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Jo+3 · #1 10-16-2009, 10:04 AM

Hi my son has just been diagnosed with Dystonia. He will be 3 in December. He hasn't been given medication yet as they're doing some other tests. Just wondering if anyone has children with dystonia or knows anyone who has it.
Jo x

caseslot · #2 10-24-2009, 01:56 PM

Hi, i have just been told that my son may have cervical dystonia as well as a host of undiagnosed problems.

Jo+3 · #3 10-24-2009, 10:16 PM

(10-24-2009 01:56 PM)caseslot Wrote: Hi, i have just been told that my son may have cervical dystonia as well as a host of undiagnosed problems.

Hi, how old is your son. I don't Know much about cervical dystonia. Does it affect the neck muscles? Is there a medication?
Jo x

caseslot · #4 10-25-2009, 01:12 PM

(10-24-2009 10:16 PM)Jo+3 Wrote:
(10-24-2009 01:56 PM)caseslot Wrote: Hi, i have just been told that my son may have cervical dystonia as well as a host of undiagnosed problems.

Hi, how old is your son. I don't Know much about cervical dystonia. Does it affect the neck muscles? Is there a medication?
Jo x

Hi, he is 9, yes it is just the neck muscles, we aren't medicating though as it isn't painful and doesn't really seem to bother him, if he was walking it would be a different matter as it would throw his balance but he is a full time w/chair user so we have just left it for now and we'l see how it goes. I know nothing about dystonia really so have been sat looking on google.
What tests are they doing on your son?

Naomimumof4 · #5 09-18-2010, 05:25 PM

Hi, my son has been to see his nuroligist this week and after 2 years of tests ect he's come back with Dystonia it's not 100% were still waiting for some lumber puncher tests to come back but i don't know what to expect as we've been told this then sent home to research ourselfs...?
His mobility is affected as he tires easly and is very of balance and also his right arm is twisted...?
Any advise would be great x My son is 6.