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Dystonia



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amother


 

Post Thu, Jan 19 2012, 10:13 am
Our 10-year-old son has been having involuntary muscle contractions in his arms and legs. We took him to a pediatric neurologist and were told that he most likely has dystonia- and probably DYT1 dystonia, which is common in Ashkenazi Jews. We are waiting for the blood test to confirm, but right now I am scared out of my mind. I've been reading up on this disease and it seems like it is difficult to treat and most children with it end up in a wheelchair.

Does anyone have any experience with this? Any advice? Any treatments that have helped?
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