Debbi,
The study is going good. They are so thorough, it's unbelievable.
Selena
----- Original Message -----
From: Jim & Debbi Watson <jrwatson@...>
To: <CAHsupport@onelist.com>
Sent: Sunday, February 27, 2000 2:56 PM
Subject: Re: [CAHsupport] Introduction


> From: "Jim & Debbi Watson" <jrwatson@...>
>
> I am assuming that since the florinef is optional, your son must be
non-salt
> wasting. I have heard of many other non-salt wasting people with CAH
taking
> florinef to help reduce the amount of cortef being taken. There were
times
> when my son was under a year of age, that he was taking higher doses of
the
> florinef to help keep the cortef down and it helped. good for you for
> keeping your eyes open for the best options for your son.
> -Debbi
> p.s. How is the study going??
> -----Original Message-----
> From: Bruce Vincent <batmanv@...>
> To: CAHsupport@onelist.com <CAHsupport@onelist.com>
> Date: Sunday, February 27, 2000 2:49 PM
> Subject: Re: [CAHsupport] Introduction
>
>
> >From: "Bruce Vincent" <batmanv@...>
> >
> >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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