Dystonia Bulletin Board

Thanks for your reply. We started increasing the dose of Artane today (ie. just increasing the morning dose for this week, then will step up the evening dose next week) and he did not respond all that well with the larger dose. Complained of tummy aches and looked a little pale and was quite irritable. Will see what happens tomorrow morning but i don't feel too happy about all this experimentation with medications. But, I guess there is no easy way!

Thanks for your advice re sinemet. My son has (it is thought anyway - we are still waiting on the genetic test to come back) myoclonic dystonia which is one of the ones in kids that is not dopa responsive i think.

I feel like this is going to be a long journey!