Tamara - I am by no means an expert - I am a newcomer myself. My son (6) was just diagnosed in NOv. and we are also waiting on a definitive answer on my daughter (5) who has some symptoms and is at minimum a carrier.
Anyhow, I found the CARES website very helpful (www.caresfoundation.com) and just reading through a bunch of these postings.
It is scary - but the more info you have the better you will feel.
Right now, they will be concerned with getting your children diagnosed to know what type of CAH (classic - salt-waster most severe of the classic, simple virilizing, or non-classic) and then get them on meds accordingly.
A big concern for your son is the degree to which his bone-age has progressed already. (Our ped. told us that you want it within 1-2 yrs of their chronological age). If they don't address this ASAP, his bone platelets will close very prematurely and then they stop growing. The irony is that you have a really big kid and then they end up as short adults.
Feel free to ask any specific questions you have on this website - people here are great and so willing to share their stories, advice and support. All of which are essential to us as parents of our special kids!
