My son's endo. is one of the few doctors who routinely treats CAH patients with Dexamethasone. I know that Dex. conjures up the dreaded word "oversuppression" for most people, other doctors included; however, my son has always been extremely well controlled on the dex.---neither under nor oversuppressed---and only had problems when he was switched to the Cortef pill. Our experience is probably a bit dissimilar to those of most other CAH families and I wonder if there are any others like us out there? In reading through the messages on this Board, I am struck by the constant worries CAH parents have and the conflicting information we are fed by different doctors, everything ranging from what are considered acceptable levels; when to take draws; whether to take draws before or after medication; whether two or three pills a day is better; whether the biggest dose should be given in the AM or the PM; whether low cortisol causes mood swings and headaches; and on and on and on. I have been there too--- worried constantly, obsessed with getting information, figuring out who and what to believe, up at all hours of the night because I'm unable to sleep, etc., etc., etc., and not that long ago, either. These were huge issues when my son was on the cortef pill, but, believe it or not, I hardly have to think about them now that he is back on the dexamethasone. My son was diagnosed only in December and started immediately on dexamethasone. At the time, we were, of course, clueless about CAH and its treatment. Our endo was extremely upfront with us, and told us that while the standard treatment for CAH was with hydrocortisone, a short-acting medication, he preferred dexamethasone, and had been routinely treating CAH patients successfully with dex. for close to 20 years. He then gave us a copy of a paper he had co-authored on the use of dex. for treatment of CAH, which we read and found very convincing, though, of course, we had nothing to compare it to at the time. Nevertheless, our son did very well on the dex. and after we finally accepted the news of his CAH, life went back to normal. I even wrote a note to a friend at the time, marvelling that, in spite having this looming, life-threatening condition, my son was exactly the same as he'd always been---looked the same, acted the same, etc.---and nothing was really different about our daily lives except for the once-a-day dropper of dexamethasone. Living with Nick's CAH was, surprisingly, not as big of a problem as we had anticipated, once we got used to the idea. All that changed, however, when we switched doctors and medicine. I'm sure you are all wondering why we switched when all was well. It was because as a male, and a non-saltwaster, my son was diagnosed late and had a poor adult height prediction. When we got wind that a world famous endo (who shall remain nameless) was conducting a Growth Hormone study on CAH patients, we decided that it was our son's only chance of making up for lost time, and sadly bid farewell to our original, much trusted and respected, doctor. We had started off, purely by luck of the draw, with a doctor we loved, but figured we'd end up with someone even better. We also knew, of course, that the new doctor would take Nick off of the dex., and put him on hydrocortisone, since that was the standard treatment, but we felt confident that he would do well on this medicine, as well. Needless to say, that was not at all the case. After peacefully co-existing with CAH for three months, things went sharply downhill. My son's behavior became extremely uncontrollable and erratic; he started developing headaches and neckaches; and his body odor, which had gone away in time, after being on the dex., eventually came back. His levels all also went up, though we were reassured by this new doctor that his numbers were good and he was being well-controlled. I chalked up our problems to the probability that my son was experiencing a delayed psychological response to the CAH, his new doctors, and medication routine. Life went on uneasily, and I found myself, like most on this Board, obsessed again with all the CAH issues mentioned above, trying to figure out what information was right, what was wrong, who to believe, etc., etc. The worry and insomnia that came when Nick was first diagnosed, came back in full force. I know that this is already an extremely long post, but to make a long story just slightly less long, we eventually had a falling out with the new doctor and returned our son to his original doctor and the dexamethasone. That was only two months ago, but since switching back, life has again returned to normal. Because of the long-acting nature of dexamethasone, the worries I had when Nick was on the Hydrocortisone (how many pills, when to take, low cortisol in the afternoon, etc., etc.) are no longer big issues. We were warned by the second doctor that our son would be oversuppressed if he went back on the dexamethasone. In fact, his levels on the dex. have always been perfect, and he has never exhibited any Cushingnoid symptoms, or any other adverse symptoms, for that matter, while on this medicine. It is also extremely easy to use and remember---once in the morning, that's it. No fuss, no muss. I believe that most endos buy into the idea of dex. causing oversuppression because they do not know how to properly dose it. Though our second endo is a renowned CAH expert, we discovered the hard way that even she did not know the right conversion factor to translate doseages of dex to doseages of HC! If she were the one giving the dex and we had had to rely on her number, our son would certainly have been overtreated, as she had warned us, because the difference in doseaging would have varied by 2-1. (I did not understand, at first, how a conversion factor could be perceived as different from one doctor to the next. For me, it was like one person saying there were 12 inches to a foot, and someone else saying there were 24! In fact, it is because you're supposed to use one conversion number when using dex to treat inflammation, and a different one when it is used for hormone replacement, as with CAH. Most endos. apparently don't know this. No wonder they believe that dex. causes oversuppression!) In conclusion, I also want to say that our endo is also an incredibly special doctor. He is probably the smartest doctor I have ever met, in addition to being the kindest and most caring. Though he does things differently from most other endos, he has never been one to say that his way is the right way, and everyone else is wrong. In fact, he has always been extremely open-minded and never bad-mouthes another physician even if he disagrees with their methods. In an unguarded moment, he did admit that his paper was not very well received by other doctors when it was published, and that most other physicians seem content with doing things the same old way, even if there are problems. He also has impeccable credentials---did his fellowhip and training in pediatric endocrinology at Harvard Medical School, and was recently offered, but turned down (!) the position of Head of Pediatric Endocrinology at 3 different children's hospitals. He is also a doctor who told us, when he first diagnosed our son, that the more parents understood about CAH the better, because it usually made treatment much easier; offered to meet with us on Christmas Eve Day to answer our questions, when our son was first diagnosed (then sat with us for TWO hours); and always returns phone calls and messages promptly. Over time, I have also found that his answers to my questions are always right. As a CAH parent, I understand so well the worries and heartaches that we all go through. The bottom line is that our endo has been a godsend, and dexamethasone has worked wonders for us, with none of the attendant worries of using hydrocortisone. I am wondering if we are just lucky or what!