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Recent Treatment Reviews

Diaper cream and cloth diapers

Diaper Rash Wound Care

★★★★★

“I swear by cloth diapers. Not only does it greatly reduce the incidence of diaper rash, but also help reduce waste and reduce cost. Cloth diapering these days is very, very simple - no more diaper pins and folding! Seriously soooooo easy! When there is diaper rash, you can still use diaper creams, but have to be careful to not get the creams onto the diaper (some of them can damage the wicking/drying ability of the diaper). I just put a single Via paper towel between the diaper and baby to protect the diaper when using creams. My LO recently had a fungal diaper rash after being on mega antibiotics for a presumptive UTI. My favorite cream to use was a mixture of Critic-Aid (by Coloplast), any OTC anti-yeast cream (like Vagisil), and hydrocortisone. I hated using medicated ointment, but it cleared the rash up quickly, so I could go right back to plain cloth diapers without the paper towel and only natural creams when needed.”

- Tracy

Water therapy in all forms is amazing!

Aqua Therapy

★★★★★

“My 11 year old with SB is a mermaid! She is the first one in the pool or lake and the last one out of our 5 kids. She tells me she feels "lighter" in the water and "more mobile." I have noticed that after our aquatic therapy sessions or a week at the lake, she is much more confident, mobile, and generally in better health. I highly recommend finding a therapist who is willing to work in water or find a swim instructor who has experience with special-needs kids.”

- Lydia Wells

Yes, yes, yes! Highly recommend!

Mitrofanoff

★★★★★

“My daughter had this procedure, along with a ureter replant and bladder augmentation, 5 years ago (when she was 6). It has been the best surgery for helping her to maintain independence. She catheters herself every 3 hours during the day, simply goes into a restroom with her purse and sits on a toilet just like a typical person. Insert cath into belly button and allows urine to drain into toilet. No one has to know that she isn't peeing in the typical manner. This has been great for public independence. She still wears a pull-up at night due to not cathing all night, she leaks when bladder is really full. This surgery also really cuts down on urinary tract and bladder infections.”

- Lydia Wells

Still not sure how I feel

MACE

★★★☆☆

“This surgery does have a high success rate. My daughter had this procedure done 2 years ago and it has been one corrective surgery after another, multiple infections, etc. I will say, she is definitely staying "clean" during the day, so that is a plus.”

- Lydia Wells

Excellent

Hippotherapy

★★★★★

“We did hippotherapy for about a year and hope to start back again soon. My daughter experienced increased mobility and flexibility and her confidence soared.”

- Lydia Wells

Celebrating being shunt free

ETV CPC

★★★★★

“My daughter had her ETV/CPC at 7 weeks old. We are so happy with the results and excited about the potential for a shunt free life - one less thing to worry about. For reasons not completely understood, even if the ETV "fails", then a shunt is more likely to be successful and not need revisions. We are so fortunate that our neurosurgeon, who trained directly with Dr. Warf, was able to transform our baby's life! 5 stars!”

- Tracy

Myofascial & Clubfeet

Manual Therapies

★★★☆☆

“We tried myofascial release with our daughter's clubfeet. And while it did have pretty impressive results, they were very temporary, and her feet quickly regressed. I do believe in this treatment and it's ability to help relieve pain and release tightness, but do not believe it is effective as a treatment for clubfeet.”

- TSpar

Skeptical of Treatments in China/Mexico

Stem Cell Therapy

★★☆☆☆

“At one point, my husband and I had decided to take my daughter to Mexico for a stem cell treatment and were so excited at the possibilities. However, we spent countless hours researching and making phone calls and we could not find any medical professionals that supported the treatments. Every doctor we spoke with firmly believed that the science was not there yet and by going to Mexico/China we would not only not see results but we would be putting our daughter in the care of medical facilities that don't follow US protocols and could adversely effect her health. We also spoke with several stem cell researchers--people who firmly believed in the possibility of future treatments--but all said what was currently offered was not doing anything. When I spoke with a doctor at Kennedy Krieger she said that when/if studies become avail in the US as science evolves, anyone who sought treatment outside of the US would not be eligible for those studies. I also spoke in depth with the representative from Nova in Mexico. When I asked her if stem cells helped bowels, she emphatically said yes. When I pressed her for details, she told me the story of a boy who felt his bowels for the first time, had a stomach ache, but the improvement did not go beyond the feeling--no decrease in medication, no increase in sphincter control, no ability to control bowels, etc. I didn't find those results very convincing. I am extremely hopeful for stem cells in the future but am very skeptical of the current treatments in Mexico and China.”

- Camilla

LOVE Aqua Therapy

Aqua Therapy

★★★★★

“Instead of actually going to aqua therapy (expensive and another appt to worry about), we bought a hot tub and its been so great for Claire. She always learns new skills in the water long before she can do them on land. For instance, she learned to cruise in the water a month before she did it in the house. Currently, she is working on standing independently in the water. We leave the temp at around 90 degrees and don't use any chemicals--just pour in epsom salt and change the water often. Yesterday, she spent almost three hours in there and I had to pry her out. Its really fun to watch her in the water because she is capable of doing so much more and loves the freedom.”

- Camilla

Life Changing

ETV CPC

★★★★★

“I would give this 100 stars if I could. This surgery changed the course of our daughter's life. SB has many challenges, but thanks to Dr. Warf and this procedure, the challenge of shunt failure will never be a part of our girl's future. Because this was successful for her it has reduced greatly the number of hospital visits she would otherwise have over her lifetime. That, in turn, reduces her risk of disease exposure, medication reactions, wear on her body, delays in her development because of hospitalization, trauma associated with doctors and on and on. It has purchased for her freedom that nothing else could have provided.”

- Mrs.K

Just Not Sure

Craniosacral Therapy

★★★☆☆

“We started craniosacral as recommend by our PT for my daughter's head shape (neurosurgeon recommended helmet) and overtime her head shape did improve--I think partially from the treatment and partially just from time. I recommended it a a friend and her son tried it for awhile and then ultimately decided to get a helmet because the results were not dramatic enough. After our craniosacral doctor moved, we tried two others and I didn't see any results from those appts--and paid quite a bit out of pocket. At that point, we just decided to move on to treatments that I saw a quicker/more obvious results.”

- Camilla

A daily routine

Fruit-Eze

★★★★☆

“We've been using this product for some time. Overall, we have been very happy with it. It absolutely improves motility and, when combined with molasses seems to provide a good, regular movement without being difficult to pass or becoming too watery. It did take some tinkering to work out what dosage and combination works best. And it does require patience. Little SB bowels are slow and it may take several days to a week to begin to see a real change. This is not a constipation correction, if an issue already exists. But it is a wonderful way to help protect intestinal health and prevent constipation from developing. We use it daily, but have only rated at 4 stars because it does take a little work to get it "just right".”

- Mrs.K

Not for us

Craniosacral Therapy

★☆☆☆☆

“We tried this treatment on the recommendation of our pediatrician and several moms. But while it was interesting, and certainly not harmful, neither could we see it as beneficial. I later did some reading into how the treatment was developed, writings of Dr. Upledger and the premise on which it is based. It all seemed very unlikely to me. Some of Dr. Upledger's writings were really "out there" in a way that made me uncomfortable. The premise of CSF having its own pulse that can be manipulated via light touch through bone seems unlikely. More, in our daughter's case, her choriod plexus is cauterized, so it seems even far less likely. This just didn't seem worth chasing after, particularly when our resources are limited and treatments need to be prioritized.”

- Mrs.K

MD & ND - they both say it's working!

D-Mannose

★★★★★

“We have been giving our daughter D-Mannose since she was about 6 months old. And though she is colonized with e-coli, she has never had a symptomatic UTI. We recently went to Seattle for clinic, but while we were there we saw a Naturopathic Urologist at Bastyr in Seattle. He said that he believes that the reason her e-coli is non-symptomatic is because the D-Mannose prevents it from attaching to the bladder wall. He explained that the reason she still remains colonized is because she always has residual urine in her bladder. Surprisingly, the urologist at clinic recommended D-Mannose as well. When I told him I was already giving it to her, he said he thought that was probably why she was doing so well. I was shocked to hear those words from an MD!”

- TSpar

Possible Treatment for Symptomatic ACII???

Scalp Acupuncture

★★★★☆

“I just read two books on Scalp Acupuncture. The first, "From No Hope to Know Hope," was written by the mother of a child with Cerebral Palsy and, to be honest, her story was astonishing. After finishing her book, I immediately ordered the authoritative book on the subject, written by the doctor who brought this method to the US 25 years ago, Dr. Jason Hao. The results described in the case studies in this book are just as remarkable. Though we haven't tried this method yet ourselves (there are no practitioners in our area), as I was reading Dr. Hao's book I kept thinking about the potential benefits for symptomatic chiari and for cerebellar malformations. The book lists a whole host of nervous system disorders (with case studies), but I thought I would mention the following conditions specifically: Paralysis, Spinal Cord Injury, Dysphagia (difficulty swallowing), Vocal Cord Paralysis, Aphasia & Apraxia (speech disorders) & Seizures. Whether we are able to find a practitioner closer to home or have to travel to Dr. Hao's clinic in New Mexico, we hope to try this treatment in the future to help our daughter's mobility. Though our daughter's ACII is not symptomatic and she does not have any cerebellar problems, we will be anxious to hear from other who can use this treatment to help such conditions.”

- TSpar

ABM Really Works!

Anat Baniel (ABM) / Feldenkrais

★★★★★

“We have had two ABM treatments. The first one when my daughter was only 5 months old. We had been working with traditional PT to get her to roll from back to front, but she seemed to be making no progress. Then the day after her ABM treatment she rolled over for the first time. Coincidence? Maybe. But a few weeks ago we had an ABM intensive, meaning three consecutive days of twice a day treatments - six total sessions. The results were truly amazing. The first improvement was the type that I expected - improvement in movement and function. Our daughter had always used both arms and legs to crawl, but she did it flat on the ground, not up on her hands and knees. So it was an army crawl using all four limbs. So our therapist worked on getting her up on all fours and she really improved in this area. She gets up on all fours and rocks and is working on crawling that way now. But the even more drastic improvement, that I didn't anticipate, was the improvement in her body's flexibility or looseness. I didn't realize how tight and rigid her body was. When I got home, I handed her to my teenage son and he almost dropped her because her body was so soft and pliable. And this affected her whole body, but most amazingly her feet and hips. She has dislocated hips which have always been extremely tight and clubbed feet that barely moved at all and both became extremely pliable. This improvement is truly incredible. We have been working on her clubfeet with every imaginable treatment, including myofascial release, achilles tendon release, stretching, splinting, casting, you name it. But nothing produced even close to this much improvement in the flexibility of her feet. I can't wait for our next intensive!”

- TSpar

Fixed Wonky Eyes

Craniosacral Therapy

★★★★★

“My daughter has been having craniosacral treatments twice a month since she was born. I can't know for sure, but I believe these treatments have contributed to her overall wellbeing. The craniosacral system stretches from head to tailbone and has a wave-like rhythm caused by the movement of cerebral spinal fluid. I have an amazing story. During a recent treatment, the therapist immediately honed in on my daughter's head and spent the entire session there. She had never done this before. Halfway through the treatment her eyes got big and she told me that she felt some serious movement on the suture between two of the cranial bones. She said it was "compressed" and then released. This made me remember that I wanted to talk to her about her "wonky eyes". For over a week my daughter's eyes had not been tracking perfectly. It wasn't constant and it wasn't severe, but it was noticeable by all members of the family. When I told her this she moved to a different suture that affects the eyes. She again felt movement. And then it hit me - - she had fallen off the couch the previous week! So here's the crazy part, after the treatment her eyes were back to normal. No more wonky eyes ever since. It was really amazing!”

- TSpar

Works wonders for Us

Acupuncture

★★★★★

“Have been seeing a acupuncturist since LO was about 3 months old. It has produced amazing healing of her scar, visible difference in days. It has also provided support for bowl and bladder. At 1 year we have had no incidence of UTI or constipation, and while it cannot be proven that that is credit to the acupuncture alone, I'm confident that the treatments have supported her good health.”

- Mrs.K

ABM

Anat Baniel (ABM) / Feldenkrais

★★★★★

“Starting ABM was a real turning point in Claire's mobility. Before ABM, I was working, and working, and working with her and she was actually under performing her prognosis. After our first few ABM appts, I could see significant changes in her. She was making sense of her body and as a result she started moving much more fluidly. In ABM, the practitioner does movements that teach the child effective ways to move their body. For instance, Claire has struggled with bearing weight with her feet flat on the ground. Traditional PT would put her in more bracing. In ABM, the practitioner does movements with her feet and legs, starting by moving them in the direction they like to bear weight and then gently moving them in different directions--essentially starting where the body feels comfortable and then gently teaching it new, more effective ways to move. Its so encouraging to go to appts and know that she will progress more and more and that her practitioner is working with her in a way that is not pressuring her, putting her in uncomfortable positions, or asking her to do what is difficult. Instead, she is gently leading Claire to learn new ways to move her body naturally--which then leads to concrete increases in mobility.”

- Camilla