to see orthotics & PT at Shriner’s to see if we can get her all set up with the straps & the AFOs. It will be interesting to get their feedback. And I can ask them all my questions too.
I’ve been thinking about the ankle thing and it seems to me that pronation & supination are directly related to ankle strength/stability. Isn’t it the ankle that allows the foot to pronate or supinate? If that is the case, she has VERY weak ankles.
I think Camilla may be right that she would overpower SMOs.
I still plan to cut down her old pair of AFOs to SMO size. Then we can play with both AFOs & SMOs.
I will report back after our Shriners visit with all I learn.
Thanks so much for all your insights!
We give aloe vera and senna and have not had any problems. I can’t say for sure about aloe vera but our local SB clinic recommends senna and I know they are very aware of latex precautions so I really don’t think the senna has any latex. I would be inclined to think her skin is sensitive to something in the aloe vera or maybe it was causing her to go more than normal and therefore, irritating her skin.
I had a similar situation and it took the high risk on ultrasound to see the lesion. Then I had an amniocentesis that confirmed it. Pray and God will give u guidance. We had fetal surgery at Vanderbilt they repaired eves spine while I was pregnant with her. Eve is 1 yo crawls and is trying to walk . She doe have neurogenic bladder and bowel. She has no shunt and is a blessing. It will be ok. I would go see a high risk ob.
Hi Jennifer, I saw on FB that Colleen suggested you call a pharmacist. I would be interested to know what you found out?
I wonder if what you read was saying that senna & aloe are latex similar foods? I don’t know much about it. MrsK would be the local expert in this area. But apparently there are certain foods that have some of the same properties as latex and therefore cause reactions for those with a true latex allergy (rather than just precaution).
Wait, if Eve has a latex allergy, you already know this. Sorry if I just wasted your time! You’ll never get those 10 seconds of your life back! 😉
Hello, I saw your post over on Baby Center and don’t know that I have anything helpful to add. Those ladies have a lot more experience with SB than I do, and have given you a lot of great advice.
But I can tell you this, from what you say, your little one appears to have a very mild case. Ventricles still within normal ranges, no club feet, moving all extremities. Obviously none of us can predict the future, but looking at the data, things look great for your little girl.
I think it’s important to remember that just because our little ones are born with their SB condition, rather than developing something later in life, doesn’t necessarily make it any more “special” or “difficult”.
My teenage daughter’s autoimmune condition, which she didn’t develop until just a few years ago, is much more painful and difficult for her to bear than my younger daughter’s Spina Bifida. She has NO IDEA there is anything wrong at all. She is just a very typical, happy, silly, hilarious little cutie pie.
All of this is new to me so defiantly not a waste of my time I truly appreciate all of y’all knowledge thank u. So I called the pharmacist she said a small percentage of people allergic to latex could be allergic to senna and to look at ingredients. So it doesn’t say latex but I just read senna can contain latex cells not really sure what that means either
That is interesting. But if she has been taking senna without a reaction, then I would think that would be fine. It was the aloe vera juice that caused the rash, right?
There is a gal over on Baby Center who has been having a strange experience with aloe vera. It’s kind of a long read and definitely different from what you are going through, but it’s an interesting coincidence. I’ve never used aloe vera juice, so I don’t know what to think about these two instances. It has me leary, for sure.
I also saw you over on Babycenter, but didn’t get there until you’d had many responses. They offered you sound advice there. The trouble with this stage is how nerve wracking it is to wait and see and feel like you have no info. The truth is that every child is differently affected so it just isn’t possible to give you specifics until baby arrives.
Our daughter had an obvious lesion, mild but definite brain changes and we had surgery after birth. Now, at 17 months she walks with a walker and no bracing. Doctors and therapists all expect her to leave the walker behind in the next six months. Cognitively she is at or ahead of her peers and has a huge spoken vocabulary. Her bowel and bladder are affected, but it is nothing she won’t be able to manage independently when she is older. She is funny and spunky and unless you know about her, or see her with that bright yellow walker, you’d never have the slightest idea there was anything going on.
So the first, most important thing is – CONGRATULATIONS!!! A little girl is a fantastic joy! Do you have a name?
And secondly, Tspar is totally right. This will be a challenge, but at least you know now and can begin to prepare. When you add up all the conditions that children are born with, and the things they can be diagnosed with in child hood, and the things that don’t come along until their teens, and all the possible accidents that could happen at any time well… The thing is, being given something “atypical” to deal with is pretty darn typical. SB is well understood, has a large population of support and is something for which there is ever continuing development in the medical community. This will be A-OK,
Congratulations again. Take a deep breath and settle in. It really does get better from here.
Hi! I also saw and just responded (very late) to your post on Baby Center. Also wanted to welcome you to this site, which has been very helpful to me for a smaller community/more personal feel and obviously the natural options.
You asked about our kiddos. Caroline was diagnosed at 20 weeks, had a small L5-S1 lesion that was closed after birth, hydrocephalus managed by ETV/CPC at 7 weeks old. She is now 19 months, walks and sometimes runs with a walker or holding hands, sometimes wears AFOs, knows over 300 sign language signs, has a couple handfuls of words and imitates sounds (what does the cat say…meow), stops traffic with her cuteness, and is by far the happiest person I have ever met. Seriously. Crazy happy.
Diagnosis time is the absolute worst, by far. NICU and surgery are tough. There are still days I hate SB, but those days are few and far between. Most days are just normal days like anyone has with a toddler. Yes, we have to cath (super easy) and yes we sometimes put on braces (they are kind of cute with purple flowers) but overall our days are filled with reading books, snacks, stacking blocks, getting dirty in the garden, singing songs, bath time, giggling, and trying to keep her from chasing the cat too much. Probably the same stuff everybody does.
Your baby will be absolutely perfect. And quite possibly cuter and happier than any baby you have ever met. Congrats!!
So… We had a very strange (and scary) incident this week that landed us in the hospital overnight. It’s still a bit of a mystery, what happened. But!
While we were there, they did a belly Xray and it is evident in the images and spelled out in the notes that we had no constipation or abnormalities. So, yay!! Clearly this is working for us.
We adopted our son with SB from Ukraine as well. You are right, there are so many children there with SB and CP.
Hi Megan! Welcome to the site. Carl James sounds like a pretty amazing kid. My LO is about a year and a half, so it is always great to hear how wonderful the older kids are doing. Thanks for sharing your story and I look forward to more interactions on this awesome site!
Thanks for reading! I loved when my kids were in the toddler stage. It is such a fun time! Enjoy every minute. I feel like I spent a lot of his baby and toddler years worrying and wondering what his level of functioning would be and spending time doing lots therapy. I wish I would have relaxed and enjoyed him more in those early years. I hope you are able to do that. 🙂
So glad to meet you. Thanks for sharing your son’s story.
He sounds like an amazing boy! Would love to see a picture if you feel so inclined to post one in the Photo Gallery.
What are you doing to manage his bowels now, if you don’t mind my asking. Have you considered attending one of the bowel management programs?
Two articles came to mind for your son and his future mobility:
With a combination of Anat Baniel Therapy & strength training, I wonder if he could improve his gait, to make it easier for him & more natural and stable.
Glad you are here and look forward to chatting more.
I tried to add a picture to my post but it said I didn’t have permission to do so. I was able to add a few pictures to the photo gallery though so thank you for that suggestion. I have been to a bowel management program they offer at the hospital here and they just mention the same stuff….timed cone enema, fiber, good nutrition and timed laxative (usually senna or miralax are their suggestions). I loved the strength training article and the Feldenkrais method article as well. It looks to me that I would need to find a practitioner that knows the feldenkrais method, is that right? I don’t see any in Utah. It’s cool how they can analyze her gait and it made me laugh about her saying she doesn’t wear out her shoes anymore cause my son drags his right toe as well and needs new shoes every 2 months. I am a certified group fitness instructor with the goal of becoming a personal trainer so I definitely believe in strength training! Making it fun for him is the hard part. he actually loves to work out with me though 🙂
The article refers to Feldenkrais, but what most of us do is Anat Baniel Method. Anat was trained by Mosche Feldenkrais, but while he spent most of his time with athletes, she branched off and tailored her technique for special needs kids.
It’s truly amazing. Check out this video. It’s long, but so worth it. Toward the end of the video she talks about how kids gain milestones to their parents surprise, not by working on the milestone itself, but by working on mastering & perfecting their current movements. And this is so true!!!
I feel silly even listing this because it sounds too good to be true, but my daughter has gained a milestone after almost every intensive session, first rolling back to front, then sitting, then 4 point crawling. And each one sometimes within hours or days of the end of an intensive lesson.
Oh, ha, the whole reason I logged on just now was to give you the contact info for two ABM practitioners in Utah.
L.O Bird Muscle Therapy & Massage
3900 So. 260 E.,
Salt Lake City, UT – 94107
“Feldenkrais, Pain, Stress, Relief, Sweedish Massage, & Deep Tissue”
ABM Certifications and year achieved:
Anat Baniel Method Practitioner 2007
ABM for Children Practitioner 2007
Anita Miller Reardon
Draper, UT – 84020
Phone: 801 572-2486
Cell: 917 826-6222