Looking to see if any have used dex. for long period of time for swcah & how it worked. (June 2002)

As I mentioned to you the other day, when my son was first diagnosed, we had absolutely no idea about the different medications used to treat CAH, so were completely without prejudice about long vs. short acting meds. For us, it was the opposite situation---we had such a good experience with dex and Dr. Rivkees, that we were quite insecure when we made a switch to hydrocortisone.

As I also mentioned to you, Nick was treated for the first three months on dex, and had absolutely no ill side effects, at all. Once we got over the shock of getting the CAH diagnosis, we found no discernable differences in his behavior, appearance, habits, etc....he was exactly the same child he had always been, except for the fact that he now had to take medication every morning.

I have to admit that it is not always easy to read the terrible things that people say about dex, and not feel, sometimes, just a teensy bit insecure. For that reason, perhaps, I have made it a special point to read, for myself, the medical articles that are footnoted, when it is stated that dex is to be avoided in children.

Quite honestly, I often read these papers with fear and trepidation, certain that each is going to be the one that delivers the bad news. I’ve now looked at a good number of articles, and, so far, no smoking gun...phew!! In just about every single case, the amounts of dexamethasone used were quite large----is it any big surprise that people would develop signs of overtreatment on those doses? Geez...if you regularly gave someone 100+ mgs. of hydrocortisone, they would probably develop cushingnoid symptoms, as well!

I thought you might also be interested to know that I’ve recently taken another very close look at my son’s entire history of growth. Admittedly, I am a bit of a fanatic---I’ve got everything plugged into an Excel spreadsheet, so that it’s easier to spot trends. I wanted to see if there were any differences in how he grew on hc vs. dex (though he was only on hc for three months.) And I also wanted to see if there were any differences in how he grew, when he was on a combination of dex/lupron/growth hormone vs. statistics published by Dr. New about patients of hers, also on lupron and growth hormone, except being treated with hydrocortisone. In other words, given kids who were otherwise in the same boat, and taking the same medications, did the use of dex prove to have a negative impact on growth, when used instead of hydrocortisone?

Well, what I found was that---after being put on lupron and growth hormone---Nick grew at exactly the same rate, whether he was on hc or dex. The different glucocorticoid seemed to make no difference, at all. And, compared to the children in Dr. New’s study, who were treated with HC, he also did quite well, if not better.

There were 8 children in a recent study she published, on the same combination of hc/lupron/growth hormone. Nick’s numbers were better than 4 of the children, and not quite as good as the other 4. At the same time, however, his bone age did not advance, while making these gains in height, whereas some of these childen did see some bone age advancement. Compared to the 4 children who also did not have any bone age advancement, his growth---while being treated mostly with dex---was actually better than 3!

I read these message boards, in large part, because of the anecdotal evidence that people offer up----one can learn so much! I have run across very few people in the last 2 1/2 years, who are being treated with the liquid dex, so I’m afraid you’re probably not going to get a huge response to your post. There are often folks who come on, with major side effects while on dex...but, in almost every instance, it seems the problems can be readily attributed to problems with dose sizes, equivalencies, inability to titrate doses closely due to use of the dex pill instead of liquid, etc.

My feeling is that it is just as possible to have problems---or success---no matter which glucocorticoid one is on. So much depends on the doctor delivering the treatment---as with anything, a tool is only as good as the person wielding it. As I mentioned earlier, Dr. Rivkees is terrific. He may not have a crystal ball into the future, but I can assure you that he will take great care of your son. He is a great combination of intellect and heart....I don’t think I could stand to have anyone else treating Nicholas.