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re: re: re: re: re: re: re: re: re: Are illnesses harder to get over with NCAH? Aug. 16th, 2007 4:24pm
Terri,
When my youngest son was 7 his bone age was already advanced by about 2 years. Your lucky that your daughter's bone age is within normal limits. I think my son's 17 OHP was around 500 which is lower than your daughter's but his bone age was still advanced. It just goes to show you, it's different for everyone. I would keep a close eye on her bone age to make sure it doesn't start advancing. My son is now also getting Lupron injections because he was starting to go into puberty. I do know for a fact that both my boy's growth has slowed way down since they started on Cortef. That's something to think about.
At NIH they had a bone age x-rays, testicular ultrasounds, echo cardiograms, EKGs, some cognitive testing and bloodwork. They did fine with everything except they had to have I.V.'s placed to do the ACTH stim test and my older some got really freaked out. It wasn't that it hurt, it's just that unfortunately he has a horrible fear of needles. It was important for them to have it done though because we needed to find out if they produce normal amounts of cortisol. My older son doesn't but my younger son does. They said my younger son will probably be able to stop taking Cortef when he is done growing.
My husband and I both thought we were just carriers. We found out that I actually have CAH and my husband is just a carrier. They told us that they are now doing genetic testing on both the kids and the parents. I would think that they would do it for you also. Overall, it was a wonderful experience because you really feel like you are in good hands and getting the best care available. I would highly recommend going if you can.
