Adele,
I remember the stress when the twins were first born and diagnosed, so
I completely understand what you are going through! Since you're not sure
of his diagnosis, I'm just going to tell you what I know about CAH (my
daughters have hyperplasia, severe salt-wasting variety). They can do
everything other kids can do, except we have to remember to take our meds
every day (they are on 3 times a day at this point...they turn 12 today and
tomorrow). They even went to girl scout camp last summer and were no
different than anyone else. If you are diligent about his meds, his bones
will still age slightly faster than normal, which usually results in a
shorter adult height, but hey! There's short people everywhere for all
sorts of reasons. It's not a terrible handicap or anything (speaking as a
5'4" adult...LOL!!). I told my girls, who are expected to reach 5'2", or
thereabouts, that it just meant they can date short or tall men! LOL! (You
need to learn to have a sense of humor or the stress will just do you in!)
There's a wonderful book that I was given, and a few of the other folks
here have heard about also. I copy/pasted some of our conversation about it
below and there is a link where you can get the book. Its very easy to
follow and you can sit with it and absorb as much or as little as you want
at a time. When I was first being told my girls had this, I was still
hooked up to all sorts of meds from the birth and was in and out of
consciousness. To top it off, the doctor had a very thick chinese accent.
I just kept smiling and nodding. Then when my husband showed up, I told him
the doctor needed to talk with him! Several weeks went by of constantly
talking to doctors and nurses before we really had a grasp on it, and then
one wonderful doctor gave us that book and so many things became clear. We
still have questions from time to time, though. I hope you feel comfortable
asking us here. I'm sure any one of the folks here would be happy to help!

Angi



Here is a web site from Australia with a book to download and print about
CAH.

Roberta

> I actually have this book! It is wonderful!! I found it to be especially
> useful when grandparents and aunts and uncles were asking questions. I
> would highly recommend it to anyone. Thanks for forwarding the
information
> for it!
>
> Angi
>
>
> > > The CAH Booklet " Your Child with Congenital Adrenal Hyperplasia"
> > > written by Assoc Professor Garry Warne from the Dept of Endocrinology
> > > at the Royal Children's Hospital Melbourne Australia is now available
> > > on the Net
> > > address is: www.rch.unimelb.edu.au/publications/
> > >
> > > Kind Regards
> > > Dot Gronn