Re: Regarding NIH wait and extra blood draws

December 11, 2006

This is interesting, but doesn't fit with our experience. We were told that

was being put into the part of the NIH study, and all of his

symptoms do seem to point to . But we waited seven months for the phone

call. We don't have the Cincinnati doctor, but we do have a doctor who wrote

one of the best articles I've read about differentiating between fever

syndromes.

-

On 12/6/06, deannabndr <mattdeanna@...> wrote:

>

> I had been meaning to post this for a while and to gotten around to

> it. This might clear some things up for memebers with questions

> about wait (why some get in so quick like us) and about the viles to

> get a blood draw in during a fever at home.

>

> After our visit to NIH last Oct after waiting just a couple of

> months since submitting our application, I spoke with Beverly (she

> wasn't there when we were and there was a mistake in our

> paperwork). I asked her about the differences in the wait and about

> the extra blood draw no one else has heard of. She said there is a

> sub study going on for only. They are accepting patients

> quickly that are referred by a particular doctor (one in Cinncinati

> I believe) that is super familiar with and they trust his

> recommendation. Also Dr Kastner is reviewing each application and

> medical records himself and those that appear to be clearly as

> opposed to the genetic disorders are getting preference at this time

> due to the sub study. (I hope I am saying this all correct). Also

> those they have put in the sub study are taking home instructions

> and viles to have blood collected during a fever.

>

> Hope that helps some!

>

> Deanna

> mom to Zachary, 5yrs

> Kalla 3yrs and Micah 17 mos

> Huntsville, AL

>

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