Karen,

I will try to keep this fairly short.  I have an 9 y.o. SWACH boy.  By the grace of God, Dr. Rivkees was his endo. at 2 1/2 weeks, when he was diagnosed.  He was treated with cortef while an infant. Dr. Rivkees switched him to dex. and he did great on the dex.  The problem ocurred when Dr. Rivkees moved to Yale and we got a new endo.  The new endo. switched him back to Cortef .   My son experienced big problems this past fall.  We were not getting results with the new endo. so, I called Dr. Rivkees.  He stabalized my son on the cortef and then switched him back to the dex.  My son is doing much better on the dex, at least so far.  I think some kids just need the longer acting benefits of the dex.  We followed the cortef dosing like clock work, but he still had trouble.  I think much of it has to do with the ablility of the endo. to fine tune the dosing.   Make sure you understand the how the dosing works as well.  Work with your doc. to learn.  Be educated!  I am learning alot about a condition, I thought I understood.  But I also now know that I followed the doctors blindly.  Serious mistake.  Not all endocrinologist are created equal, especially in treating CAH.  I think it is crucial to have faith and trust in your child’s endo.  no matter what medication he/she is taking.

All the best to you!

p.s.  Carol if you are the same person I spoke with last fall about my son Andrew, I lost your e-mail address.  I would love to catch us.  Drop me a line.