Judy, sounds like you learned the medicines "lasting" effects the hard way.  I am sorry your son had to go through that! 

That makes sense on the reasoning behind the less times per day with the other medication.  I have always heard that compliance is the biggest hurdle with CAH later on in life.  Boys as well as girls, of course.  I mean having more energy, being thinner, and having that natural tan would all be temptations for me to want to skip a little.  (Especially at an age where I felt invincible anyway!)

We’ll be watching her closely until the next blood draws.  Hopefully we won’t encounter anything major until then.  (Other than this crying at the drop of a hat!)

It makes me think about what Dr. Migeon told me last time I was at John’s Hopkins.  "When we started treating CAH.  Before all this new bloodwork technology and DNA, we just treated the symptoms.  Each child was treated based on what their bodies called for.  Actually, we do the same thing with CAH now!  Every child with CAH is different and has different needs.  DNA results mean nothing when it comes to the actual treatment."

Of course the dream is that you find your sw child is making at least some cortisol and getting the message through.  AND that we’ll win the lottery.  But those of us (all of us involved with CAH) understand what it’s like to be part of a small percentage and that anything can happen so who knows! If we do win the lottery, I see a sudden influx of cash into stem cell research!

Thanks again for your sharing and input.  It helped. 

RebeccaM