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5552Re: [Myotubular_Myopathy] Contractures

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  • Scott & Betsy Grant
    Jan 11, 2008
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      Liz,
      My son Kyle has had pretty severe contractures in his knees, unfortunately. We tried different things, like sandbags or weights on them at night, regimented stretching sessions during the day, without great  progress  Then we finally got the right therapist who was able to recommend and fit Kyle for custom-made leg braces that he wears at night, they have a hinge on them at the knee that naturally puts some constant pull, and you can adjust them for how strongly you want them to pull. They are really great and we're finally seeing those contractures disappear!
       
      What are other's experiences with standers? I was in contact with someone who said it was a great tool, (Beth?) but I wondered if you saw leg strengthening with one. We have one in the works, I have to contest it with the insurance company since they'd rather not pay for it.
       
      Botox, haven't really heard of it for treatment except maybe in the case of cerebral palsy? I'd love to know more as well.
       
      Betsy


      On Jan 11, 2008 1:36 PM, Elizabeth Peil <elz0221@...> wrote:

      I was wondering if any of your children have contractures.  Chaz's legs have pretty severe conntractures in them.  His PT and I were discussing different ways to try to stretch him out.  She told me that they do botox injections to help with stretching, I was wondering if any one has tried this before or if you have even heard of it.  I am not even sure that it is an option with MTM to use the botox to help with the muscle tightness.  Any info any of you have on this would be great.  Thank you.
       
      Liz


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