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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