I saw something on the news---in fact, it's on right now. It's about a young boy with a disease called Dystonia. http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm It reminded me of Jess. The young boys symptoms were eerily similar to what you describe is going on with her. It may be worth looking into. The boy had deep brain stimulation---similar to the procedure they do for Parkinsons and is now playing soccer again.