I forget to say that Adam was on the liquid cortef for 11 months and the
entire time his blood levels (OH17) were elevated and he was losing weight
and not gaining. The salt levels were normal (low normal). So it goes to
show that you can not just look at the sodium levels.

Roberta
----- Original Message -----
From: <CAHsupport@egroups.com>
To: <CAHsupport@egroups.com>
Sent: Sunday, August 13, 2000 3:07 AM
Subject: [CAHsupport] Digest Number 54


>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Re: Digest Number 53
> From: "preston" <preston@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Sat, 12 Aug 2000 18:38:30 -0400
> From: "preston" <preston@...>
> Subject: Re: Digest Number 53
>
> I didn't see the TV show, but I can image! Too bad they didn't do one
about
> the cortef oral liquid for infants and its recall. My stupid doctor
thought
> that kids should stay on the liquid form until 3 years old. My son Adam
was
> born July 1998 and the UpJohns was having problems with the cortef. Adam
> suffered so much. He lost weight, and it still very thin. Thank goodness
the
> doctor finally listened to Dr. New and switched him to the pill. I was
ready
> to fly up to New York to get him treated. As it was Adam had to spend a
week
> in the hospital because of the weight drop and dehydration. And his blood
> levels (OH17) were so high.
> Yes, don't people realize how life threating CAH can be???
> Roberta
> ----- Original Message -----
> From: <CAHsupport@egroups.com>
> To: <CAHsupport@egroups.com>
> Sent: Saturday, August 12, 2000 3:07 AM
> Subject: [CAHsupport] Digest Number 53
>
>
> >
> >
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> > 1. Re: television program
> > From: "Jim & Debbi Watson" <jrwatson@...>
> >
> >
> > ________________________________________________________________________
> > ________________________________________________________________________
> >
> > Message: 1
> > Date: Sat, 12 Aug 2000 00:52:14 -0500
> > From: "Jim & Debbi Watson" <jrwatson@...>
> > Subject: Re: television program
> >
> > Just getting back into town and getting caught up on my mail. I saw
this
> program in the spring and found it to be very one-sided. It was clear
that
> they were steering toward the more sensationalized version of the facts.
> Did you hear any mention of boys with CAH or the salt-wasting factor or
the
> health risks? Only the sexuality. There is a network of people in the
show
> that I have seen on other programs that have made it there mission to
inform
> about Intersexed conditions. I feel that they are misinformed my putting
> CAH in there group, since gender assignment is not an issue. Girls are
> girls and boys are boys. At the CAH board, there was a mom who's doctor
> told her that her son was increased likelihood of being gay as well. I
> frankly don't buy it. But that is just me. Anyway, I would not get too
> worked up about that program.
> > -Debbi
> > -----Original Message-----
> > From: Angela Strong <jaade1@...>
> > To: CAHsupport@egroups.com <CAHsupport@egroups.com>
> > Date: Monday, August 07, 2000 10:10 PM
> > Subject: Re: [CAHsupport] television program
> >
> >
> > Thanks Becky!
> > I know some of the issues we face are so private for most
> people....that's probably why I never heard of some of these things. I
> think I'm just feeling a little over-whelmed from a lot that has happened
> this year and that was just the proverbial straw for me. Thanks for such
an
> honest answer.
> > Twins....fun? Isn't that an oximoron? LOL!! Yes, each and
> every day is a joy.....heavy sarcasm. I think later in life I will look
> back and know that it was all worth it....and Thank Goodness it's over!
> LOL!!! My girls are pretty normal in height right now, but their doctor
> predicts that 5"1' is about all they can hope for....but really that's not
> all that bad. Girls don't have such a bad time being short...I think it's
> probably much more difficult for boys....so we consider ourselves lucky
> there. (I am also not tall...5"4')
> > Anyway, thanks! You don't know how I appreciated your answer
> today!
> >
> > Angi
> >
> >
> >
> >
> >
> >
> > Angi,
> >
> > I have late-onset CAH which wasn't diagnosed until I was an
adult.
> Looking back, I realize that I did have some feelings of confusion during
> the time that I was obviously symptomatic but not yet diagnosed. With
> treatment, my hormone levels are all normal and I feel ...right. I think
> that the gender confusion, symptoms, etc. mostly come with untreated CAH.
> >
> > By the way, I have twin girls too. Mine will soon be 13. It's
> fun, isn't it! My girls don't have CAH but we're seeing an
endocrinologist
> because of possible growth problems. It's hard to really know whether
their
> short stature is inherited or another problem because my growth was
stunted
> from untreated CAH.
> >
> > Try not to worry.
> >
> > Becky
> >
>
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> > ________________________________________________________________________
> > ________________________________________________________________________
> >
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> >
> >
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
>