Welcome to Neuro Talk. I am not an expert by any means. Have you taken your daughter to the best neurologist you can? Childrens hospital in St. Louis has a fantastic dept. It use to be run by Dr. Virginia Weldon. I am not sure she is there any longer.
This does sound a bit like some neurological condition. My daughter had some seizures of some kind for the first three years of her life. She was followed by this hospital. She was never really diagnsosed, as her symptoms were unusual also. She grew up OK, and doesn't seem to have any problems now as an adult.
If you can get to one of the best childrens hospitals in the country I would seek this avenue. I am sorry she is having these troubles. I know first hand what it is like to have a child that has medical issues. Take care, and let me know how she does. ginnie