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re: Had Dr appt yesterday, have more ?'s today Apr. 15th, 2008 8:26am
It never hurts to be persistant. People can suffer from two diseases at a time. If they refuse to do the tests you want, keep going until you find someone who will. Make sure you are going to a pediatric endo who deals with CAH on a daily basis. I myself fly my children from Alaska to Oregon.
Larger medical centers are good because they can refer you to other physicians in house and have all of the medical records at their fingertips. Consider being referred to a pediatric gastroenterologist. Just because she has CAH doesn't mean she can't see other docs. Also, I think that there was someone on the board a while ago whose child was misdiagnosed for over 7 years. If you are questioning the diagnosis, trust your gut and find someone to listen to you. It is possible that if your doc doesnt see or treat CAH on a regular basis that he really doesn't know what he is doing.
With her lack of growth, have they checked her pituitary? With Pituitary problems, you can have cortisol, thyroid and human growth hormone issues.
