Re: Re: /Orenstein, sweat test/ANNA

[Guest guest]

I LOVE that quote! Thank you, !

n Rojas whose sweat test nearly equals her weight!!!!

Re: WE ARE HOME

> Rhonda,

> This is a quote from one of the most trusted sources of cystic

> fibrosis literature, M. Orenstein's " Cystic Fibrosis A Guide

> for Patient and Family " copywright 1997, and here is what he says

> about the sweat test. It is done on both arms to make ensure that

> enough sweat is collected, most CF accredited centers do it on both

> arms.

>

>

> " The sweat test has been the gold standard " for diagnosing CF for

> over 40 years and when done by an experienced, reliable laboratory,

> the sweat test is still the best test for CF. There are no false

> positives (people who test for CF, but don't really have it) and no

> false negatives (people whose tests say they have it, but don't

> really have it). Once a test result is positive, it is always

> positive. Nothing changes as a patient grows older. And sweat test

> values do not vary when the patients have colds or other temporary

> illnesses. I need to stress the importance of the laboratory doing

> the tests. Most CF centers find that CF has been misdiagnosed in

> about half of all of the patients they see who have been tested by

> inexperienced laboratory personel. Sweat test laboratories associated

> with an approved CF center, have passed accreditation by the national

> CF Foundation, and can be trusted. Many other laboratories are also

> good, but it is harder to know about those not in CF Centers. so goes

> on to say about unusual cases: it may be difficult or impossible to

> make the diagnosis in a usual way. Examples might be a patient who

> doesn't make enough sweat to analyze or someone whose sweat test

> results are in the " gray zone " - neither clearly negative nor clearly

> positive - AND genetic testing has been inconclusive. The physician

> then must consider the WHOLE picture - what are the patient's lungs

> like? What germs grow on throat cultures? Does he or she have

> abnormal sinuses on x-rays? Are the stools abnormal? Is there finger

> clubbing? Occasionally the physician and the family will decide that

> that the wisest course of action is 1) to accept that for the time

> being that a definite diagnosis can not be made, and 2) to decide to

> treat the child as if they HAVE CF. This makes sense because the

> treatments are not harmful for someone who doesn't have CF but NOT

> getting the treatments could be very harmful for someone who does

> have CF.

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> Rhonda,

> >

> > I didn't know that Joradn was in the hospital. Has the Columbus

> > clinic done a CT scan of Jordan's lungs? Abby had repeat

> > pneumonias. That is why they tested her for CF. You and Jordan

> have

> > really been through a lot. Please keep us posted. If you come back

> > to Columbus, let me know. I am going to be out of town a lot

> between

> > now and the end of the year, but if I'm here I'd like to meet you.

> >

> > Gale

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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