Great thread going here, Chris D. and Laura K.! Just can't resist butting in a little bit, since growth/dosing is one of my favorite topics to do with CAH, also one that continues to fascinate, perplex, and frustrate me, to no end. Some more thoughts, observations, questions....in no particular order.
Chris, I don't think your idea about inadvertently "stomping" on Jack's adrenals, when he was much younger, is really so crazy. Funny, but I've had the same thought about Nick, but in reverse. Last summer, I could see that he was starting a gradual slide towards undersuppression. It was subtle, at first, but then picked up speed real fast. The funny thing was, I could actually pinpoint the moment when the dam seemed to break.....it was right after he had contracted pneumonia. Of course, I stress dosed him during his illness, but I often wondered if the pneumonia was what caused the momentum in him to shift. At any rate, it was so curious to me that I could tie a palpable change in Nick's system to a specific event.
I think that Laura brings up a good point about having a bit more "wiggle" room with Claire, because of her delayed bone age. With Nick, our recent reductions (6 since January) have been made with much more caution, since his bone age is advanced by 5 years so, in effect, we have no wiggle room. Even though it's taken a bit longer than I would have liked to lose physical symptoms of oversuppression---and growth has slowed down noticeably during this time---I do feel confident that "slow and steady" is the right approach, in our situation. And it seems to have paid off, with steady numbers, despite a cumulative 41% reduction in medication dose. So, now, Nick is actually under extremely tight control, but on the lowest relative dose of steroids that he's ever been on.
It's becoming more and more my feeling that you can't always go "by the book" when you treat CAH, and that one of the hallmarks of a good endocrinologist is someone who understands when to have a light touch, and when to be heavy handed. Also, the same approach may not work in every situation, even with the same child, so I think a good doctor is also someone who understands when to change his/her own tempo, to fit the situation. With us, I am happy to say that I've understood and agreed with just about every decision our doctor has made: We have had very subtle dose increases, and we have stomped. We have had tests done after med. changes, anywhere from 10 days afterwards, to 3 months. Sometimes our dose reductions have been made, no questions asked---based purely on my observations---and even before test results are back; other times, we've adopted more of a "wait and see" attitude, before making the cut......I'm a big believer in the idea that you can't be a slave to "numbers" or dogma, when dealing with CAH---the disorder, and its treatment, seems to break too many rules---and a good doctor is someone who knows how to look at the situation wholistically, instead of each event in microcosm.
Re. reductions in med levels: I read an abstract once, implying that children sometimes need less medication, as they get older. Apparently this is true....my son's endo just confirmed, recently, that kids, who have been in good control for extended periods, often end up with lower medication requirements, over time.
Given that both under- and over-suppression can have detrimental effects on adult height, I've often wondered which, in the long run, is worse. I'm not talking about the extreme situations, but the issue of whether it's better to aim for the higher or lower end of "normal," when talking about our kids' levels. I did a search on this subject a while ago on the Pub-Med site. Out of the searches that I was able to turn up, the majority seemed to associate short stature in CAH with under-suppression, and premature skeletal maturation, rather than excessive glucocorticoid use. At the same time, I've found studies that indicate that slow growth, prior to the age of two, seems to have a long-term detrimental effect on height, as it is often difficult to catch up, later on. In that way, kids, who are treated from birth, can be at somewhat of a disadvantage because of the danger of glucocorticoid excess, during this crucial period. The situation, I guess, is similar, but opposite, to the problems of kids who are diagnosed late, and have the problem with advanced bone age.
My newest idea----get this!!!---is that the doctors have had it wrong all along. Up till now, short-acting meds have been preferred during the growing years because of the fear of oversuppression; and long-acting meds have been deemed okay, once growth is no longer an issue. I've been toying with the thought that maybe that is backwards: During the growing years, everything is a moving target---the child is changing physically; there is the day-night circadian rhythm issue to contend with; AND you have a medication (HC) that is being constantly eliminated from the child's system. Egad!! How the h*** is anyone supposed to achieve consistent good control under those circumstances???? Isn't it better to have at least one thing constant, so that you can, at least, tell what you're doing?? And, in a way, the long-acting meds allow you to do that, by keeping suppression extremely consistent. Of course, you need to have a doctor well versed in their use.
By the same token, WHY use a long-acting med. after growth is no longer an issue? In a way, you don't care anymore whether or not you break out of control, here and there, once you are an adult---it's not going to do much harm. And since glucocorticoids DO have negative side effects that would be nice to avoid---bone loss, for example---doesn't it make sense to take as little meds as you need, then, in order to do that? So, in a way, it almost makes more sense to me to use HC---which gives you a little break during the day---once you are an ADULT!!
So.....how's that for radical???? I'm sure I won't be moving mountains in the medical community anytime soon with that one....but it is kinda interesting to contemplate. Next month, I'll probably feel completely differently, but for now, I'll leave you with these thoughts.....(so nice to be able to vocalize my crazy ideas to people who are likewise obsessed with this issue) !!!!