Yes Jane.  I have come to realize that my son is on the higher end of the spectrum of CAH.  More importantly (it seems to me) he is an extremely severe salt waster and seems to "crash" with the slightest fluid loss.  Even a fever can send him into an impending crisis.

I truly think that this is the cause for many discrepancies on this board.  We are not dealing with only one strain of CAH and one degree of severity.  It seems that there are no two children who are on the same treatment and/or are responding in the same way to it. 

The good news is that we socialized him just like every other kid and his immune system seems to be very strong.   That is to say that, although he is in the "mainstream"  of society,  he gets sick less than his non CAH sister does.

Don’t get me wrong, we don’t let CAH rule our lives, but we do want to make sure that we incorporate his treatment into our lives so that it seems as natural as taking vitamins.  We have been caught unprepared in the past and regretted it.  We were never given the solu cortef shot from our endo so when he did go into crisis he ended up staying in the hospital for a couple of days.  One time his preschool failed to notify us that he wasn’t feeling well until he was already going into a crisis.  We rushed him to the hospital and the doctors were not sure if he would make it.  He had to be rehydrated by drilling into his bones because his veins were so dehydrated that they were flat and they couldn’t get a line in.

In the beginning we handled his crisis (he was hospitalized 3-4 times) like pros and learned to roll with the punches.  It was not even mentioned much by us.  It wasn’t until he was 4 years old and went into puberty that we were alerted to all the things that can come with CAH. 

He went into puberty and was 2 days away from death (according to his doctor) due to the failure of the liquid cortef (Upjohn).  His OHP levels were fluctuating all over the place and went as high as 25,000+.  His bone age had advanced to that of a 15 year old and his final adult height (due to the rapid bone age advancement) was 4’9".  We were devistated and it was at that time that we found this board.

He is now in the Growth Hormone program with Dr. New and has improved his height potential to 5’7" at current projections.

He now must take daily shots of growth hormone and a monthly Lupron shot to keep him out of puberty but we are trying to make it as "normal" as possible.  We don’t focus on it (in front of him) and, although our stomachs tense up and turn into knots when shot time comes, we try not to show it.

He is a terriffic kid and a joy to have in our lives.  He has taught us more about life than we have taught him.  He is a God send to say the least and I can only hope that I am fulfilling all his needs as a mother and am doing the right thing for him.  CAH is a trial and error treatment.   Part of that is because the meds are based on body mass and that is ever changing.  When growth spurts come on it often follows that they need a dose change and so on.  It’s an ever changing situation,  but I wouldn’t trade it for anything in the world.