Anyone with Dystonia ??

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My_angel
My_angel Online Community Member Posts: 18 Listener
Hello everyone
I wonder if on this forum I can find parents with CP - Dystonia children?
My daughter is 3,5 has been recently diagnosed with Dystonia - and until 3 we thought its only erebral Palsy - so its kinda of new chapter in our life, anyone can advise how your children cope with it, any rehabilitation program etc... thank you

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  • maryholmes
    maryholmes Online Community Member Posts: 8 Listener
    Yes my son is 2 and a half has bad dystonia, health staff hardly see him and are rubbish took them ages to figure it out that he had dystonic cp, he has a new medicine called trihexphenidil helps reduce it a bit and it works!
  • maryholmes
    maryholmes Online Community Member Posts: 8 Listener
    My son has trouble sleeping at night any tips?