We just returned from my son's endo appt. He is STILL showing as oversuppressed. His 17 OHP is <5, ACTH <5 and Renin <20. We are reducing his Cortef tablets, yet one more time. He will be on only 5 mg/day. He is 35 inches tall and 35 pounds. The 5 mg/day will put him at 7.86 mg/m2 per day. Here is his history. He is 27 months old. He was under good control for the first year +. Then undersuppresed for a few months, and then oversuppressed for about 4 months while on liquid Cortef. In the spring we switched him to Cortef pills. Since the switch to pills we have reduced his dose from a high of 11 mg/day, to his current dose of 5 mg/day. He has had bloodwork done every 6-8 weeks after a reduction. The labs continue to show oversuppression. He is also showing some clinical signs of oversuppression (e.g. slightly round face, slight hump on back of neck, and weight gain). Although, the signs of oversuppression have lessened dramatically. His growth has been good (e.g. in the last 2 months he grew almost 1 inch and is staying around the 50% line for height.) He had a bone age done in June and it showed him at appx. 2 years old; his chronological age was 2. Now for my questions . . . Has anyone known of another child like this? Anyone on such a low dose of hydrocortisone? Anyone heard of any condition that could cause a reaction like this? Any tests you can think of to run? Anyone seen blood levels not reflect a change in meds until more than 2 months pass? Any web sites you know where I could get info? (I admit I have a list of about 50 sites to look through yet) I really don't want to get a second opinion because we have already switched endos once and due to insurance we are dealing with a very small pool of dr.s. I have no reason to doubt the expertise of his current endo, but I am just terrified that we are missing something. It seems SO UNUSUAL for his dose to be this low. However, he has been extremely healthy, he is growing well, and his bone age seems to be fine. We double and triple checked his Cortef to make sure it was the right prescription. I even brought in his prescriptions to his appt for his dr. to look at. His dr. has ordered his androstendione to be tested just so see if that shows any unusual. I also think the labs did a double check on themselves this last time. We rec'd results on ACTH and renin from the local hospital like usual, but then we also rec'd ACTH and renin results from Endocrine Science Lab in Ca. along with the 17OHP. His endo admits his dose is quite low, but she believes he may just have a very mild enzyme defiency. I want to believe this, but am just terrified that we are missing something. Sorry for the long message!! ANY IDEAS?