When we found out that Tillian had Spina Bifida, I was determined to find ways to improve the quality of her life. Having already waded through unknown and severe autoimmune issues with her older sister, I was disgusted with the medical profession’s motto, “Living with…” Who wants to live with disease? Now granted, a birth defect is different, but I was still convinced that we could do things differently and beat the statistics. From the beginning my inquiries were met with negativity from all sides. If I wanted to go above and beyond and try harder in whatever area, from continence to walking, all I got was scoffing and negativity. I came to refer to her two orthopedic surgeons as Dr. Doom and Dr. Gloom. I eventually shut my ears to their negativity and just used them for what I needed done. The line from one of the penguins in Madagascar rang in my ears, “Just smile and nod, boys!” I later met another mom who had used the same doctor. She told me she went once, left crying, and never went back.
In the early days, I researched and researched, and we tried everything, but most things only produced temporary results. We tried Anat Baniel Therapy (ABM), Feldenkreis, Masgutova, Zea Mays (Corn Silk), Craniosacral, Acupuncture, d-Mannose, Triphala, ADMs, Gotu Kola, Hippotherapy, Aqua Therapy, etc. If I thought it might help, we tried it. But not many things actually produced long lasting changes.
The things that have really changed Tillian’s life are Belladonna, Cleanse More, Neuromodulation and NACD, as well as the many orthopedic surgeries that have helped return her skeletal structure to neutral.
Some refer to Spina Bifida as the “snowflake condition” because no two cases are identical. And it’s so true. Even when the defect level is the same, the things each child struggles with can be so different. Some are constantly battling shunt and tethering, others scoliosis and other structural deformities, for us, one of our biggest battles has been wounds. And not just recurring pressure sores, but wounds that turn into bone infections (osteomyelitis). We have recently learned from another mom that there is a doctor at Texas Children’s that recommends surgically closing these types of wounds to prevent them from reopening. And it worked for my friend’s daughter – the chronic wound she had struggled with on and off for years never reopened. I have never found a doctor who was willing to close a sacral wound on a pediatric patient with Spina Bifida. This is the glory of collaboration and why I am so committed to this website.
Our other big battle has been orthopedic issues, specifically internal rotation, from the hips, from the tibias, in the feet – You name it, we’ve got it.
A lot of families I know really struggle with bladder and bowel issues, but we found solutions very early on.
Like almost every other child with Spina Bifida, Tillian struggled with severe constipation from the very start. My milk supply wasn’t the best so I was forced to make a homemade formula using raw goat milk. Our local naturopath helped me with the recipe. We added a tad bit of molasses to help with the constipation. This worked while she was on liquids, but once we added solids, we struggled again. We used a lot of the typical things, but I was dead set on finding something that would strengthen rather than weaken her bowel. When searching for neurogenic bowel, I found a product recommended by someone who had neurogenic bowel from Multiple Sclerosis. I tracked down the product and began experimenting with it. It had Triphala in it, which was one of the herbs (actually three herbs) that was recommended for toning and strengthening the bowel. This product worked miracles, but it tasted bad. I tried to hid it in drinks, homemade treats, nothing would mask the taste. I finally just gave it to her in a syringe with maple syrup. She didn’t like it, but she took it. Fast forward a few months and we ran out and couldn’t find it locally. We had to wait a week to get an online shipment. But guess what? Her bowels continued moving without issue. I am super leery of the word “cure”, but I don’t know how else to put it except to say except that Cleanse More from Renew Life cured Tillian’s bowel. Our entire family still uses the it from time to time, as needed. But it’s a rare thing for all of us, including Tillian.
Once we overcame constipation, we needed to work on continence. Having limited sensation, it was hard for her to know when she needed to go. So on the recommendation of our urologist, we visited a local continence center. It was here that we learned the Diaphragmatic Breathing Protocol, which changed our lives. It not only works for Tillian, but other family members also use when the have bouts of constipation. I think a lot of people think you have to push harder when you are constipated, but it’s actually the opposite, relaxing and breathing is the best way to get things moving along. So whenever Tillian uses the bathroom to cath herself, she uses the Diaphragmatic Breathing method to move the stool while she is sitting on the toilet.
I was dead set on avoiding bladder and bowel drugs. I did a ton of research. I googled until my hands turned blue. Then one morning I woke up and thought… I wonder if there is a Naturopathic doctor who specializes in urology? Back to the keyboard I went and could only find two in the whole nation. I reached out to both of them – one of them was Dr. Yarnell and I never heard back from the other one. He had never treated a child with Spina Bifida, but was open to helping us. After thinking about our case, he suggested belladonna. And 30+ Spina Bifida patients later, here we are. Belladonna has become a tried and true alternative remedy for neurogenic bladder. It has worked great for us and we’ve never had any of the side effects that you often see with the anticholinergic drugs.
Like many kids with Spina Bifida, Tillian’s eyes sometimes turned in. Early on we found that one craniosacral treatment would be all she needed to correct it, but over time it because something we needed to deal with. Initially we tried glasses, but as she crawled they would fall off and get scratched up. It just wasn’t working. I actually wrote to Dr. Yarnell asking if there were any “natural” opthomologists. He did some asking around and gave me a few references. We ended up choosing Dr. Virk in Seattle. He did a full evaluation and recommended Ortho-K, which are hard lenses that you wear to reshape your eyes while you sleep. The effects last through the daytime. It’s almost like recharging your eyes at night so they can see during the day. Though the correction was only supposed to be temporary, we soon found that we could skip a night and then went to once a week, and eventually she no longer needed them at all. Her esotropia never returned. She no longer needs any intervention for her eyesight
When we were first evaluated by NACD, the results showed that Tillian was functioning about 5 years below her actual age. This not only affected her math and reading, but her maturity, her interests, her ability to communicate, her emotions. It affected everything! We have been doing NACD for a little over 2 years and she has skyrocketed in every area, in some cases as much as 7 years of progress in just 2 years!!! As a result, her personality, sense of humor and interests have blossomed. She is a different person. I can’t recommend NACD enough. If I had to recommend just one thing, it would be NACD hands down!
I failed to mention that they also have a mobility portion of their program, which includes exercises and activities to improve sensation, posture and function. After her initial evaluation, they helped us identify structural issues and encouraged us to find solutions. They even reached out to other NACD families for recommendations, which is how we found the Paley Institute & Dr. Feldman. Dr. Feldman, where do I start? After dealing with Dr. Gloom and Dr. Gloom, for so long, Dr. Feldman was a breath of fresh air and an answer to years of prayer. He was visibly disturbed at the poor care Tillian had received and was extremely optimistic that with a few surgeries she would be able to learn to walk. He even muttered something under his breath about flying out to give Dr. Doom & Dr. Gloom a piece of his mind. His optimistic innovative approach was exactly what I needed. We flew out to Florida and during 2 different visits, one for 3 weeks and the other for 5 we had 2 corrective surgeries, followed by Physical Therapy. I can’t recommend the Paley Institute enough!
Tillian is still learning to walk, but without Dr. Feldman, we wouldn’t be where we are now, which leads us to our next topic – Neuromodulation – the Hastings-Edgerton method. This is a game changer. A lifetime of lordosis, gone in a week, but probably more like the first day. I didn’t really pay attention; it was just gone! Slowly but steadily, neuromodulation has been transforming both Tillian’s posture and gait pattern. Everyone involved is confident she will walk someday. Sadly she has 10 years of bad habits to correct and therapy keeps getting interrupted due to wound problems, surgeries and bed rest. If only we had started Neuromodulation when she was a toddler.