Hi Carol,

Thanks for responding.  It was interesting to hear that the ACTH rythm persists as a constant across the board.  I want to tell you about how meds time influenced my daughter’s waking time. Initially I used to give her meds at 10pm and the next at 6am. She would actually go back to sleep both times and wake at about 8am or so. Then she started getting up at 10pm and staying awake and also waking up for the day at 6am. I changed the dose time to 11pm and 7am, thinking that the closer I get to the ACTH secretion peak the better. So she went to bed by 9.30pm still but wakes up at about 10.40pm and after I give her the meds will go back to sleep and then now she has started to wake at 7am.  Her bed time did not change, but for some reason around meds time she starts to wake up and then again is up for the day around meds time.

Maybe a Pavlovian response for all you know , but don’t you think somehow the body getting used to getting the rush of hydrocortisone at that particular time has incited a reaction, backwards pretty much.  Does it mean that regardless of time of waking, across the board, cortisol peaks at 8am.

Our endo has a very conventional approach. He says, if she is growing fine, is healthy, does not have any side effects, then if the meds schedule is working for you,stick with it. It’s like why change a good thing ! But I’m not so sure that in the long run it is the right thing to do.  With our children, we will never know what their unconstrained potential for growth would have been without CAH. I would never know if my daughter might have slept through the night if not for the meds. If her unexplained nasal congestion has something to do with CAH, or if she was just chubby because I had breastmilk of high fat content. Talk about frustration !

My biggest concern right now is that the blood tests are not showing the true picture and that she could be under or over suppressed and we will not know that until it is too late, since her growth pattern sometimes will not be a true reflection and I’ve also heard that hydrocortisone has very limited effect on growth stunting even in a Cushing state. It is the other ill-effects I worry about. Bone density loss and musle mass loss ,hypertension, water retention on one hand and the continued virilisation and effects of androgens on the other.

As you say, thus is the nature of the beast and we have to learn to tame it one way or another, conventional or circadian !

SueG