Tuesday, January 6, 2015

Spina Bifida Occulta

Sometimes when you're going through treatments and therapies and surgeries, the diagnosis just goes by. Doctors don't mention it and unless you get a copy of the chart or specifically ask- and sometimes things are left unsaid. 

We got confirmation a few months back that James has spina bifida occulta, a neural tube defect that affects approximately 10-20% of the population. While some people have no complications or symptoms, James has definitely had problems. He has a lot of the hallmark issues of a spina bifida kid- the mobility issues, hydrocephalus, tethered spinal cord, motor skill concerns, etc. It's unfortunate for James that he was diagnosed so late and that his mobility was affected - but we realize that he is in a much better position than a lot of others and we are thankful for that. And finally, we believe that there is a good chance that James will continue to make progress as our Neurosurgeon is confident that there was little or no impact on the nerves around the spinal cord. 

A crucial agenda for us is working to build new neurological pathways and focusing on neuroplasticity with James. Recognizing that his learning style and developmental path is unique, we have added a few distinct therapies to help James reach his full potential. If there's one thing I know about James- it's that he is determined to succeed and will do it his way. 

James has been working with a Feldenkrais Physical Therapist weekly for the last few months and we have seen dramatic improvements in the way he moves. With Feldenkrais the idea is learning how to move, addressing existing issues and working around them. It is gentler and by nature, not repetitive and forceful like physical therapy tends to be. Historically James has had very solid motor planning skills but has recently accomplished the task of getting in and out of his high chair independently using a step stool, which is huge. He is forever looking for new methods and testing the waters, trying to figure out the best way to do things. 

Our new therapist is not replacing Early Intervention- merely working with James on common goals that will continue once EI ends in June. In a few short weeks we have noticed that James is much more engaged with our new PT. She has demonstrated a sincere willingness to help James with his needs versus attempting to force him into activities that aren't compatible for his interests or his functionality. It's been fascinating to watch and learn from. 

We also just started Gonstead Chiropractic - our close friend and fellow pProm mom Jill is a practitioner, and has seen amazing results with her own children. Jill has offered to work with both James and Maisie, with a goal of improving their overall health and well being. After the first session, we noticed immediate improvement in James's range of motion in his lower back and hips. His feet were also attended to, and following the session James had much more flexibility in his feet. It makes exercises, mobility, and therapy much easier. 

So where does this leave us? I have some hesitation with the Botox procedure, but I understand why it has been proposed. I am just not sold on the idea that it will help James. They've said Botox is effective for 3-4 months, but for someone two and a half that is a good chunk of time. He doesn't have a Cerebral Palsy diagnosis, and while there is some spasticity and tightness in some muscles- it isn't all the time and he has pretty good functionality that I don't want to lose. So, the more I try to envision the goal of getting James's feet to a good position for walking, preventing long term issues, addressing the pronation, and continuing to build muscle strength I just don't see Botox lining up with these goals. Perhaps there is another solution that would be a better fit, and we just haven't found it yet.


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