Needing the right style AFO for kids please read

December 10, 2004

Today was a very informative day. I took Adam my 12 yr old to Swiss Balance

in Santa , Ca, at Gretchen's suggestion. (Thank you Gretchen). I learned

so much about CMT and the right style AFO. It turns out that Adam has been in an

AFO that has actually been to strong for him. It was more for a child with

Cerebral Palsy (sp). The arch on the brace actually moved his ankle bone

backward. The new brace style will be more for children with CMT will hopefully

bring his ankle back to where it should be. The orthotist that we saw at Swiss

Balance works mostly with children. He knew about CMT and spent 1 hour and 45

mins with us. It was well worth the 2 hour drive.

I just had no idea how the wrong style AFO could do such damage. The orthotist

that we were seeing for the past 3 or 4 years never said anything to us about

the style that he was using being to much of a brace for CMT. The problem with

having to much of a brace is that the brace causes atrophy. So Adam now has

weakness that he could have done without. I wish someone could just tell me the

future so I would know what to do. Blah

December 11, 2004

,

Oh I am so happy to hear you took Adam to Swiss Balance. I didn't realize that

they have an orthotist who work solely with kids and then one for adults. So I

too am better informed, but it makes sense to take a child to a pediatric

orthotist.

Oh I feel for Adam and you, with that brace made for CP kids and the damage

caused to Adam. Obviously the former bracemaker was lazy and bought braces in

bulk and tried to push them off on all sorts of kids, rather than treat each

child's needs as special to THEM.

I can't tell you about the future, but I have every confidence in Swiss Balance,

in YOU, in Adam, and in the immense amout of energy you spend to make sure your

children receive the very best care they need. While I don't have children of my

own, you are truly a wonderful resource for CMT children's issues. I admire you

so much for how you love and respect your children.

Stay strong and let me know how the return visit goes. I am wondering if some of

Adam's leg muscle could be stimulated by TES to get him to the point to use a

kickboard in the pool or ride his bike - to see if strengthening may occur. With

less brace, and Adam's resilency, all is possible. Remember something: muscles

and nerves can compensate for each other.

Gretchen

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