Hi Julia,
Well, in looking at your daughter's old vs. new tests, I think that, if it were my child, I would want to hold steady with her current meds (like Laura K. and Val have also suggested), but I would probably ask for a new test sooner than 3 months are up....maybe, like 6 weeks after the last one. The only other thing I might do, at this time, is have this new test done in the morning, before meds, to see how the numbers change, without changing anything else. Then, if blood is going to continue to be the main method of assessing control, I would do all future tests in the morning before meds, after getting these new baseline numbers established.
I know it has been discussed before...many times...whether it is best to take tests before or after meds. Let me just say that I think it's possible to get a sense of control, no matter when you get the bloodtests done---as long as one knows how to evaluate the information---but I do also feel that there is a reason why getting them in the morning, before meds, is what is most widely recommended. I won't bore you with a long discourse on the subject, but suffice to say that I firmly believe the numbers can lie, and getting them before meds, in the am, is probably when they are liable to lie the least. ( How's that for boosting your confidence in lab results, when you're already frustrated, huh?)
I think I've used this analogy before, but it would be somewhat akin to trying to figure out if you've gained or lost weight. It's not like you absolutely couldn't figure it out, even if you're fully clothed and have just eaten a huge dinner. But it's much easier to get to the bottom line, if you weigh yourself, in the morning, naked, and before breakfast. Fewer variables to consider and account for. So, it is, I think, with getting bloods, at the height of ACTH secretion (~8AM, give or take), before meds.
The swings in your daughter's numbers, and the contradictory signals you are getting, are, I'm sure, what is frustrating you. Personally, I give weight to each of these things, in the following order: 1) Clinical symptoms---growth, weight, moon-face, temperament, etc. 2) Androgen levels 3) 17-OHP. Evaluated from all angles, it seems like your daughter was oversuppressed, on her old dose of meds. Now it sounds like she is somewhat breaking out of the oversuppression rut, with her happier demeanor and these higher numbers, though it's unclear to what degree.
Using the height and weight that you gave, both her old and new doses of cortef are actually pretty low (10.84 mg/m2 vs. 8.134 mg/m2). Given her poor growth (more than what her numbers say), I think a dose reduction last time was warranted. But even with a rapidly rising 17-ohp, after this reduction (and with only a 1/4 tab difference in cortef dose...amazing!), I would hesitate to immediately up her cortef back to what it was originally, at the risk of gettoing back into the same rut of yo-yoing levels.
Because the signals and numbers you are getting are contradictory, it's a bit difficult to tell where your daughter's control is at, right now, and where it's going to end up. I don't think there's any harm, though, to adopting a wait-and-see attitude, for a bit, as others have said. When, and if, the time comes to readjust her meds, I think I would look first at slightly increasing her florinef, if the renin is still high (not to what it was, but somewhere in between), and tack on any additional cortef amounts, if needed, to a morning dose, rather than back to the late evening one. I would also be interested in whether or not control improves, without changing total dose, merely by moving the afternoon and evening doses to earlier times.
Bottom line, I guess...assess the clinical signs first, is my feeling. They won't lie, though the numbers might. Then, worry about excess androgen secretion, because excess androgens are what are going to cause the most problems. To me, 17-ohp is the most fickle and, therefore, least reliable. We test urine, not blood....the test that would be comparable to 17-ohp, for us, would be pregnanetriole. Believe it or not, I don't even know what my son's last two pregnanetriole numbers are...i know I'll find out eventually, but like Laura K., I've started to consider it to be secondary in importance....Ugh! I don't know if this has helped, or has just served to confuse things even more. Good luck with your doctor's appointment on Monday.