Carla,

It might help you to have a look at the "Emergency letter" we prepared for our daughter - it is online at :

http://www.rap.ucar.edu/~oien/elsaLetter2.html

It seems odd to me that your endo is not forthcoming with information. I’d suggest at minimum getting a second opinion from someone else, preferably not at the same institution. I’m not pointing fingers here (believe it or not), I just think that CAH is so poorly understood in general that it’s generally worth checking it out very throughly.

Also do try to get a copy of "Congenital Adrenal Hyperplasia : A Parent’s Guide" - it is a recent publication and a very good one I think.

I live in Colorado by the way - for any questions, email me at oien[at]ucar.edu (I spell my email in that funny way since it means I get less "spam" email from systems that automatically collect email addresses from web sites).