Another thing.... infrant vaccinations can fever and again a fever can kill
your baby (ADRENAL SHOCK). I waited until my son was over a year old so
because he wasn't he daycare at the time and was not at high risk. But again
remember when you get the vaccinations - triple the cortef. And give tylenol
for fever. Give extra fluids orally. Watch him ver carefully for signs of
an adrenal crisis.... sleeping too much, listless, rag doll like, no energy,
etc. Don't think... oh it is the shot and he will get better. You must keep
the fever down and give extra cortef for the stress of the fever. People
without CAH, their bodies make extra cortisol (cortef) - you baby does not
and you need to make sure that you are giving him more or he can die. This
is your responsiblity. Make sure you know how much tylenol to give and give
it on schedule - wake the child or give it in his sleep. This is
important!!! His life depends on you. Set your alarm for medications and
give them on time. Especially tylenol. Make sure you have therometers and
tylenol or motrin (I prefer motrin) on hand.

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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>
>