16 year old daughter with PSC

[Guest guest]

I have a 16 year old daughter that has just been diagnosed with PSC.

She has had high liver counts since she was 5 years old, however it

has taken 11 years for her doctor to finally give us an answer as to

why. We are now working with the Transplant team at UCSF, we attended

an evaulation on Thursday and were very impressed with their team. Her

bilirubin was at 38 2 weeks ago prior to her second ERCP in three

weeks, the bili. level dropped to 23.8 but has now climbed bak up to

28.5 she has been on ursodiol for approximatily 3 weeks and complaines

of nausea and has not been eating well. The urso seemed to have no

effect on lowering the bili level, so she has stopped and now has her

appetite back.(sorry if I'm rambling here but am still trying to

digest all this) Anyway what Im relly looking for is other young

adults she can chat with to help ease her mind until we beat this

disease. If you know of any chat rooms or fourms please let me know.