I believe that the ACTH stim test is the only one that is truly definitive in diagnosing CAH. I have heard of some that have had the hormone levels tested and they were only a bit high so that was interpreted as normal when in fact the child had late onsedt CAH. This is happening with my nephew right now and it's very scary. The endo won't do the ACTH test. DUH. Why not? Money unfortunately my sister has an HMO. I'm sorry that your daughter's symptoms were made worse during the test but I am glad that her endo is being thorough. As for our children being on hormones for life: we all are, but our bodies make them for us. Our children are not so fortunate in that respect and need to take the hormones orally. This is a REPLACEMENT of what their bodies are not making but should be. The side effects are not as severe when properly controlled as a person without CAH who is taking these hormones in ADDITION to what their bodies are normally producing. I have heard of some sied effects. One side effect that has been noticed is that calcium is slowly leeched out of their bones causing early osteoporosis. Our doctor feels this does not need to happen and can be prevented with supplements of calcium. We need to be aware of this and give appropriate calcium supplements. Please ask her doctor how much she should take. Some people are very sensitive to the cortef and gain weight when doses are increased. Some believe that long term cortef and florinef can cause lowered immunity and cause wounds to heal more slowly. My daughter is only 16 months so I do not have experience with any of these side effects, these are just the ones that I have heard of. Good luck and keep asking questions and searching the internet!