ToniaI just posted this below but thought it might be helpful here too.
We have 2 daughters (8 & 6) both with ssw cah. Our 6 year old has been struggling with weight gain and not alot of growth. Traditional thinking with all of the endos we have had was largest dose at bedtime or for us it was midnight. After researching cicadian dosing on the board and elsewhere, we thought we would give it a try. Basically we dose every 6 hours. 2.5 mg @ 8 am, 2.5 mg @ 2 pm, 2.5 mg @ 8 pm & 5 mg 2 am. The thinking behind this method is that the body surges growth hormone around midnight and then the body has it’s biggest surge of cortisol between 2 & 5 am. By giving a large dose of cortef at midnight, you could be surpressing the growth hormone. By giving it in the middle of the night it most closely mimics what the body would naturally do. Our endo told is this is the best way to dose CAH children but rarely recommends it because alot of us don’t want to get up at 2 in the morning or we forget and the kids actually become undersupressed. I have a special alarm (it’s the Scooby Doo mystery machine and it honks at me ;) ) that wakes me up, I go in and slip the cortef in their mouth, wait for them to chew it and they never even know it. Many times they ask in the morning if I remembered to give them their meds. So far I haven’t forgotten but my point is that it has not affected their sleep. I go right back to bed no problem. They have been feeling very good with this new dosing. I notice they are not as sluggish in the mornings and they are not as moody. I don’t know if that has anything to do with it but the timing seems to correlate. At our last endo visit we saw great results! Our endo said their labs are the best they have ever been! They both gained height but not weight. I really wish I would have done this sooner. It may not work for everyone but it is working for us. Best wishes! :)
Tonia