Hi Jen You need to get her to a Peds Endo as soon as possible. It sounds liek she is in arenal crisis right now!!!!!!!!!!She might die if you dont do something NOW!!!!!!!! I know who you can contact and that is kelly at the cars web site!! Her email address is kelly@caresfoundation.org I know that she can help you find a peds endo now!! I can also give you my son’s endo but we live in Indiana. We see doctor Pamela Thomas. She is so nice. I wish you the best and you need to get her help now!!!!! Email me if you would like jmkumfer@aol.com I will keep you in my prayers that you will find someone soon GOD BLESS