LOL!  Hey---I mastered the PC today---don't ya think your asking too much?

My brain is drained now. 

When I went for the last appointment and saw Paul Hofman--Ash's former endo---I kept slipping up because I would say "replacement" and he answered that it was slightly more than replacement as they had to switch the HPA axis off---otherwise that is were you get the problems.  So although they are replacing what the kids take, they have to dose a smidgen more to make sure that this is achieved.  I think basically it is because as he tried to explain, things fluctuate from day to day in normal circumstances, so they aim a tad higher to stop that.  However, the trick is not to do it sooo much that it suppresses growth.  Most of what he said made sense.  I however am not in agreement with him on the mode of testing that he uses.  

So what I was saying above is looking at that chart we had here the other week, it illustrated that cortisol peaks at 3am and 7am.  We want to avoid that---because in it's place 17 OHP peaks instead which is the pre cursor for all the androgens.  You therefore need to take into account how long a tablet is going to take to peak in the blood serum do you not.  If you take it at 3am, it will take some time to do that.  It neds to be taken well before.  For example we Ash has his tablet at 2am now.  No reason why not to either.  It anticipates that peak, and there is still enough around to last until 7am when he has the next dose.  Also, he is not being waken at 10pm.  he goes to be before 9pm and get's 5 hours sleep atleast where growth hormone can work.  Even if he had a dose of 2.50mg at 2am, that is not going to be quite as destructive as pred last thing at night as some advocate now OR a high dose of hct at 10pm.  At the same time, I have the added insurance that it will cover him where it counts anticipating what is going to happen at 3am.  If I do not---by the time the pill starts to work there may already be considerable levels of 17OHP.  The whole objective is to stop the 17 OHP and even acth.  

The same applies with the 7am dose.  We started taking at 8am, but when I see the chart Laura sent to me it occured to me that when she charted over the top---accrording to that chart, we were dosing too late.  These are my personal feelings and since a doctor also pointed me to that, and I am thinking along these lines now, I feel timing is everything where dosing is concerned. 

I just feel that hct is not the correct med to give in the monring now.  I tried 4 times a day dosing and there was more room for non-compliance with that regime.  That is why I think that the pred is better in the morning.  perhaps 1mg of pred would be better coverage---especially since kids are so active sometimes.  Like we discussed above---no matter what you dose where hct is concerned, it is ALL secreted 6 hours later.  So me dosing at 7am meant that Ashley was not getting his med until some 8 hours later and by that time, it is minimal traces in the blood.   He would be extremely low on cortisol and would be having androgen breakthrough there also.  Rather than burden the school with responsibility of dosing, I figured that pred given at 7am of 1mg would be a good enough dose to carry through to say 4pm.  Does anyone have any idea what the levels of pred would look like on the chart at that amount?  Laura?

Then at 4-5pm a dose of hct of say 3.75mg for Ash would probably see him through until he goes to bed. 

The other thing that bothered me looking at the chart is that cortisol remains at 'a' level even though it is very minimal it is still there ticking in the background.   will post the chart below for you to see it again.  However, when I studied the chart that Laura did, it showed that the cortisol levels plummeted from  before midnight to well below the scale beyond zero, not to raise again until perhaps when the next dose was taken.

What I had in the back of my mind as I studied it was that possibly there would still be minimal traces in the blood serum really through out.  Reason being is that we do not pee as much in the night and we have to do that to excrete the drugs don't we.  So hopefully, a dose at 4-5pm would still be floating around very minimally because a child is asleep.  In fact I think it said it takes 2 hours longer than it does during the day for drugs to be excreted.   But I think Laura would have factored that in when she did the charts. 

I'm just looking forwards to the 24 hour profiling really or was!  I guess that that will be the real test.  It was good seeing the chart though because it helped me to figure what is right at this end for Ashley.