Anne-MarieAs many know our CAH kids have steroids to "replace" what they don’t make..
The way Doctors have us dose our kids is exactly the way we would want to dose them if they were sick. (Every 6-8 hours bang on and all the same doses exactly---very primative where it comes to cortisol replacement for a CAH child that makes none). Most people that make cortisol normally but need steroids from time to time due to infection or inflammation would no doubt need their steroid dosed like that as they are ill and in a state whereby cortisol would be made like that anyway. Just not enough of it. When ill the body raises the anti and the adrenals make cortisol in steady amounts and the levels are up and stay that way until the emergency is over---come night or day time. So it’s fine that people who only take such fleetingly for a week or two or a few months get their steroid like that. They don’t get it for life. They arn’t therefore going to be getting side=effects for too long either.
However, for our children on a normal day to day level, they ned to be dosed as a normal person makes this stuff. They only need cortisol where it would normally be made as reflected by the chart on the Mayo site and within this thread. So why should we dose them any differently to that? The only reason that Doctor’s have us dose the conventional way I feel is convenience. The fact that also we could possibly miss that dose at 3am. if you knew that they were the only two reasons as to why your Doctor had you dose like that and that side-effects therefore apply in the place where you give large amounts and they are not needed, I am sure a great many parents would choose not to give their child the late 10pm doses. That and also, there would be more done in the way of what alternative they can produce for us at the manufacturers in order that we do not rise at 3am.
When our children are born we think nothing of the fact that they wake us any odd hour of the night. We never know when they will want to be fed. It may sound difficult to dose and rise at 3am, but it is a certain time every night and so it gives you the impetus to change your routine around the time. Unlike a newborn baby that is totally unpredictable. If anyone said to you, "Oh this baby will definately wake you at 3am for a feed every single night for 6 months" I am sure that many of us would have thought, "Hmmm, thats not so bad--I can live with that." That’s because it is the unpredictability of babies waking any time they like that drives us nuts and stops us being able to devise a routine.
Eventually you get used to it. It is like working nights. When you hav done it for a while, it seems normal.