Ada is currently seven years old. MMC L2-S1. Prenatal closure. Ambulatory at home and in the community but tires with longer distances, no VP shunt, no traditional bracing, no cathing, no bowel interventions, independently toileting.
Ada got a confirmed diagnosis of myelomenigocele (the most severe form of spina bifida) from L2 to S1 at 24 weeks 2 days. After a whirlwind of insurance referrals, preapprovals, testing, and consultations, we qualified for open prenatal closure at Cincinnati Children’s, which was performed at 25 weeks 6 days. She had enough tissue to close the dura and skin layer, along with most of the muscle layer using a small patch. I was on bedrest for almost 3 months at the Ronald McDonald House in Cincinnati. We had no complications during the remainder of the pregnancy and delivered Ada via c-section at 37 weeks 2 days. The repair site was completely healed at birth. Ada spent 8 days in the NICU, mainly to give the specialists time to monitor her brain, bladder, kidneys, bowel, and spine and to gather baseline data of those areas along with vision and hearing screenings and a manual muscle test. When we left the hospital, Ada had grade 2 reflux in both kidneys, mild laxity of the bladder neck, had a normal looking bladder, and did not void completely. The ventricles in her brain were enlarged but not to the point of needing intervention with a shunt. Ada’s urologist wanted us to cath her four times daily and start a prophylactic antibiotic to prevent UTI. After discussion of our concerns with prolonged, unwarranted antibiotic use, the urologist agreed to cathing three times daily and no antibiotic use in the absence of UTI.
Brain/Spine:
Ada had “fast” MRIs to monitor her brain health every two months up until twelve months. Around ten months, it looked as if Ada was inching closer and closer to shunt intervention, but her brain stabilized and improved allowing her to avoid a shunt. After age 1 when the brain stabilized, Ada’s neurosurgeon requested annual MRIs of her brain and spine for the next six years. At age six, she was cleared for biannual MRIs of her spine only. Ada does have a tiny 3mmx3mm syrinx at L2/L3, which is of no concern to her neurosurgeon.
Ada did have a focal seizure at age 6, which is unexplained medically. I believe it was connected to a combination of lack of sleep and oncoming illness.
Bladder:
Around six months of age, the urologist asked us to increase Ada’s cathing to four times daily. At that time, she had her first videourodynamics test, which showed high pressures at low volumes. We were told that we would likely have to start pharmaceuticals at her next visit if the pressures remained high. That prompted me to find natural alternatives to Rx interventions for fear of long term use and negative side effects. I found Dr. Yarnell on the SpinaBifidaNaturally.com site following that six month test. We met virtually with Dr. Yarnell and started Ada on Belladonna and Nerve Formula from Dr. Yarnell. Belladonna, when the dosage is too high, can yield the same negative side effects of some Rx medications, so we had to slowly increase the dosage and closely monitor for symptoms. Ada was nine months old when we started her on Belladonna, so it was very difficult to discern whether the dose was correct. This was extremely stressful on me. I knew of a local natural practitioner, who practiced iridology and applied kinesiology (i.e. muscle testing). He was my ace in the hole. No more stress about overdosing on Belladonna! I took the herbal tinctures to Marvin, and he was able to muscle test for the exact dosage to make sure we weren’t giving too much or too little. If my memory serves, we never gave Ada over 6 drops of Belladonna per day. He also found a few more herbal supplements that supported her bladder and kidneys. Oregon Grape and KID-W by Pure Herbs, Inc and Kidney Drainage by Nature’s Sunshine were used on and off over the course of several years. We have Ada muscle tested every couple months to make sure her organs are in harmony and give them support when they are in distress. Ada has been UTI free so far for the last seven years.
Bowel:
We have been able to avoid bowel interventions. Ada was breastfed for almost 18 months, which helped keep constipation at bay. As we introduced solids around nine months, I watched very closely which foods caused constipation and which foods seemed to cause looser stool. When constipation came, I would offer the foods that made her go (i.e. beans and lentils). We did intervene in the early years with liquid Calcium Magnesium by Integrative Therapeutics, George’s Aloe Juice, Klaire Labs Probiotics, occasional glycerin suppositories and senna (until I learned it was habit forming, making the colon lazy). Around age two, constipation was becoming a serious concern, and I was researching possible intervention with enemas. That’s when our lives changed. We found homeopathy. I will explain in more detail below.
Therapy/Ortho/Bracing:
Ada started PT with our state’s early intervention around 3 months of age. She was developing close to her peers until around 9 months of age; however, her head was so large and heavy it made rolling and sitting up quite the chore. We started with Cascade DAFO 3.5 around 9 months. We used those for probably ten months.
We got her a mobile stander around 12 months to support longer periods of weight bearing and a reverse walker. At 19 months, we started with NACD (the National Association of Child Development), which offers targeted individualized programs based on the whole person developmentally, not the traditional therapy model of each therapist working on “their” piece of the puzzle. NACD offers quite different solutions, aiming at the basic fundamental building blocks of a skill, which offers better results in the long run, albeit slower, requiring patience…oh so much patience. Based on the way Ada was swinging her legs out from the hip to walk, we had to start over with walking. They recommended we toss the walker and get rid of the AFOs, which we did even though it was VERY difficult to take away her ability to walk for the time being. Since 19 months of age, we have been doing all therapy at home using our at home NACD program, which is reevaluated and updated every four months, and the results are paying dividends. We still use NACD today with results that continue to build over time. Change is a slow process, but Ada has been able to achieve so much under the careful guidance of our NACD evaluator.
When Ada was four, we started using peripheral spinal electrical stimulation under the direction of Gerti Motavalli. We followed the protocol religiously for four months and saw zero change, so we didn’t do much e-stim after about six months. Ada’s former PT started using the protocol in her clinic and saw gains with her clients. She and I brainstormed why Ada might not have seen gains, and we both agreed we already got any “low hanging fruit” by using the NACD program and homeopathy.
Shortly after Ada turned six, we learned about a PT in the Atlanta area using spinal e-stim and neuromodulation, under the direction of Susan Hastings, in a different way than Gerti’s protocol. We saw quick results with Ada’s gait pattern along with marked increase in strength and balance. This protocol requires much more participation and attention to detail than the other protocol we tried, and we are yielding great results.
Today, at age seven, we don’t use orthotics, although Ada does use arch supports in her high-top sneakers. She walks all over the place, dances, runs uphill and down on uneven ground and gravel, hops, jumps, twirls, kicks, and dreams of skipping someday soon.
“The Miracle” Homeopathy:
Read Dr. Rai’s case study of Ada here: https://hpathy.com/clinical-cases/spina-bifida-in-a-girl-of-3/
When Ada was just over two years old, I learned of a homeopath in India, who had success in curing (yes, curing) a child with a milder form of spina bifida. When we started working with Dr. Rai (drraishyamji@gmail.com), Ada could take one or two steps independently. We had been working diligently at her NACD program for about six months to get to that point (after taking away her walker, which allowed her to walk all over the place). Within a couple weeks of using homeopathy, she could walk from the couch to the wall. Within three months, Ada was toddling all around the house. Not only was homeopathy helping her strength, it has all but cured her bladder and bowels. Remember when we found homeopathy I was in hot pursuit of an enema routine? That quickly ended. One of the first things we focused on was constipation. In a few months, constipation was a memory. Next, we focused on continence. I can’t say which thing helped Ada the most, but before starting homeopathy, Ada was cathed four times daily. She had great bladder and kidney scans, likely due to the use of Belladonna, the Nerve Formula, and other herbal supplements she was taking, and we were ever so slowly working toward toileting, which was part of her NACD program. Limited and frustrating progress, at best, was happening at that time. Once homeopathy came on board, there was a marked decrease in her cath volumes, increase in her sensation, and the sound of the flow when she used the toilet (more of a consistent stream versus fits and spurts, i.e. spasms of the bladder). Little by little over the course of two years, we were able to wean Ada off cathing altogether and weaned her off Belladonna and the Nerve Formula by age four and a half. Her urodynamics studies have been “as close to normal bladder function as a person with spina bifida could have” according to her urologist, so she was released from that test at age 5. Currently, she only has a renal ultrasound annually. It was a long, difficult journey to daytime continence, which was achieved at around age 5, when she still needed an incontinence pad in her underwear just in case. Right now at age seven, Ada is completely daytime continent. She goes to the bathroom at will, no timed breaks, no pad in the underwear. We are working hard toward her goal of underwear at bedtime, which is close as she was dry overnight ¾ of the nights last month. I haven’t noticed any marked change in her continence since starting neuromodulation, but it may be helping.
If you wish to follow Ada’s story more in depth, feel free to follow her Facebook page at: https://www.facebook.com/operationbabyklem