Dear Donna,

I read your first post Adults with CAH and also this one. Maybe http://www,caresfoundation.org could help your daughter somehow.  I wonder waht happened at age 15 to make her give up? or I also wonder if she stated like you wrote the cortisone she was on made her feel bad then there are options of say for example hydrocortisone instead of pred or maybe even Dex. I took pred for 33 years and there is a difference to me taking hydrocortisone now or maybe at the time she was taking to much cortiosne or to little or maybe just didn’t feel well at the time and attributed it to the CAH replacement dose. 

I did stop taking the prednisone for awhile after the surgeon checked what he did to me. I thought at 11 years old that if I stopped taking the pred then I’ll also stop having to deal with the exams that were done to me. See it was easy to slide away like your daughter but as someone with Simple - Virilizing CAH became sick after awhile but I do remember the quiet and being introverted - i liked it and was in my own little world/ I was a quiet kid already and not taking the pred made it much more. It was by not taking the pred then i was able to block everything out abotu CAH and this worked for awhile until I got the flu but had no pred to help me. The endo and his posse didn’t even question why I had slipped away becasue they were able to study a clear pathway and found that I actually had a rarer form of CAH- like I cared.

I can relate because  like your daughter could spend hours in my room and was happy to sit and draw.   I don’t have the answers but from reading about othre people with CAH and talking to some - it does seem that some of us are more effected by the cortisone/ CAH than others and this is if the CAH is the issue here for the last five years. If she likes to be on the computer all night then there are plenty jobs out there to do that. i am a quiet person with a sense of humor and happy at a job with minimal people around. Where does she see herself in five years? I don’t have the answers and could never suggest anything but I do know the feeling of Nope not taking the cortisone i feel fine and what will happen will happen. Heck, I  even played around with the synthroid that i take just because.

Chronic medical condition at times can overwhelm and is hard to deal that I have this Sooo I’m going retreat to my room. I really didn’t retreast as much to my room but rather feel inside a beer bottle for a couple of years and when I sobered up The CAH and everything that was done for it was still there.

Maybe the people at your local hospital can help? where they can do a full medical work up. Everyone has something wrong...even the doctors. A doctor that i like enough to yell around actually has a condition and connected with me in three seconds flat. I wouldn’t ever tell him that becasue then the fun is gone but maybe somehow .......a nurse, a doctor, the lady at the desk can reach her ( a the one hospital - there is this lady that sits atthe desk that just gives me a look and a firm forward thinking attitude when I’m very far away in my mind whereas the nurse would try over and over and i thought the woman was an aliean. She always wanted me to be happy happy happy and guess what maybe some of us in the world aren’t like that 24/7   but that’s Ok too.

Does your daughter ever mention wanting to do some sort of job?

Good Luck.

I don’t post that much anymore but I know how hard a condition this is at times.