I wish I could offer some advice but I can't. All I can say is that as a parent of a very young sick child I have been through similar. I want to encourage you to do as much research as you possibly can! Dr's don't know everything and you are your child's advocate. If something they are doing doesn't feel right, then step up and say something. Remember that the Dr's work for us! and if they start bullying or treating you like they are in charge...remind them that YOU AS HER PARENT and HER VOICE and the ones in charge. ASK a million and one questions and keep a book to write everything down, such as meds. That helped me during my time in hospital with my little boy. It was such an overwhelming thing to go through and the Dr's would come into the room and tell me a bunch of things but I would never remember because I basically was in a grieving state and my mind was not working properly.

If you have any questions or need to talk please feel free to email me. calidawnm@gmail.com. My son was diagnosed with epilepsy, we still don't know why he is having seizures, but they are life threatening and he will stop breathing...it's heart breaking to say the least. I wish you all the best of luck and pls tell your daughter to stay strong.

I just did a Google search and this came up for you to read http://www.healingwell.com/community...f=32&m=1103424