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re: re: re: re: re: Are illnesses harder to get over with NCAH? Aug. 14th, 2007 1:24am
Terri,
I felt that I needed to reply to your post due to my situation. I'll try to make it brief.
My 2 boys (ages 10 and 13) were diagnosed 3 and a half years ago with NCAH. My older son was in puberty ( at the age of 9) and his bone age was advanced approx. 3 1/2 years so we put him on cortef and started Lupron injections to stop the puberty. My younger son has also now started puberty and has advanced bone age so he also started getting Lupron injections. Even with them taking cortef and Lupron their chronological age still has not caught up with their bone age. Their estimated final height is still quite a bit shorter than what it should be. I am pretty sure that their growth has been stunted due to the medications. I'm not saying that they shouldn't be on medication, but I just can't help but wonder if we decided not to start them on the steroids that maybe their final height prognosis would be better.
Now here is the interesting part. I just found out today that I also have NCAH. I am 41 years old. I found out because our family participated in the study at NIH and my husband and I both had genetic testing done. Of course I was surprised!! I have always been hairier than average but that is about the only symptom that I've ever exhibited. I have never had problems with infertility, I am average height and have always been very healthy ( knock on wood). Dr. Merke said they don't recommend treating NCAH at my age if there are no symptoms. I will have to have a stim test to check my cortisol levels to make sure I'm not in danger of going into crisis.
I think you are wise to hold off on putting your daughter on medication if your doctors don't think it's necessary. I hope nobody gets upset with me for saying that. Of course every case is individual and it's important for each person to do what's best for them.
