Posted by: mattsmom ®
01/24/2010, 22:58:34
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Thank you for your reply and concern. Matthew has a genetic disorder. He is one of many relatives with this type of dystonia. He has dystonia in most of his body. He is unable to do anything that requires fine motor skills and walks with a gait. He has difficulty feeding himself, unable to write etc. He just poured his first drink the other day only spilling a little bit. He doesn't have any pain with his dystonia so we haven't been very aggressive with treatment. For the most part he copes quite well in an enviroment where he feels comfortabe. Anxiety controls most of his movements. As he approaches his teenage years, he is becoming more self concious of peoples stares. If we do dbs it would probably be before he enters high school. He has a cousin that has had it, and apparently it worked like a charm. We won't jump into anything quickly. Matthew has had voice tremors for years but this huffing and breathing problem just started about a month ago, so the doctors haven't seen this new symptom yet.
Do you think that is sounds like dysphonia?
Thanks again, Cathy
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