Thank you so much for your response. It is so interesting how different this condition can be depending on the individual. Jack is definitely reactive to changes in dosing but it seems like more of a pendulem motion.

I love the idea of  "stomping" and "reverse stomping". I am going to definitely discuss this with Jack's dr. Just as you and Claire's dr said, his adrenals really do seem to not respond to "sneaking up". For example, he was oversuppressed (17OHP<5ng/dl). We responded with tiny dose decreases (1.25mg/day decrease) and it took us 6 decreases to finally see his 17OHP go up from <5. Then it went straight up to 551ng/dl.  I was very worried during all the decreases, even questioning if he had CAH (His doses got as low as 3.9mg/m2/day). Now we are moving up again and I worry that we will keep facing undersuppression through successive tiny dose increases until we are back where we started.  

Even though his numbers have been more out of control, then in, we have been fortunate with everything else. He has not had a crisis yet, he is staying pretty close to the 50% height curve, and his bone age is at 2 3/4-3 yrs (he turned 3 in June). So, I try to be thankful for that, but I sure would feel better if we could get a period of good control. I also want to watch height very closely because neither my husband nor I are very tall so we don't have much wiggle room for stunted growth.

Jack is on a 3x/day dosing schedule (2.5 mg in the am, 1.25 in afternoon, and 1.25 at night). His blood testing has varied. The longest we have ever gone is 3 months, the shortest 5 weeks. Once, when he was on his lowest dose (2.5 mg/day) we switched to a 2x /day schedule. He didn't seem to do well on that. I really favor the 3x a day schedule.

Well, thank you again. I really appreciate your thoughts.