You raise a very valid point for those not DNA tested. How do we really know if our children have CAH? However, if your son has had his blood tested, including the ACTH stimulation test, these results should accurately diagnose CAH. We have not had genetic testing. It did not seem necessary to put our daughters through these blood tests. Our older non-cah daughter may choose to be tested later in life, though we believe she is a carrier. You are very brave! I will pray for you! I could not stop my daughter's meds for anything short of a cure. My daughter was diagnosed at 6 weeks of age. She had slightly ambiguous genitalia that passed for newborn swelling. Our pediatrician reccommended that we see an endo only when the "swelling" did not go away. She was never ill, nor did she have a crisis. She has been on meds ever since. But I don't doubt she has CAH and I would not want to risk the experience of a crisis that she does not return from. Of the 6 injections she's had in her 4 year old life, half of the episodes were true crisis and I was very afraid each time. Maybe you could repeat the test, maybe even later in life. I wish you and your son the best, it's a tough decision to make.