Your doctor should contact Professor Hindmarsh, he has helped other doctors in the US with getting the pump. It sounds as if your daughter has a similar problem to me, and Prof Hindmarsh will tell your doc what tests to do. I had loads of tests to check all sorts of things, he is a very clever man and is very knowledgeable about CAH
I am really sorry for your daughter as I understand how she feels, I really hope she is able to try the pump as it has changed my life.
It is best to go to Prof Hindmarsh as there has been studies done on the pump which were not where as good as my results but Prof Hindmarsh's method of working it all out and programming it is so different. My levels came from being unable to be suppressed to exactly what we wanted them within 24 hours.
If you let me know your e-mail address I can get my mum to contact you and she can send you some of my data.
Good luck
Chris
