Hi!
Thought I’d throw this out and see what other parents think. My daughter has SWCAH and is just shy of two. She is currently on a low dose of hydrocortisone (1.6mg/3xday=4.8mg/day) and .05mg flourinef a day. For the past two months we have drawn lab 1st thing in the morning before her morning meds. The previous month, her 17OHP was 18ng/dL. We lowered her dose by .5mg (to the previous stated value) and this last month she was at 20ng/dL. I think that’s way too low- esp. for first thing in the morning.
So the labs indicate she’s oversuppressed. However, she’s only 22lb (~5th percentile in weight) and about 31" tall (~40th percentile in height), something I would not expect to see in an oversuppressed child.
Anyone have a problem like this where the labs and growth curve are saying two different things? I’m tempted to leave well enough alone since she seems to be growing well (my husband and I are not big people!) She is on compounded hydrocortisone since her doses are so low and I wonder if that is where the problem lies- I keep hearing evil things about the compounded form of hydro!
And I’ve read some parents have the pharmacies weigh out the dose of cortef and place it in capsules instead of having to use the compounded stuff. How well does that work and how did you convince the pharmacies to do it!?
Thanks!
Martha