Borderline Sweat Test Result

[anonymous]

My 14 year old son had a sweat test yesterday and the result was a 54.
I do not know what a borderline result means?
Does any one know?

 

[Mommafirst]

My daughter had a borderline sweat test -- two actually.  Her
scores were 52 and 45. Honestly, what the borderline means to me is
living in limbo for longer than anyone should..  From all I
read, there are a few things that might elevate the sweat chloride
level that aren't associated with CF.  But my daughter's
doctor implied that these borderline numbers made them
"suspicious" of CF.<br>
<br>
I truly understand the frustration and fear associated with testing
for CF -- I'm sure all the parents of CFers on this site can.
 Not knowing is awful and scary, but I do feel that once a
diagnosis is given it gets a little easier (different challenges).
  I hope that your daughters results are a fluke and that
she doesn't have CF.  <br>
<br>
Oh and one more thing, the numbers don't have any bearing on the
severity of the case of CF.  I was under the false impression
that since my daughter's numbers were borderline that it would mean
she would have a very mild case.  She DOES (so far) have a
mild case, but apparently there is no correlation between sweat
salt content and CF severity.<br>
<br>
I hope this helps!  Best of luck!

 

[anonymous]

There are many cases of people with borderline results who do not have CF. Of course, there are also many cases of those with borderline or even negative results who do have CF. The next step in my opinion, is to (1) repeat the sweat test, and (2) have a genetic test done. Also, please bear in mind that since not all mutations causing cf have been identified yet, it is possible to have a negative genetic test and still have cf. Also, not all genetic tests are created equal. Many genetic tests are just "screenings". That is, they only identify the most common mutations for a set population (in the US, caucasians). The most comprehensive tests are the extended anylysis/amplified versions from Ambry or Quest Diagnostics. More than likely your physician and insurance company will insist that your dd first have one of the cheaper genetic screening tests like Genzyme, Quest, and several others offer. Unfortunately, there is no way to completely rule out CF right now. The best you can do is exhaust all testing means. To me, that would mean, 2 negative sweat tests, a negative extended genetic panel from Quest or Ambry, and possibly a negative NPD (nasal potential difference test). Just out of curiosity, what are your dd's symptoms? Why was she tested? Lastly, is there any family history of CF? (Not that that means anything since in most cases there wasn't a family history prior to diagnosis.) Good luck!! HTH.
Mel

 

[anonymous]

Thank you for your responses:

My Son has had pancreatitis since July. His enzyme levels were greatly elevated. Since the levels were going down every week, our doctor thought that it was probably just acute pancreatitis. Two weeks ago however his enzyme levels started to go up again having never reached normal. One of the tests the doctor ordered was the sweat test. We were devastated to hear that he scored a 54 which we were told was borderline.
My son is a cross country runner and has never had breathing problems. If it turns out that he has C.F. are we to expect the same prognosis as if he has had breathing symptoms and difficulties his whole life.
We now had an appointment for another test at a CF center but that is in two weeks. That seems like a very long time to wait. My wife and I are both in shock.

Neither my wife or I have any family history of CF

 

[anonymous]

I think it's very wise to seek diagnosis through a CF center. As far as prognosis, it's really difficult to predict. They do however, know that the longer you can keep the lungs healthy, and the more weight you can keep on, the better the long-term prognosis. Does your DS have any weight problems? Sorry for calling him a DD earlier<img src="i/expressions/face-icon-small-blush.gif" border="0">!
Please keep us updated.
Mel

 

[anonymous]

He is 5'8" and weighed 115 before July. He now weighs 100 lb. due to the pancreatitis.
He has never shown any signs of being ill before this summer.

 

[thelizardqueen]

I would also suggest getting a blood test done - a DNA test. THere is a such thing as a false negative, but not a false positive with sweat tests, and borderline tests are also iffy. Some people don't get lung issues till they'r a lot older, so like Mel said - try to keep his weight up, keep his lunngs clear as long as possible.

 

[AttyMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>

I would also suggest getting a blood test done - a DNA test. </end quote></div>

I agree with Liz...
I am one of the "borderline" patients. I was tested 5 times prior to the discovery of the CF genes -- always borderline in the low 40's. With participation in a voluntary cheek swab DNA study of borderline patients, I got a phone call 2 years later with the diagnosis -- at the age of 25.
DNA -- at a CF clinic -- is definitely the way to go.