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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