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@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
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> 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
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>
> 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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