re: doctor visit
Nov. 3rd, 2002   6:08pm

That was more of a debate than an argument.  :)    Only right too.  Parents need a balance of information anyway to help them make decisions.  Dex did a good job of getting Ashley back into normal control a year and half ago. I could I guess have gone with raising the Hydrocortisone dose three times per day, but it was not our choice.  The Doctor treating was the one to suggest it and after contact with Carol, and her Doctor we decided to give it a try and stay on the stuff--much to Ashley’s Doctor’s disapproval.  At the time I could not see why he would object really.  (hHe worked with Carol’s Doctor at one point in the US).  

However, he felt we must change back to HCT.  At the time I had limited knowlege, and had not really looked into studies and researched for myself as such.  I just had the naive impression that it would mimick cortisol rythyms perfectly by being hgher in the morning and lower in the evenings.   Then came the side-effects, and even when we dropped back too.   It was only when I really started digging around that I decded to go back to HCT for him.  That and then back and forth email with Laura about the Hindmarsh and Brooke abstracts around circadian variation and bio availability of HCT.  

I looked at it this way where dex was concerned:

It was like effectively giving him the whole of his total daily HCT dose (15mg) first thing in the morning on an "healthy" day and expect that that would have absolutely NO effect upon him or causes side-effects for that small peruod it was so high like that.    Except with dex being more potent, it meant it would stay around for much longer causing those side-effects for longer  than 15mg of HCT given at the same time would cause.  At least where HCT is concerned, the bio availability is much shorter and it would peak within an hour and decline in the blood more quickly than an equivalent dex dose.    I discussed that with Ashleys Doctor and he agreed.  

That is not the only extreme that a child is taken to though where dex is concerned.  Giving dex once a day means that at the lower doses it is very low some 16 hours later.  So low that it is no doubt much lower than a typical 10pm dose of HCT given to a child.  Now we ALL know that a typical dose of HCT given at 10pm is just not doing the job it should at around 3-4am in the momrning.  So I asked the question, " What is the dex dose given at 7am doing for him at 10pm and onwards anyway???  There goes the other extreme for you.   Higher levels than normal of 17 OHP between 10pm and 7am in the morning or the next dose of dex.   It was only when I learned about circadian variation through back and forth email with Laura and reading those abstracts that I had these new ideas about how dex is not really appropriate for kids.   

 The other issue is that  bone density for children on more potent steroids during the day like this.  I don’t think any Doctors have looked at that with the newer potencies.  I asked the one that did specialise and he said he had not looked at that.  yet it is commonly known that higher potencies are associated with bone density loss.   I don’t know that it would be any different in those that take dex though because as they are between two very vast extremes every day, what is lost in the morning is probably replaced doublly so at night when there is underdosing.  not that it makes it ideal though.  Just very crude in my opinion.    In reality, that is not what should be happening is it?  It’s like exposing a child to two extremes every day and accepting that it is ok because there will be catch up even at those two vast extemes of over then under treatment.  

Well that is what I can see Doctors who don’t approve of it feel anyway.  You cannot just assume that because a drug it is higher in the morning and lower at night that it mimicks the exact levels of cortisol and circadian variation perfectly and will not be causing these two gross extremes day in day out.    It is a known fact that the shorter the dosing periods, the less potent and less strength corticosteroid you need to give, which means less side-effects and less exposure to androgens withihn the period it was meant to cover the child. 

If your even over dosing a child with HCT to a certain extent this is a very crude replacement of that a normal halrthy adrenal gland can do.  But dex is many steps more cruder than that in that sense due to those two very vast extremes.  

It is when CAH children are exposed to too great an extreme within any one period during their treatment that they suffer the side-effects of both scenarios.  I.e. inappripriate hormone levels in the lows and highs of it.  This is AS likely to occur day to day as it is occasionally when they outgrow a dose.  Once in a while is bad enough when they grow out of an HCT dose, but everyday was as far as I was concerned a little too much when I thought along those lines.  Slow and steady wins the race.  Thats how growth for children is. 

If her levels have been out for some while, would that be any connection to the pulled muscle?  Had she injured herself in sport or activities at any point?  Just wondering. 

Anne-Marie
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