I’ve read several posts about children with CAH dying from getting sick, like from the flu.  I have a 6 months old girl with SWCAH and concerned because I feel like I do not know enough about her disorder.  How common is it for someone with CAH to do related to the disorder?  How do I know if my daughter is having a crisis if she’s too young to tell me?  What signs do I need to look for?  In the cases where children have died, was there anything that could have prevented it?  I really need to know to put my mind at ease.  When I first read a post about a 12 year old girl dying when she got the flu, I got really upset because I didn’t realize that this was a life threatening disorder.  How can I prevent that from happening to my little girl?

Also, I’ve been reading about girls, especially at puberty, feeling like they are "different".  What do they mean by that?  What kinds of things are they not able to do that other children are?  One post said that their daughter felt like a boy.  That concerned me.  Do many girls with CAH feel like they are boys due to this disorder? 

Please help me out.  I’m a first time mom trying to educate myself but I don’t want CAH to control our family.  I just want to have some knowledge about it.  Thanks