Carol M.Hi Sue,
I’m going to try to dash this off, so I hope it makes sense.
First, as clarification: As I mentioned, ACTH levels do rise and fall in respond to an individual’s actions. So, there will, of course, be variations in ACTH secretion patterns based on an individual’s daily actions. But, when we talk about circadian rhythm, I think we are talking about something much more entrenched than that...and that is the part that generally doesn’t change from day to day, unless there is some sort of sleep or seasonal disorder.
I read an interesting article about the circadian rhythm of ACTH production in Addison patients. Like CAH patients, Addison patients produce no cortisol. So, any cortisol in the system is externally given. Basically, the study had to do with examining the effect of exogenously administered cortisol on the circadian rhythm of ACTH production. In a nutshell, the conclusion was that there IS no effect....in the presence of NO cortisol or exogenously administered cortisol, the natural circadian pattern of ACTH secretion remains. The exception to that would be in the face of very high doses of glucocorticoids. Then that rhythm can be abolished.
Soooo.....what i am trying to say is that, yes, the little blips on the screen might change from day to day, and from person to person, but the BIG blip on the screen apparently stays pretty constant, underneath it all. And that is the part that we are trying to "tame" with this dosing thing. Basically, if we know that that circadian pattern of ACTH secretion persists, no matter what------then, we also know that unless we give a CAH person exogenous cortisol, when ACTH levels inevitably rise at those times, then there will also be androgen oversecretion.
I don’t think that the problem between "conventional" and "circadian" dosing has anything to do with doctors not understanding or agreeing about when ACTH levels are supposed to be high or low. I think they all understand this circadian pattern and that levels start to rise at around 3 AM. I think the disagreement in approaches has to do with how best to approach this, since 3 AM is not a very convenient time for most people to give medication....unfortunately, most people would probably forget or sleep through the dose, so that IS a practical concern. So, it generally seems to break down into the "get it before it gets you" school of thought. (I.e. give the largest dose at night before bed). Or the "Forget about the little wave at 3 am,and just wait till the BIG wave gets here ~ 8 am" school of thought. (I.e. Give the largest dose in the morning). That is where I think things tend to break down.
As far as your daughter’s reaction to her meds. and perhaps being more wakeful due to meds being administered at different times: Glucocorticoids have the effect of raising blood sugar. So, it is not completely surprisising that people who take large doses at night sometimes seem to experience insomnia. I suppose it would be like eating a big chocolate bar right before bed! Yes, her cortisol levels were raised, after you gave her her meds, but unless she has a true sleep disorder, it should not have affected her underlying circadian pattern of ACTH secretion. In babies, they are generally established by 3-6 months of age, from what I understand.