Debbi,
The ped endo didn't agree with my son being on Florinef. HE's very dificult
to control, his last 17-OHP's were 11,000. He was diagnosed 1 yr ago.
Selena
----- Original Message -----
From: Jim & Debbi Watson <jrwatson@...>
To: <CAHsupport@onelist.com>
Sent: Sunday, February 27, 2000 2:33 PM
Subject: Re: [CAHsupport] Introduction


> From: "Jim & Debbi Watson" <jrwatson@...>
>
> In truth, we see our ped endo for work-ups and she analyzes our blood work
> results, etc. We saw her a lot when Kyle was a baby and has trickled to a
> more normal pace now. Yeah!! I am curious as to what the ped endo in
your
> state objected to with NIH? I know that there are risks about one of the
> meds in regard to the liver...but other than that. When was our son
> diagnosed?
> -Debbi
> -----Original Message-----
> From: Bruce Vincent <batmanv@...>
> To: CAHsupport@onelist.com <CAHsupport@onelist.com>
> Date: Sunday, February 27, 2000 2:25 PM
> Subject: Re: [CAHsupport] Introduction
>
>
> >From: "Bruce Vincent" <batmanv@...>
> >
> >Well, Debbi,
> >There's only 1 ped endo in our state and she refused o care for our son
> >because she doesn't agree with NIH. So, our regular ped has agreed to
care
> >for our son. He and NIH are in close contact. We go to NIH every 6 mos
> for
> >testing. My ped draws the necessary blooddraws and ships them via FedEx
to
> >NIH. They make a great team :o)
> >Selena
> >----- Original Message -----
> >From: Jim & Debbi Watson <jrwatson@...>
> >To: <CAHsupport@onelist.com>
> >Sent: Sunday, February 27, 2000 2:22 PM
> >Subject: Re: [CAHsupport] Introduction
> >
> >
> >> From: "Jim & Debbi Watson" <jrwatson@...>
> >>
> >> Hi Selena-
> >> Just happened to be downloading a looooong program when your e-mail
came
> >in.
> >> I also have a 4 yr. old son with salt-wasting CAH. I also have a 6 yr.
> >old
> >> daughter who does not have CAH. Our endo has brought up the NIH study
in
> >> the event he becomes difficult to control. We live in Northern Alabama
> >and
> >> see a ped endo locally. Where do you see your endo?
> >> -Debbi
> >> -----Original Message-----
> >> From: Selena Vincent <batmanv@...>
> >> To: CAHsupport@onelist.com <CAHsupport@onelist.com>
> >> Date: Sunday, February 27, 2000 2:16 PM
> >> Subject: [CAHsupport] Introduction
> >>
> >>
> >> >From: "Selena Vincent" <batmanv@...>
> >> >
> >> >Hello Everyone,
> >> >My name is Selena. I have a 4 y/o son who has CAH. We are currently
> >> >with NIH's experimental protocol for his treatment. We live in
> >> >Louisiana. I also have a 1 y/o daughter who does nothave CAH.
> >> >Selena
> >> >
> >> >
> >>
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