I think the most difficult aspect of this condition is the vast number of ways to treat it. I have been reading this board for almost 2 years now and consistently the posts are about different ways different dr.s treat CAH patients. There really seems to be no standardization. It can be very frustrating and very confusing. Keep up what you are doing - learn all you can, question the dr.s, and search until you find a dr. that can answer your questions and treat your grandson will the care, time, and respect he deserves. My son's dr. does the same as Peg's. She looks at my son's blood levels, then does a clinical assessment. The clinical part includes looking at his height and weight (like Peg I have noticed my son gains too much height when undersuppressed and too much weight when oversuppressed). She also looks at his pigmentation (in places like the folds of his hands). She checks his back, really his lower neck, to see if there is a hump (this is a sign of oversuppression). I observe his appetite and sleep habits. He eats more and sleeps less when he is overmedicated. I am sure I have been a royal pest to his dr. I constantly ask her what she is looking for when she examines him. I also have asked for the ranges given by the labs on the blood tests. I think any good dr. should be willing to help you learn more about your grandson's condition (or your daughter about her son's condition). Especially something like CAH where there is such a variation of treatment and so much is dependent on the people who know, love and care for the CAH child. Good luck and hang in there.