The Alternative View

I’m well-aware that some of you visit my blog because of your interest in alternatives. We are actively engaged in the alternative therapy ABR and people are naturally curious about that therapy and what is involved with it.

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.

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Comments

  1. Nathan Charlan says:

    I am really surprised by their response about botox, they are right that it is not FDA approved (but what is for these kiddos anyway). The part about not knowing the long term effects is strange because they have used it for many years for kids with CP (way longer than for what it is FDA approved for) you would think there would be some data out there.
    I know that it is a toxin we are putting in their bodies after working so hard to keep them away from all the "bad stuff", but I just want to say that our family has only had very positive results from its use so far. It is amazing how it helps the problem (high tone) areas without taking strength from the areas that desperately need it.
    Thank you so much for all the info you post. I love it!

    Renee

  2. Renee–thanks for your input. I haven't heard one family say bad things about Botox. I think "long-term" is relative, so I don't know the exact lenght of time they mean.

  3. Okay, so I am going to be the one to say bad things about Botox. Moo has had it three times. Twice by big city ortho, another by specialized CP rehab doctor. All three times it has had minimal effect, in that there has been no noticeable difference in tone. The last time under specialised rehab dr, Moo had a nasty reaction within days which took six weeks to get to a stage where it corrected itself. We've tried serial casting with Botox which got no gain.

    I'm sure that it works well with some kids but it is not the answer for ALL children.

  4. Well, I guess those things are good, Katy. It's really cool to see the differences in Charlie's back. It is so hard to make the med decisions…as you have talked about before.

  5. Mamá Terapeuta says:

    Yay!!! I'll be the next to tell you bad things about botox. My daughter had botox 4 times, arms and legs. The last time, because of her weight, they used a higher doze and she had a side effect called 'flu like', meaning she was like she was sick for about 6 months. Dead eyes, dead head, dead entushiasm, etc.

    Besides, all 4 times the botox effect only lasted a couple of months, and every 6 months you have to go again… My daughter was 3 last time, 30 pounds and already 3 'frascos' (jars???) of botox were needed: that is 1 thousand dollars and a lot of toxin.

    We were truly lucky because then we found ABR and once ABR got rid of her spasticy, we never had a problem again, her arm and legs are loose now.

    Check about botox and deaths. Here are some links in case you havent read them:

    Health Canada probes 5 deaths that followed Botox injections

    FDA: Children Treated With Botox Died

    If Charlie is not suffering due to spasticity, I wouldn't even think about it.

  6. Thanks for the helpful thoughts!

  7. Alan is having his Botox stopped since we know that it is not a long term solution and where he is at now with his range of motion is most likely the best that he can hope to have.

    I am glad that you asked. Being informed is one of the most important things you can do for Charlie.

  8. Wherever HE Leads We'll Go says:

    Great information. Thanks for sharing these things – it really gets me thinking about the choiced I make and why.

    I would love to try alternative therapy for Emily, but money is the thing that keeps that from happening right now. Why does everything have to be so crazy expensive?

  9. Noah's Mom says:

    Hi. I've been looking into ABR lately for my son, Noah. Reading you blog has kind of put a fire under my feet to pursue it even more. I would love to ask you a couple of questions if you have the time. If you wouldn't mind helping us out my email is: dishncb@yahoo.com

    Thank you so much.
    Tricia

  10. hmm. giving me something to think about. Brian and I worry about Clayton's spine CONSTANTLY.