dna, sweat tests, and npd....

October 16, 2002

I called his GI dr's office and left the nurse a voice mail. I told them that I

had been on the phone with some CF centers today (and I have). You don't wan to

tell the dr you have been hacking away at the net! haha They think you are crazy

right away!

Also, they don't like it when other parents think they are smarter than they

are. So, I let them think that the CF centers suggested the DNA and Nasal Pot.

Dif. test.

Let's all hope in the end, it is all neg. but..... I do not want him to be much

worse off a few years from now and then find out it really is CF!

I have read nearly 3000 old emails and the evidence is overwhelming of those who

can have a normal sweat test!

Ok.... who orders the NPD test? GI? or Plumonary? etc..

Does the GI order the blood DNA study? Where is the best place to send the DNA

to?

I don't see how Caden's pancreatic enzymes could be normal considering the

amount of oil he passes but stranger things have happened, I guess.

They done like 6 or 8 biopsies! Have you ever heard of them taking so many!?

Poor thing is so sore inside. Every time he eats something, it hurts as it goes

down in the chest area.

About these polyps, what does a polyp look like?

His ped. called it something else.. Like something that flares up with infection

and she said you don't want to remove that.

Of course she DID NOT look in his nose, she just based that on what I was

describing when I told her that I thought his adenoids were swollen.

We are going to an Allergist Friday to rule out Allergies.

OH, I just picked up Caden's 4th Anitbiotic called Ceftin.. Heard of it?

His ped actually ordered a CT of his sinuses today! but it isn't until Nov. 1st!

I think she did that on purpose to see if this antibiotic helped because she

said she would schedule it and if it cleared up, then we could always cancel it!

ha

She really is in the cold though. We have only seen her since April of this

year. She doesn't know how chronic this is.

Well, thanks so much for your support!

Krystena s

mom to:

Caden 4 yrs Glutaric Aciduria type II

10 yrs (half sibling) -Diabetic

Warren 7yrs- (half sibling) Not tested

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