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I'll try to answer your question without making my answer too lengthy. My oldest son, who is 14 years old and has NCAH was diagnosed at around 9 years old because he had started puberty. At the time his bone age was 12 1/2 to 13 years. We started him on cortef and lupron. He got the lupron injections until he was 12 and then our insurance stopped paying for them. During the course of his treatment his bone age did slow down but never caught up with his chronological age. Unfortunately, during that time period he was growing very slowly (only about an inch and a half a year). Looking back at his labs (and pictures of him during that time period with a puffy face) I realize now that he was oversurpressed. I asked his endo about growth hormones and he pretty much did not even want to discuss them with me. I think one of the reasons was because he didn't even know that they were being used on kids with cah. We put my son on letrozole about 2 years ago to try and slow his bone age down. I'm really not sure that it worked that well. At his last appt. (in August) the doctor told us his bone age is now 16 years and that he is probably done growing.
My younger son (who was 6 years old at the time and is now 11) was diagnosed right after his brother and put on cortef also. He was oversurpressed too and his growth slowed way down. Then a year and a half ago we started him on lupron because he was starting puberty also. After seeing what had happened to my older son I decided to really push my endo for growth hormones. He told me insurance would never pay for them and tried to discourage me. My insurance co. denied us coverage and I appealed their decision 4 times and they finally agree to pay for it. So far things are looking good. My son has grown the same amount that he normally does in a year in a period of 5 months since he has started growth hormones. I'm keeping my fingers crossed for him.
Sorry this ended up being so long. I hope it answered your questions.
