severe dystonia

Our 14 year old son with down syndrome developed diabetes.,He was checking his own blood sugars, counting carbs and beginning to give his own insulin. Do very well, but then within two months of diabetes diagnosis developed what has progressed into severe disabling dystonia. He can't speak, eat, and sometimes is unable to walk. Cognitively he has not lost anything. Has anyone seen anything like this in children with Down Syndrome especially so soon after a diagnosis of diabetes?

[martikadragoon]

Hi,

unfortunately I couldn't find any causes for something like this and am not aware of something like this in children with Down Syndrome. Maybe Sandi has (Dragon 1973)?  
Have you spoken to his doctor about this to see if he/she knows whats going on with him?

Cindie

[Bonny54]

I had typed a long message in here but have lost it, I'd like to say to pumpkins450 that this as been and still is an on going battle I'm having to deal with, your son is now the 3rd person I have found who has Down syndrome and Dystonia, in my case it's my young brother who's 46, I'm in touch with a number of people who deal with my brother and who have not come across this, not even the Down Syndrome Society or the Dystonia Society,or the hospital who gives him his injections (botulinum toxin) in the back of his neck, I now have the Down Syndrome Society looking into this my phone call to them was the first they have had about this, even some doctor's don't know about Dystonia, my problem is my brother is not able to give us any real feed back only that his neck is sore, I can't see that the injections are much help this being the reason, "Botulinum toxin treatments are given on a three monthly regime. The medication is at its peak of effectiveness in the middle of the three month period, but for the time before the medication kicks in and the time when it is wearing off in its effectiveness, the spasms and pain associated with dystonia can be extreme" now he's been having some problems with his are so might be spreading, my point is we need help for those who can't give any feed back like others can, there also need to be more awearness out there about Dystonia, Please feel free to get in touch with me. in the meantime I'll leave you these links. www.dystonia.org.uk and www.downs-syndrome.org.uk

[Bonny54]

Is pumpkins450 still around ???