Yes it is really hard when you are suddenly faced with having a child with CAH, and you do feel alone as it isn't as if it is something that you really want to tell everyone because it is private but at the same time you want to share your feelings with people who understand. It is a shame that your specialist did not put you in touch with the UK CAH Support group
http://www.cah.org.uk/ as they could have put you in touch with other parents. I appreciate what you are saying about your daughter not liking the blood tests, my son used to scream before the needle even touched him, but they get so used to having them that when they are older they do not mind. It does get easier as they get older as they can tell you what is wrong. School will be just like nursery and your daughter will make lots of friends and you can choose who you want to tell about her condition, even then they need not know everything, only that her adrenal glands do not make what they should. The support group also does a pack for schools, ID cards and has conferences where you can meet many parents. There is also an excellent book which makes CAH so easy to understand, you can order on line, it is called Congenital Adrenal Hyperplasia, A Parents Guide, by CYHsu and Dr Scott Rivkees.
