It ’ll be good when they manage to complete setting the labs up here for the 17 OHP filter paper testing.

That way we will be able to take a drop of blood just before each dose and check if they really are covering him.  The reason it is taking so long is because they are going to be using the same lab that they use for Newborn Screening and they need to get things properly established so that those two testing areas are kept separate from eachother, and things don’t become mixed up.  

I’ll feel better when we know that each dose is giving the coverage that it should and we see good normal growth.  

Our Doctor was worried and mentioned that raising the 3am dose may suppress GH, but when I researched that further, GH is mostly secreted when an individual enters into SWS (slow wave sleep) just an hour or so after falling to sleep and that REM sleep is occuring just before you wake up--that is where less melatonin and GH is secreted.

Often we would try to wake Ashley at 11pm and he would take a long time to wake and cooperate and open his mouth to take tablets.  I felt he was in the deep slow wave sleep at that point.  REM sleep would occur in the earlier hours just before waking and is most likely to occur after 3am than before it.  So I could not see how giving a high dose then as opposed to 10pm would really suppress GH--which by that time should be being secreted if child went to bed at 8pm.  If it did, when you think about it, cortisol levels rise anyway at that time--so shouldn’t GH be sort of be being secreted less anyway after 3-4am?  It just seems to me to make absolute common sense to mimick the cortisol as near as possible because then everything else that is secreted around that or is suppressed when cortiso, is raising or higher in the blood serum falls into the pattern it should do also.  This means that  GH and melatonin are secreted at the right times and are suppreessed at the right times.

Normally on conventional dosing, at between 3-4am the cortisol levels attempt to peak, and in CAH they cannot and therefore as we know, 17 OHP is rising from there on out.  You can see that clearly on the graphs in that Moeller study.  That in itself seems to be an odd way to dose then because we know what should be rising is cortisol from 3am not 17 OHP, and therefore when dosing with circadian dosing, your avoiding dosing where you know it is not usually produced in excess.   I personally feel it is just switching things around to the way they should be.

In the whole times since Ashley has been on steroids ( ten years) it was to my understanding that Doctors  would "replace" what kids cannot make when they need it.  I know that it is impracticle to ask parents to wake at that time, but as soon as it was realsied that this was the case other advances should have been made for corticosteroids.  If it has been known that cortisol levels are naturally low at night (and they knew back then when they did this study) why is it that these kids are given large doses of replacement meds at the wrong time, i.e. 10pm?  Your not telling me that that does not suppress GH in anyway or is not growth toxic.  To me it just seems that with the advances of medicine and the ability to delay release of a drug, that as soon as a child is able to swallow a pill whole they should be on delay relase pills at night to help them grow normally.  I feel that manufacturers should have been on to this.  They have been making these drugs for over 50 years and it is sad that they would know this stuff and advocate people take huge doses of corticosteroid that do not even do the job they need to in suppressing the 3am peak anyway!  All they are doing is causing side-effects at that time.  Bones cannot grow surely with high levels of cortisol, much less lay calcium?  

At some point these things have to be taken seriously.  I wake now at 3am to give med’s, but I certainly hope that in proving that this actually benefits my son that manufacturers will be involved and advised about the whole thing.  They are the ones that can do something positive in developing a late release pill.