First of all, don’t worry about trying to ask ALL your questions now.  I’ll be available to you for a good long while.  Since I feel uniquely qualified to help the parents of NSWCAH boys, we can exchange email addresses if you’d like. 

Now, on to your questions.  Yes, I’ve had several "crisis", which were all related to ilness or severe dehydration.  Now, unlike salt-wasters, my crises have not been truly life threatening (except once, when toncilitis rapidly turned into a peritoncilar absess and nearly closed my throat), but they did involve the darkest moments of my life.  Imagine the worst you’ve ever felt physically, coupled with the worst mood you’ve ever been in -- that’s what my "events" have been like. 

But luckily, we have a Magic Bullet called Solu-Cortef.  The 100 mg. injections are truly amazing.  When doubling or tripling my dose due to illness/stress/ dehydration doesn’t due the trick, an injection has worked wonders.  Only to be used when absolutely necessary, they are a "weapon" you should keep handy in your "arsenal".  I use battle references because that’s what living with CAH can be, at times.  Make certain that you are comfortable injecting your son if and when he needs it.

No, I do not take Florinef.  Yes, I dehydrate quickly.  I’ve always been very active, and perspire a great deal.  I drink fluids all day long.  As far as proper dosing, like others here have posted, it is trial and error as you go because all our cases are so different.  The important thing as a parent is to CLOSELY OBSERVE YOUR CHILD.  If you see him "drooping" or acting out on a regular basis, this may very well be dose-related. 

Here’s one way you might relate to what he’s feeling:  as a woman, you probably experience mood changes during the various stages of your monthly cycle.  These are hormone-related, and so are mood changes of a CAH child whose hormones fluctuate.  My wife can literally see it in my eyes when I forget to take my medicine (hydrocortisone 60 mg daily; 40 am, 20 pm).  You can get to know your child this well.  If you think he’s crashing in the afternoon, discuss increasing the frequency of his doses, or altering the total daily dose while constantly monitoring his levels with your Endo.  My 17-OHP has never been properly controlled (it’s currenly about 1700), but considering my overall health otherwise, and my already high dose of hydrocortisone, we are keeping my dose where it is.

That’s all for now.  Take care, Eric