Looking for bowel routine input

Hello! I’ve been on baby center quite a bit lately with bowel questions. I thought I’d pop in over here for some more specific advice. A little history on Korie. She has been on Fruit Eze for a while now, it is keeping her at a good consistency (if Im consistent about giving it to her). We have always used an occasional glycerin supp. to get her going. Seems like prior to the last month or two once she started going she would continue to push and evacuate her bowels pretty well. Over the course of the last month or so we are having to use glycerin daily, and often several daily with a lot of belly massage. I started her on Senna, per the recommendation of a Cincy dr. and it is helping, I think. But I am still using a lot of glycerin and much time is going into belly massage (which she is starting to frown at me for).

She has only had Miralax once, prior to last week. She was about 4 or 5 months old and I gave a a few small doses before we started the Fruit-Eze. Last week I gave her big doses on Mon and Tue and she had a seizure on Wednesday. I am meeting a lot of resistance about whether the two are related, and maybe we will never know, but I certainly will not give her anymore. I called the dr at CHoP, to get her opinion, and her assistant told me they are not fielding questions yet, that I should try back at a later time. I did report it as an adverse event on the FDA site.

I have fish oil sitting Β on my counter. I have been wanting to start her on it for all if its good benefits, not just bowel benefits. I’m just not sure where to start. She also take Flora-Baby probiotic daily.

We’ve had good discussion about starting enemas on her early. Im not sure what to do. The thought of doing the daily enema and taking away the “guessing game” as to whether she is backed up or not is very appealing to me. However, I wouldn’t want to ever take from her the ability to go to the bathroom on her own. And Im not sure enemas would do that, but I feel like I really need to take the time to make informed decisions. In the meantime, I HAVE TO get her on a better routine so I am not constantly stressing about it.

Any help would be appreciated.

Dana

33 comments

  • 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 πŸ™‚ 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 πŸ™‚ 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.

  • http://www.target.com/p/safety-1st-newborn-nasal-aspirator/-/A-14061596?ref=tgt_adv_XSG10001&AFID=google_pla_df&LNM=14061596&CPNG=Baby&kpid=14061596&LID=9pgs&ci_src=17588969&ci_sku=14061596&kpid=14061596&gclid=CjwKEAjwpYeqBRDOwq2DrLCB-UcSJAASIYLjrUaTmcj-U-IRZG5spoz8z6rsRfWZ9uE2ADijOukrLxoCYLjw_wcB

    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:

    https://www.1000bulbs.com/product/112746/GROW-740610.html?utm_source=SmartFeedGoogleBase&utm_medium=Shopping&utm_term=GROW-740610&utm_content=Garden+and+Growing+Accessories&utm_campaign=SmartFeedGoogleBaseShopping&gclid=CjwKEAjwpYeqBRDOwq2DrLCB-UcSJAASIYLjsf5624jQazMV2vW8GzuI82UUpn2KcBXWe39LaBfB-BoCRVnw_wcB

    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.

  • 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.

  • 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! πŸ™‚

  • 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 πŸ™‚

      • 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:

            http://spinabifidanaturally.com/abm-discussion/

      • 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!

  • 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 πŸ™‚

      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! πŸ™‚

      • 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!

  • 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!!

  • 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?

  • 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.

  • 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.

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