Hi I posted on children's health but had no replies in a week.
Posting here hoping someone sees it
Ds has just had genetic tests looking for this condition to explain his difficulties.
He has had various MRI over the years (clear), always struggled with balance, conordination and muscles but it seems to have got slowly worse over the past 6 years.
He takes 60mg of baclofen a day which controls his pain.
Just looking for anyone who has a child with this and a chat really as we wait for the results.