Dystonia Support Group

Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may affect muscles throughout the body, in certain parts of the body, or may be confined to particular muscles or muscle groups.

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parents of children with dystonia

hi i'm new here..i was wondering if there were parents who's children have dystonia..i have a friend who has a 2 year old son that has it and she is looking for other parents that she can talk to and maybe get some help with some of the problems that she has with raising a child so young with this disorder..

thanks for any help you can give me..

look forward to getting to know everyone here!!

Replies

deleted_user
deleted_user

i'm not a parent, but i have dystonia. it came when i started geodon. i don't know if i could help, but message me anytime.
deleted_user
deleted_user

My daughter was 8 years old when diagnosed with dystonia. She is now 23. Let me know if you'd like to chat more.
deleted_user
deleted_user

Hello..Ive just joined tonight.My 5 year old daughter has dystonia.She started her symptoms at age 2 when she was trying to walk.She mainly has stiffness in her right leg,but does have tremors and her fine motor skills are bad.She takes Artane 3 times a day,which has been helpful.Im interested in talking with anybody.Looking for support and to be supportive.
deleted_user
deleted_user

I am sick spasmodic torticollis.ill since childhoit .I now 26 years old.I have a daughter,it is a healthyod.however,I learned that it is inherited.therefore seriously,many wept.I expect it to the disease do not.I am Lithuanian,I want to make a lot of associates, with this disease.but had difficulty communicating in English :(
deleted_user
deleted_user

thank you nonibaby and pamomoftwo for your replies..i will pass them on to my friend and see if she would like to talk with you..i know that she is feeling pretty isolated because most bulletin boards are pretty adults dealing with their dystonia so just to know that there are other mom's out there dealing with what she is will be a comfort..

i have been dealing with a "mini-meltdown" so haven't been able get on here and get to know everyone..hopefully when things settle down i get back on my computer..

thanks again for your relies!!
karen
deleted_user
deleted_user

I have a 10 year old daughter with dystonia.
She takes Artane, 10 mr a day and has shown amazing progress.
she used to to wear AFOs, have difficulty walking, could not stand still, etc.
Today, she looks great.
deleted_user
deleted_user

BTBKR..my 5 year old has dystonia and also is on Artane.When was your daughter diagnosed? Ashley takes 27 ml of Artane a day.We usually end up increasing it every 3 or 4 months.It helps her alot,however,she limps alot at times.The doctors tried Clonopin on her,however,it made her symptoms much worse.Her tremors make her fine motor skills pretty bad.She received PT and OT in preschool and is now in kindergarten and is going to be receiving them again.
deleted_user
deleted_user

Hi
My son has early onset primary generalised dystonia. He does not have stiffness or spasms, but is just very 'wobbly' and drools excesively. I've been told it will probably get worse. He cannot stand still, drags his feet etc. But he can do everything else a normal child can do...he can run and jump and talk and eat and swallow. He's just not as steady as other kids.

Anybody else have the same kind of story?

Niki