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RE: Questins

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All testing is REPEATED at NIH. I would not make the child get tested for

any genetic studies... If they want to do some Immunolgob's fine... But if

you are already going to NIH Why put your child through double studies...

Get the eval and let the ped rheumie know the plan regarding NIH... All

results can be sent to the doc from NIH.

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

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I wasn't sure if they would want us to do that or not. But they were saying

something about checking chromosomes does the NIH do that? Or should I have that

done? I don't want to put him through alot but I am curious if they want to

check for certain things if I should get him tested.

Thanks

Fran Bulone <fbulone@...> wrote:

All testing is REPEATED at NIH. I would not make the child get tested for

any genetic studies... If they want to do some Immunolgob's fine... But if

you are already going to NIH Why put your child through double studies...

Get the eval and let the ped rheumie know the plan regarding NIH... All

results can be sent to the doc from NIH.

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

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NIH does all that is needed... and more than any other lab or physician can

do for the periodic fever disorders... in the USA!!

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

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Fran,

I am confused. 's tests were performed by GeneDx, which I believe

is the same lab used by NIH.

Does the same lab test for mutations for NIH that they do not test for

other clients?

Ellyn

Mom of possibly (5),

Alyssa(8), and Kate(3)

Philadelphia, PA

" Fran Bulone " <fbulone@...>

Sent by:

02/15/2006 08:34 PM

Please respond to

< >

cc:

Subject: RE: Questins

NIH does all that is needed... and more than any other lab or physician

can

do for the periodic fever disorders... in the USA!!

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

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HI ELLYN

Good morning! I know what ever lab that the NIH uses my insurance would not

ever cover that. So my doctor used oklahoma lab on my Igd level to recheck it.

Sacora

ellyn.trickey@... wrote:

Fran,

I am confused. 's tests were performed by GeneDx, which I believe

is the same lab used by NIH.

Does the same lab test for mutations for NIH that they do not test for

other clients?

Ellyn

Mom of possibly (5),

Alyssa(8), and Kate(3)

Philadelphia, PA

" Fran Bulone " <fbulone@...>

Sent by:

02/15/2006 08:34 PM

Please respond to

< >

cc:

Subject: RE: Questins

NIH does all that is needed... and more than any other lab or physician

can

do for the periodic fever disorders... in the USA!!

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

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