I don't know the link to the book that is listed but here is a good link to
a pamphlet about how to give the solu-cortef injection for fever, vomiting,
injury - which is important, especially with a newborn with CAH. Never take
a fever for granted!! A fever can kill you baby.

http://www.rwi.nch.edu.au/endcond/httoc.htm

If you can't get the link to open or whatever - email me and I will mail you
a copy. I hope that the doctors gave you instructions about the solu-cortef
and you have it with you at all times. A baby less than 3 months with any
kind of fever can be very serious. I waited until my son (now almost 3
years old with CAH was over 1 year to get the baby shots that cause fever,
but I was so scared because we had a daughter die from a fever and adrenal
crisis at age 2. The doctor should have told me to give the injection. He
insisted to just double the cortef, but in the morning she was in shock and
died. Please be careful with your daughter and fevers. If she vomits =
wait 30 minutes and give double dose of cortef. If she has repeated vomiting
(vomits twice)- give the injection and go to the hospital for IV fluids.
Also give the injection if she has loose bowel movements (5 or more - I
would really rush to the hosptial to get an IV). Dehydration is a big
concern.
Congrats! with a new baby!! I have a 7 year old son with CAH, Stephen, and
Adam (almost 3 years old) with CAH. I am pregnant and will have a baby - due
8 August. He will not have CAH (genetic testing). My daugther, Jessica, was
my second child with CAH. I took dex (a form of cortef) and she did not
need surgery.

Take sure that the doctor take chem 8, plasma renin, and 17OHP blood tests
frequently for your daughter (as a newborn - I had it done monthly. You
must watch the 17OHP very carefully. The 17 OHP is more important than the
sodium levels. She must get enough cortef or she could go into shock.
REMEMBER WITH FEVER = GIVE THE CORTEF IMMEDIATELY - DO NOT WORRY ABOUT OVER
DOSING. You can not give too much cortef for during a fever but if you do
not give enough she can die. Don't think the ambulance will come or you can
get to the hospital in time. You must know how to give the injection. Do
not wait!!

I put 1/8 tsp salt in my son baby bottles - 5 times a day as a newborn.
With breast feedings, you must give salt solution. As she gets older, she
can have the florinef reduced and have table salt in her baby food.

Roberta Preston
preston@...

Here is a picture of my boys from last year.... they are doing fine.





----- Original Message -----
From: <CAHsupport@yahoogroups.com>
To: <CAHsupport@yahoogroups.com>
Sent: Saturday, March 24, 2001 3:03 AM
Subject: [CAHsupport] Digest Number 66


>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. My newborn was just diagnosed
> From: "Jenny Humphrey" <JHmphr3@...>
> 2. Re: My newborn was just diagnosed
> From: "Angela Strong" <jaade1@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Fri, 23 Mar 2001 16:17:33 -0000
> From: "Jenny Humphrey" <JHmphr3@...>
> Subject: My newborn was just diagnosed
>
> Hello everyone. My name is Jenny and I just had my second daughter on
> March 16th. The doctors initally told us that she was a boy. Shortly
> afterwards they told us they didn't know yet. The next couple days
> were full of anguish, confusion, and many tests. They finally came to
> us and told us our baby was a little girl and she had the severe salt
> wasting form of CAH. This was something my husband and I had never
> heard of and didn't know we were carrying. We have read much
> information since then and the doctors have been excellent but I
> would like to hear from people that have lived through this either
> themselves or with thier child. There are just some things books
> can't tell you. Our family members are having a hard time
> understanding this as they were all at the hospital when they said it
> was a boy. They think that there is something sexually wrong with her
> like she is a hermaprodite. Not all of them are like that but a few.
> I am not sure how to deal with them other than to try to educate them
> more. Mainly I would like to hear from others in a similar situation
> and hear how your lives have changed and much more. I worry so much
> about my daughter( whom we named Hunter) and want to be sure that I
> do everything in my ability to let her live a happy and healthy life.
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
> Date: Fri, 23 Mar 2001 13:20:34 -0500
> From: "Angela Strong" <jaade1@...>
> Subject: Re: My newborn was just diagnosed
>
> Hi Jenny!
> Welcome to the group. We're a quiet bunch, but questions never go
> unanswered.
> My twin girls were diagnosed the day after their birth. They
wouldn't
> tell us their sex until after the sonogram and chromosone analysis.
Because
> they were premature, the masculinization (word?) wasn't as severe, so we
> were pretty sure they were girls. I would suggest you get this book "My
> child with CAH" (does anyone have the link? I seem to have momentarily
lost
> it.) It would be wonderful to help explain this all to your family. (It
> explains everything in plain English...very easy to read.)
> I know just how you are feeling, as does everyone on this loop. We
> were all scared and full of anxiety (and occasionally have our moments
> still) at first. But as you learn more, and you will, you will become
much
> more confident with this diagnosis. My girls are leading an extremely
> active and NORMAL life,....except this whole early puberty thing caught me
a
> little off guard! LOL!! My girls are 12 now, are into Girl Scouts,
Soccer,
> Band, and being pre-teens....that one I could do without! LOL!
> If someone doesn't come through with that link for you, I will check
> it out in the archives of this list and get back to you. I know you'll
want
> to have a copy of it!
> Again, welcome to the group!
>
> Angi
>
> ----- Original Message -----
> From: "Jenny Humphrey" <JHmphr3@...>
> To: <CAHsupport@yahoogroups.com>
> Sent: Friday, March 23, 2001 11:17 AM
> Subject: [CAHsupport] My newborn was just diagnosed
>
>
> > Hello everyone. My name is Jenny and I just had my second daughter on
> > March 16th. The doctors initally told us that she was a boy. Shortly
> > afterwards they told us they didn't know yet. The next couple days
> > were full of anguish, confusion, and many tests. They finally came to
> > us and told us our baby was a little girl and she had the severe salt
> > wasting form of CAH. This was something my husband and I had never
> > heard of and didn't know we were carrying. We have read much
> > information since then and the doctors have been excellent but I
> > would like to hear from people that have lived through this either
> > themselves or with thier child. There are just some things books
> > can't tell you. Our family members are having a hard time
> > understanding this as they were all at the hospital when they said it
> > was a boy. They think that there is something sexually wrong with her
> > like she is a hermaprodite. Not all of them are like that but a few.
> > I am not sure how to deal with them other than to try to educate them
> > more. Mainly I would like to hear from others in a similar situation
> > and hear how your lives have changed and much more. I worry so much
> > about my daughter( whom we named Hunter) and want to be sure that I
> > do everything in my ability to let her live a happy and healthy life.
> >
> >
> >
> >
> >
> > 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/
>
>