Re: wont order DNA testing!

[Guest guest]

Hi Krystena,

I am absolutely with you here! So why do those morons think the NPD test was

developed? I don't need it when I have a positive sweat test, it was

especially developed to dx those patients with negative sweat tests.

But since Caden is only 4 and it's difficult to run a NPD on young children

(they have to sit quiet for at least 30 minutes with a needle in the nostril

and one in the arm) I would still opt for the DNA test. Ambry Genetics

(www.ambrygen.com) tests for all known mutations for 285 $. Compared to the

hospital bills that have already piled up to find a diagnosis this is

peanuts. And those docs still have a sick child without a proper dx, so I

can't understand why they don't do the DNA test. Yep, the probability that

Caden has CF has become much lower with the negative sweat test, but it's

obviously wrong to tell you that CF has been ruled out through that. And I

can't believe what you say about the Kentucky CF center. I would ask for a

written prove of that statement and report them to the CFF.

Strange enough, if you have searched the archive for horror dx stories, you

may have found the messages from Rojas. She said she was told the same

(no CF diagnosis without a positive sweat test) from s Hopkins in

Baltimore but when I emailed Dr. Pamela Zeitlin to verify that, Dr. Zeitlin

immediately replied that no one from s Hopkins would ever say something

like that. Rojas disappeared from the list, so I don't know how the

story ended.

There is something like " CF-like disease " . s Hopkins has just fnished a

study with 9 (not sure about the number) patients, who all have CF like

symptoms (especially digestive problems) but even a complete gene sequencing

couldn't find any mutation in the CFTR gene. Tricia from New York had her

son in that study. She is on no mail but if you search the archive

waaayy back for Tricia, and New York you'll find her. The addy hasn't

changed.

Hope you'll find a diagnosis before you have killed one of those jerks :-))

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

wont order DNA testing!

> Well,

>

> Now I am fuming!

>

> They will NOT order DNA testing nor the NPD test for Caden!

>

> Not with a normal sweat test!

>

> Now what? She said that his ped. could order it..

>

> Now, I will have to convince her to do it.

>

> I am so aggravated.

>

>

> help!

>

> Krystena s

[Guest guest]

Krystena --

Why don't you and your Husband get tested to see if you are carriers? Its a

round about way but might help.

Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!

[Guest guest]

Krystena --

Why don't you and your Husband get tested to see if you are carriers? Its a

round about way but might help.

Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!

[Guest guest]

Krystena --

Why don't you and your Husband get tested to see if you are carriers? Its a

round about way but might help.

Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!