Since this is a huge and very serious decision I would go to Boston Children's if it were my child. I say this because I've had many opinons in the case of my child (dx UC surgery soon) and they are by far the best. I also know many parents who have had great experiences there and who live in other states but who travel there for care for their children. I know it's a long way to go (I'm in Canada) but if it were me, that's where I'd be headed. Also, you can contact them and see if they would give you an opinion long distance if possible with you sending over all of the required documentation. Good luck to you and your daughter.

I don't have a child, or have ever known a child that is in your situation, but I really like KILLCOLITIS'S recommendation for you. When my brother's brain tumor came back, my parents were in a similar situation. They had been going to Children's Hospital of Philadelphia (CHOP), but after a consult over the phone with Duke, and mailing them all of his records, they agreed to see him and try to do what CHOP wasn't willing to do; which was to treat him despite the odds. I'll certainly pray for your family, and especially your child. I've said more than once that I don't know how a child would deal with this, and I wouldn't want to be the parent of a child dealing with GI issues such as UC. You and your child are an inspiration to me. If you guys can do this, so can I. God Bless!