Richard,

Here are my thoughts.

I have a 4 month old with salt wasting CAH. I personally think of managing her CAH as being like driving to work in the morning. On the one hand, it’s very important that it’s managed correctly because otherwise someone could die. On the other hand, it is relatively easy to do. Nobody really gets up in the morning terrified because they have to drive to work, and in the same way I don’t think parents with CAH kids should be getting terrified because they have to manage the CAH.

It is true that adrenal shock is very serious. It can come on very quickly as I understand it and it can be fatal. It is also controllable with medications, at least in our case.

For us, managing the CAH means being sure that our daughter takes the daily medications that the doctor perscribed. We do this religiously. It also means having her emergency medications (which in our case is SoluCortef to be administered by injection) handy at all times, so that if she does start to show the signs of adrenal shock (or adrenal crisis - same thing I think) then we can give the shot as the doctor ordered. We also make sure that any caregivers we give her to will also be able to give the shot. So long as we do this it seems like our girl will lead a pretty normal life. We also carry an "emergency letter" from our endo to any other doctor who will treat our little girl in the event of an emergency - the letter tells the doctor to contact our endo.

That is our experience anyway - check out

http://www.caresfoundation.org

Near the bottom of the page is a small link labelled ’Adrenal Crisis’ and I think that is the best writeup of what you need to do that I have seen.

Hope this helps,

Niles.