Hello Cassmom!
Welcome, and so sorry to hear of your daughter's pain!

There are some other Mom's here, and a young lady near your daughter's age, who I'm sure will be here.

You didn't mention any injury that may have caused this with your daughter? Was there one? Any trauma at all?

I suggest this website a lot,
www.rsdsa.org
RSD, (Reflex Sympathetic Dystrophy) is an older name for CRPS.
There is a doctor finder there, and volumes of information.

Personally, I'd highly suggest that you find a neurologist who's familiar with this disorder!
(Try a University hospital setting, and try to get the chief of Neurology).

Also, what you describe, I would have her to a hand specialist (surgeon) to rule out Thoracic Outlet Syndrome (TOS). (Usually, in a hospital setting, the neurologist will have/know a good Hand surgeon.
There's another section on this board for folks with that. I'm one of them,
I've had both RSD/TOS for 26 years now. Younger patients who get treatment early, do the best by far.
http://neurotalk.psychcentral.com/forum24.html

I'm NOT a doctor, just suggestions from my experience.

I wish your daughter, and yourself and family the best!

I'll offer my prayers for your daughter!

Pete

asb