Hi,

My daughter was born December 12, 2002 with CAH.  After 8 days in the hospital the lab finally came back positive for CAH, but the 21-hydroxylase test was still out.  She’d shown no signs of crisis during our entire stay and seemed perfectly healthy on all fronts--she was the biggest baby in the nursery at 9 lbs, 8 oz.  Our endo put her on cortef and florinef just in case.  He admitted that he was still unsure as to whether she was salt-wasting (her potassium had edged up a little, but he said that could very well still be normal), but didn’t want to send her home from the hospital and risk a crisis when she was still so little, but also didn’t want us to have to continue in the hospital.  So, for months we were waiting for this mystery test that we hoped would shed some more light on the situation.  We just found out a few weeks ago that it’s officially lost and that it’s only an effective test before medication has begun!!!  So, now I guess we’re waiting until she’s old enough that both our endo and us feel comfortable taking her off florinef and monitoring her condition, with the possibility of it resulting in an adrenal crisis.  Has anyone else had such and experience?  She’s been so healthy this whole time (I truely thought the test would come back negative the whole time we were in the hospital even despite her obvious virilization because she seemed just like a normal healthy baby) that I fear she is being over-medicated with unneccessary florinef.

Thanks.