I strongly recommend reading the pamphlet as well. They talk alot more
about glucose than our doctors do...not sure why. All the information is
hard to take in.
Your child might not reach full height potential for 2 reasons. 1)- too
much cortisone and that can suppress growth. 2)-too little cortef and
growth could advance too quickly and have reduced height. So...it is sort
of a catch 22 situation. My son has stayed in the 10% for height. My
thinking is...as long as he stays at the same rate, then we have are having
consistent control of the situation. If it yo-yoed ....then I would worry
about his health. Which is the key thing here! He alive and healthy!
My son plays soccer and will be playing t-ball soon. He is a super athlete.
You just have to be a parent who is in tuned with your child's health!
-Debbi
-----Original Message-----
From: Angela Strong <jaade1@...>
To: CAHsupport@yahoogroups.com <CAHsupport@yahoogroups.com>
Date: Saturday, February 24, 2001 8:59 PM
Subject: Re: [CAHsupport] hello


>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
>
>
>
>
>
>
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>
>