I have been making calls and doing all sorts of searches to find docs who will be more effective in helping Jessie. She just keeps getting worse and our neuro has just decided it is not his problem. He DID finally get his act together and tell someone to do the referral to the pain clinic. A MONTH after our appointment when I called to follow up and see why we hadn't heard from them. Jessie sees the pain doctor on Tuesday. THIS Tuesday!!!!!!!! I am just hoping we don't have to go to the ER before that with out of control pain. It is approaching that level. I also am getting our pediatrician to do the referral paperwork to have Jessica seen by another neuro - one who is active on the dystonia society boards as a doctor treating kids with them. It will be a couple of weeks before I know on tthat one. I will let you know how the doctor appointment goes.