From what I understand, their levels aren’t quite high eneogh to spark suspision. At birth they can have normal levels. Then later on the levels change. My daughter had 2 of the tests performed. One at birth and the second at 2 weeks. Although she only has a 2 year bone advancement none of her doctors ever recommended I have her tested, even though they knew I have it. I did not know that at time that I could pass it to her. I’m sure you have been reading and know that parents have to at least carriers for the child to inherit this condition.

  My daughter is 10 and when I became aware that this is inherited I had her tested. I hope that you have an endo that knows more than your ped. How can she possibly claim the title of growth expert and not know about CAH. Thats is ridiculious. 

  Well the grandparents will have to know sooner or later. They should be showing you how to give her a Cortef shot in case of an emergency. It may frighten them, but if they are her caregivers at times then they will have to know what to do. The best thing to do is print out all the info you can on how CAH happens. Once people understand it is simply a cortisol deficiency it doesn’t sound so scary. Then from that you can explain how the pubic   hair developed. It won’t be easy, you just have to educate yourself about what is happening to your daughter, then it won’t seem so overwhelming when you have to explain it to anyone.  Hope things, get better. Fell free to write anytime, Michelle