I’ll apologize upfront for this post. I know I should go back through my notes and the archives before I bother you all, but I am extremely crunched for time right now. We are heading out for vacation tomorrow and I just skipped a day of work because my son’s endo was able to get him in for an appt today. (His schedule is very crowded and we were going to have to wait another month to see him if we couldn’t go in today). So . . . on to the questions.

As some of you might know I have an almost 5 year son with SW CAH. He was diagnosed 7 days after birth. We have had pretty good control, although we have alternated between over and under suppression. He reacts to even minor changes in doses and we have had weight issues. We live a pretty healthy lifestyle - lots of exercise, few sweets or processed foods, and as many fruits and veggies as I can possibly squeeze in. Despite that, he gained 10 pounds in two months after his last dose increase.

We are going to try circadian rhythm dosing. He is moving to 5mg at 3:00am, 3.75 mg when he wakes up (7:00am), 1.25mg at lunch (12:30), and 1.25 mg at dinner(5:30).

My questions for any of you on this dosing method .  .  . (1) Did you decrease the daily amount of Cortef when you first switched to this method? Or did you try to keep the same mg/m2/day then check blood levels before reducing? (2) If you kept the same amount (mg/m2/day) did it result in oversuppression? (3) Did you notice any changes in behavior or appetite immediately?

Thanks in advance. When I get a minute I’ll read through old posts and be more up-to-date on this topic.

-Chris