Wow! My girls are 12 and I have NEVER given them that shot. We've had
fevers and all sorts of things happen (been hospitalized with severe
dehydration a couple times each.....maybe the shot would have helped!), but
I don't think I was ever in fear of the things you described. Maybe I need
to catch up on some reading....at any rate, they are extremely healthy so
maybe I've just been very fortunate.

Angi

----- Original Message -----
From: "preston" <preston@...>
To: <CAHsupport@yahoogroups.com>
Sent: Sunday, February 25, 2001 12:07 PM
Subject: Re: [CAHsupport] Digest Number 64


> 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
> >
> >
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> >
> >
> > Your use of Yahoo! Groups is subject to
http://docs.yahoo.com/info/terms/
> >
> >
>
>
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>