Hello everyone... I was given your link, by Anne (We met on Aspen's addison's forum) and hoped to jump in from time to time here; if no one minds. My 6 year old daughter Samantha, does NOT have CAH, but I believe her symptoms would be very similar to your children's, as she has adrenal insufficiency due to an ADRENOCORTICAL CARCINOMA that was found, and removed, when she was 2 years old. Her left adrenal was removed at that time, and we have just recently learned that her right is now suppressed, due to the 10mg/day of hydrocoritsone she's been on since her surgery. They kept her on the steroids, because of a THEORY, that it is ACTH that triggered the tumor growth to begin with... so to SUPPRESS it's release, will hopefully also supress recurrent tumor. I honestly don't know if I agree with this theory, though there seems to be some merit to it... the risk of a lifetime of adrenal insufficiency, seems like a poor trade off! We do have concerns of adrenal crisis, like your children, and Samantha has recently been diagnosed with Asthma as well, which apparently can trigger a crisis quite quickly. I hope to glean any new info from you, that may pertain to Samantha's health as well... but also, to form friendships, with other mum's and dad's, who are in this leaky boat with us! We live in Toronto Canada, and would LOVE to hear how other Canadian's may have been treated... our little rug rat is treated out of Toronto Sick Kid's hospital; and while we know we have very CARING doctors... we also, have not been sufficiently informed, as to how best to protect Samantha from crisis. It's as though they barely considered it a risk! (Despite her having been treated SEVERAL times for it.) Thanks for letting me 'sit in' on your discussions, and I look forward to meeting you, and sharing our HOPE for our children! Janine , Mom to Samantha,6... Rachel,9... and Paul,11... as well as wife, to lucky Sam! (My favorite Italian! 14 years now)