Well, I e-mailed ABR with questions about botox and back braces and I thought I'd share their answers with you guys. I'm going to summarize, though, because they have some fairly long explanations.
Firstly, I'd like to say that there is a lot of misinformation about ABR. ABR does not discourage parents from pursuing additional therapy if they would like and encourages us to have an open dialogue with our doctors about ABR. From my experience, Charlie's doctors consider ABR a non-entity. They've never heard of it, don't ask many questions, and seem satisfied once they hear that it is non-invasive. I dare say most of them immediately file it in what my father calls "the circular file." That's fine by me. I consider doctors resources and not all-knowing beings, so I don't need them to keep abreast of every detail in Charlie's life. That's my job.
On the question of Botox, I received a two part answer. The first part of the answer was, "no, Botox is in no way counter-productive to ABR." Good. I'd hate to be working against myself. The other part of the answer told me to be mindful that Botox is not FDA approved for children (no surprise there) and that at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine, they were cautioned that little is known about the long-term effects of Botox. She also advised me that Botox is not really a long-term solution, which I knew.
Her comments on the scoliosis thing were really interesting. Basically, she said that something like a back brace is designed to reduce further spinal damage and compression. It does not, however, make a person any stronger. ABR seeks to make a person stronger and also to create space between the vertebrae. So, we could get the back brace if we want--our decision. She then sent me pictures of Charlie's spine. The first set of pictures were taken during our initial visit to Montreal in October of 08. The second set in November of 09--roughly a year apart.
In this first picture you can see that Charlie's spine doesn't bend when he's tilted to the side. This is abnormal. A normal spine is quite bendy. Having a fused, locked spine can really impede your ability to get things done.
In this picture you can see that Charlie's spine is beginning to have some bend to it. It's not perfect, but being able to balance in the sitting position has become a lot easier and this is part of the reason.
There are several other structural changes to Charlie's body that I can see in these pictures, but I'll save all that for when they send me our annual review. For now, I know that if I go with the back brace or the Botox then at least I won't be working against myself. One less thing to worry about.
