http://www.medhelp.org/nadf/

Here is a web site about adrenal disorders.

Our first child almost died because no one knew he had CAH. He was 5 weeks
old and very sick. He lost weight - from almost 9 pounds to less than 6
pounds. First the doctor thought the scale was wrong and then she had no
clue what was wrong with him. It was very scary. I also thought he was the
only one in the world with CAH.

Now he is 7 years old and in first grade and doing fine. The nurse at
school gives his afternoon pill and he goes to an afterschool play group. He
loves to read to do math. This weekend he has been working on his math book
for a math contest. We also have a 2 year old son with CAH. He goes to
daycare at my work and is also doing fine with CAH. Both have salt wasting
CAH (they need extra salt in their diets).
MOST IMPORTANT THING: if your baby has a fever or vomits you need to give
the cortef by injection immediatley. Triple the oral dose if the fever is
100 but with a small baby a fever is an emergency (even if the infant didn't
have CAH - a fever is very serious for an infant and more so with CAH - they
do not have the stress hormone (cortisol). You need to give the cortisol
immediaetly and go to the ER and for IV fluids. The hospital can make you
wait in the reception room too long and the baby can die from adrenal shock
in the waiting room. So you must know how to give the injection yourself.
Also the IV fluids are very important to stop dehydration - lost of sugars
and salts. Do not wait!! Go the ER immediately. Or your baby will die from
adrenal shock. Coma... and death. YOU CAN NOT OVER DOSE BUT IF YOU DO NOT
GIVE IT IMMEDIATLEY - THE BABY WILL DIE!!
Do not wait for any reason - do not wait for the next dose!! Do not wait and
see how the baby is doing - give the stress dose immediately!!!!!!!!!!!!!!!
Anyone that cares for you baby other than you - need to know this and needs
to know to call 911 immediately. If the baby is in a coma - the injection
needs to be given within 30 minutes or there will be brain damage and death.
You need to give the meds on time and on schedule. They take cortef and
florinef between 7 and 8 am; cortef between 2pm and 3pm; and cortef between
10 and 11 pm. It has have to be precisely at 7 but between 7 and 8am. Never
(if possible or repeatly) past 9 or 10 am because it would be so off
schedule. For one thing there is a hormonal (cortisol) surge in the morning
and late at night and they really need the meds that (because they do not
produce cortisol and they really need the meds on time - within the hour).

I think the weight gain and height needs to be checked closely because the
cortef is prescribed based on body mass and blood chemistry. The ped endo
doctor needs to keep a very close eye on this because the meds can be wrong.
Especially not enough cortisol ( weight lost) can be very serious!! Too much
over a long period of time - and growth problems can happen. It is a real
balancing problem.

I live in Alexandria, Virginia (Washington DC area). My email is
preston@...

Roberta
----- Original Message -----
From: <CAHsupport@yahoogroups.com>
To: <CAHsupport@yahoogroups.com>
Sent: Sunday, February 25, 2001 3:03 AM
Subject: [CAHsupport] Digest Number 64


>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. hello
> From: adele543@...
> 2. Re: hello
> From: "Angela Strong" <jaade1@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Sun, 25 Feb 2001 02:41:20 -0000
> From: adele543@...
> Subject: hello
>
> my son is eight weeks and is being treated for hyperplasia except we
> are not sure if it is hyper or hypo or something else. I was just
> looking for more information on it cause there are alot of unanswered
> questions i have. he doesnt produce cortisol and is salt wasting but
> he is also alkalosis(?) his endo and peditrician are wonderful but
> there are questions they cant answer like will he be able to do
> everyday "kid" things? that and it is frustrating to not know what
> type so i am interested in learning as much as i can about this.
> Gabriel is doing great since he started the corteif and sodium and
> florteif. He has gained a ton of weight and is more active. Also i
> dont think i understood alot of this correctly ( i was a little upset
> when they explained it to us) if he takes his medicine will his bones
> still age faster? if you could give us any information we would really
> appreciate it. thank you adele
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
> Date: Sat, 24 Feb 2001 21:49:45 -0500
> From: "Angela Strong" <jaade1@...>
> Subject: Re: 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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>
>