Aa
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?
HI Bonny54 and Pumpkin450
My sister has Downs and is 47yo. She developed dystonia about 4.5 years ago. We thought initially it was a new "tick" that she had developed but after sometime knew it was something more. She now needs to be in a wheelchair to go out and has a special dining and lounge chair for eating and watching TV etc. She can still walk around but it is difficult and she needs to hold her head to walk - this is tiring for her. She splashes water on her neck regularly to "cool" her neck as it gets hot.
She has been having botox injections for about 2 years now and the only way we know it must help her is just over the 2 month mark she is wanting to know when her next needle is.
I too would like to know if this condition is becoming "common" in people with Down Syndrome and the only reason it really may not have been seen earlier is many of these people like my sister have had life saving heart operations that 50 years ago was just not available at all.
I have also read that Dystonia can be triggered by stress and the onset of the dystonia can be linked when our mother first started showing signs of getting Alzheimers.
My sister has Downs and is 47yo. She developed dystonia about 4.5 years ago. We thought initially it was a new "tick" that she had developed but after sometime knew it was something more. She now needs to be in a wheelchair to go out and has a special dining and lounge chair for eating and watching TV etc. She can still walk around but it is difficult and she needs to hold her head to walk - this is tiring for her. She splashes water on her neck regularly to "cool" her neck as it gets hot.
She has been having botox injections for about 2 years now and the only way we know it must help her is just over the 2 month mark she is wanting to know when her next needle is.
I too would like to know if this condition is becoming "common" in people with Down Syndrome and the only reason it really may not have been seen earlier is many of these people like my sister have had life saving heart operations that 50 years ago was just not available at all.
I have also read that Dystonia can be triggered by stress and the onset of the dystonia can be linked when our mother first started showing signs of getting Alzheimers.
HI Bonny54 and Pumpkin450
My sister has Downs and is 47yo. She developed dystonia about 4.5 years ago. We thought initially it was a new "tick" that she had developed but after sometime knew it was something more. She now needs to be in a wheelchair to go out and has a special dining and lounge chair for eating and watching TV etc. She can still walk around but it is difficult and she needs to hold her head to walk - this is tiring for her. She splashes water on her neck regularly to "cool" her neck as it gets hot.
She has been having botox injections for about 2 years now and the only way we know it must help her is just over the 2 month mark she is wanting to know when her next needle is.
I too would like to know if this condition is becoming "common" in people with Down Syndrome and the only reason it really may not have been seen earlier is many of these people like my sister have had life saving heart operations that 50 years ago was just not available at all.
I have also read that Dystonia can be triggered by stress and the onset of the dystonia can be linked when our mother first started showing signs of getting Alzheimers.
My sister has Downs and is 47yo. She developed dystonia about 4.5 years ago. We thought initially it was a new "tick" that she had developed but after sometime knew it was something more. She now needs to be in a wheelchair to go out and has a special dining and lounge chair for eating and watching TV etc. She can still walk around but it is difficult and she needs to hold her head to walk - this is tiring for her. She splashes water on her neck regularly to "cool" her neck as it gets hot.
She has been having botox injections for about 2 years now and the only way we know it must help her is just over the 2 month mark she is wanting to know when her next needle is.
I too would like to know if this condition is becoming "common" in people with Down Syndrome and the only reason it really may not have been seen earlier is many of these people like my sister have had life saving heart operations that 50 years ago was just not available at all.
I have also read that Dystonia can be triggered by stress and the onset of the dystonia can be linked when our mother first started showing signs of getting Alzheimers.
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
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
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
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