Re: dna, sweat tests, and npd....

[Guest guest]

I would think the nasal PD and the DNA could be ordered through any doctor

but it was Collin's Pulmonoligist who ordered them for him. Ambrey

Genetics can test for over 1000 mutions of CF. If insurance won't pay it is

about $300. The study at Hopkins is doing the same thing as Ambrey, only

because it is done under a research program it takes longer but is at no

cost.

What were the biopsies for?

As for the polyps...they are very common in CF but other drs have called it

other things such as Pseudo Tumor and retention cyst. Collin has had one

for about 2 years but it doesn't bother him so we leave it alone, but I

know some people have to have them removed.

Collin has been on Ceftin and he hated it...yuk!

Tina Mannix

Recreation Bookkeeper

City of Rockville

111 land Ave

Rockville, MD 20850

" Krystena

s " To:

cfparents >

Subject: dna,

sweat tests, and npd....

10/16/2002 03:59

PM

Please respond

to cfparents

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

[Guest guest]

With Mathews diapers they were so full and smelly greasy acidy it actually

melted the plastic elastic on the diapers. He has not had any lung infections

yet.

dna, sweat tests, and npd....

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

[Guest guest]

With Mathews diapers they were so full and smelly greasy acidy it actually

melted the plastic elastic on the diapers. He has not had any lung infections

yet.

dna, sweat tests, and npd....

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