I do not really know what the endo is going to do.  We just had a brief phone call where he told me the results of the ACTH.  He has been very throurgh with my daughter who is on growth hormones because of her Turner’s.  I assume he will be with my son and this CAH or whatever.  He may order a bunch more tests when we see him the first week in August.  He doesn’t like to alarm the parent so he says stuff like "I’m sure everything is fine but I think we should run this test". Also, he doesn’t like discussing this kind of thing over the phone and would much rather deal with me in person.  He is a 3 hr drive away, each way, so it is hard to just pop in for a quick consult.

The first time he evaluated him for his early maturation, 2 years ago, Chris had fewer symptoms and his bone age was fine so he said sometimes they have a piece of maturation and they go through the rest normally.  He gave me the signs to watch for and call him if any develope.  In the last 5 months his symptoms have increased and his bone age is about a year older at 7. something. I am sure he would be alot more alarmed is his bone age was more advanced.  I think what he is watching is the bone age.  Fortunately he has the growth records and bone age from 2 years ago so he has something to compare current stats with.

I think the genetic testing would be a good idea.  With my daughter, we had her tested for suspected Fragile X.  They found that and the Turner’s was a surprise.  Good thing we were able to be on top of that early.  We had thought her small size was due to Fetal Alcohol and who knows when we would have looked for another cause of it.  Who knows what else may show up for Chris if he is tested.  I can see where it would help us get a better handle on CAH. 

So bone age and growth rate are what they watch and test for mostly?  If that gets out of hand, is that when the meds come into play?  How do they determine if they need the med for stress?  Sorry I still don’t know the names of all the meds yet.  Chris is very active and robust and is rarely sick.  I remember the endo did ask several times about his general health.  It really does seem like he just has pieces of CAH.

Thanks for your help, Andrew.

Janet