borderline sweat test

[anonymous]

Hi,

I'm new here and was just wondering what tests they do if your child has a sweat test of 44? Do we take a watch and wait approach (for ANOTHER 7 years) or are there more tests that can definitively tell us whether he has CF or not. My son is 13 and has a lot of immune system problems (something is wrong with his immunoglobins). He is also diabetic, Type I and has (really) been sick for the better part of 7 years--you try to tell the doctors that there's something wrong but. . .

Thanks, Laura

 

[anonymous]

Hi,

I'm new here and was just wondering what tests they do if your child has a sweat test of 44? Do we take a watch and wait approach (for ANOTHER 7 years) or are there more tests that can definitively tell us whether he has CF or not. My son is 13 and has a lot of immune system problems (something is wrong with his immunoglobins). He is also diabetic, Type I and has (really) been sick for the better part of 7 years--you try to tell the doctors that there's something wrong but. . .

Thanks, Laura

 

[hlgconk]

Hi Laura,
I too am new to CF. My 6 year old was dx about two months ago and my 7 month old too has CF. It is my understanding that your sweat test is borderline (I think low) however, genetic testing will give you some knowledge that you are looking for. If your son has the genetic make-up, has a borderline sweat test and is symptomatic he may have CF.

What are is symptoms? Does his skin taste salty?
FYI, this web site has great suggestions and wonderful information. Just post it and you'll get feedback.
Good Luck, be a advocate for your son.

 

[hlgconk]

Hi Laura,
I too am new to CF. My 6 year old was dx about two months ago and my 7 month old too has CF. It is my understanding that your sweat test is borderline (I think low) however, genetic testing will give you some knowledge that you are looking for. If your son has the genetic make-up, has a borderline sweat test and is symptomatic he may have CF.

What are is symptoms? Does his skin taste salty?
FYI, this web site has great suggestions and wonderful information. Just post it and you'll get feedback.
Good Luck, be a advocate for your son.

 

[Alyssa]

Laura,

Be sure to ask for FULL GENETIC testing with Ambry or .... (help me someone... the other company) anyway, yes there are blood test (genetic) that can look for 1000 known CF gene mutations. Don?t let them just do the screening for a few (89 it think it is) of the most common genes ? ask for the most inclusive test.

You should be insistent that the genetic testing be done, because my kids sweat tests are low borderline and normal, yet genetic testing shows two CF genes.

Sweat Tests are a good, quick & cheap test (tool) but not always completely accurate all by themselves. Here are the numbers for sweat test results:

40 and below ------ normal
41-60 ------ borderline
61 and up ------ positive for CF

My daughter tested three times at 38 when she was 5 years old -- they told us she did not have CF. It wasn't until she was 13 years old with recurrent lung infections that we got a genetic test that showed both genes. She was sweat tested again (at age 15), and again was found to be 38.

My son was then tested at age 18. His sweat test was 41 and genetic testing found the same two genes as his sister's test had shown.

So "normal" and "borderline" sweat tests do not always mean no CF.

Best wishes --

 

[Alyssa]

Laura,

Be sure to ask for FULL GENETIC testing with Ambry or .... (help me someone... the other company) anyway, yes there are blood test (genetic) that can look for 1000 known CF gene mutations. Don?t let them just do the screening for a few (89 it think it is) of the most common genes ? ask for the most inclusive test.

You should be insistent that the genetic testing be done, because my kids sweat tests are low borderline and normal, yet genetic testing shows two CF genes.

Sweat Tests are a good, quick & cheap test (tool) but not always completely accurate all by themselves. Here are the numbers for sweat test results:

40 and below ------ normal
41-60 ------ borderline
61 and up ------ positive for CF

My daughter tested three times at 38 when she was 5 years old -- they told us she did not have CF. It wasn't until she was 13 years old with recurrent lung infections that we got a genetic test that showed both genes. She was sweat tested again (at age 15), and again was found to be 38.

My son was then tested at age 18. His sweat test was 41 and genetic testing found the same two genes as his sister's test had shown.

So "normal" and "borderline" sweat tests do not always mean no CF.

Best wishes --

 

[anonymous]

Thanks for answering. I don't know if his skin tastes salty--I'll have to ask him. His main symptoms are frequent pneumonia, recurrent sinus infections (I mean he has one more than he doesn't,) stomachaches/nausea, slow to heal, and he says he has "gunky" stuff in his throat all the time. We also just found out he has nasal polyps from frequent sinus infections. He has Type I diabetes as well, but I don't know if that goes along with CF although I've seen a lot of posts that talk about blood sugar problems. One thing that doesn't match is he has always been a pretty big kid--he's 5'10" and weighs about 150 lbs. He has lost 30 lbs this past year, 15 of them since October. He also has mildly raised intracranial pressure and SEVERE back pain and seizures and numbness and weakness of his legs but I don't know what that has to do with anything. Our doctor told us we are looking for "zebras" now because they know something is wrong, we just don't know what because no one disease/disorder matches exactly.

Thanks again, Laura

 

[anonymous]

Thanks for answering. I don't know if his skin tastes salty--I'll have to ask him. His main symptoms are frequent pneumonia, recurrent sinus infections (I mean he has one more than he doesn't,) stomachaches/nausea, slow to heal, and he says he has "gunky" stuff in his throat all the time. We also just found out he has nasal polyps from frequent sinus infections. He has Type I diabetes as well, but I don't know if that goes along with CF although I've seen a lot of posts that talk about blood sugar problems. One thing that doesn't match is he has always been a pretty big kid--he's 5'10" and weighs about 150 lbs. He has lost 30 lbs this past year, 15 of them since October. He also has mildly raised intracranial pressure and SEVERE back pain and seizures and numbness and weakness of his legs but I don't know what that has to do with anything. Our doctor told us we are looking for "zebras" now because they know something is wrong, we just don't know what because no one disease/disorder matches exactly.

Thanks again, Laura

 

[anonymous]

fyi - The sweat test has an accuracy of 85%. If one or more symptoms are present with a negative or borderline sweat test it would be wise to have a genetic test done.

CFRD (Cystic Fibrosis Related Diabetes) is not uncommon.

 

[anonymous]

fyi - The sweat test has an accuracy of 85%. If one or more symptoms are present with a negative or borderline sweat test it would be wise to have a genetic test done.

CFRD (Cystic Fibrosis Related Diabetes) is not uncommon.

 

[julie]

The other test for an extended mutation panel is QUEST DIAGNOSTICS LABORATORY. They are actually more credible than AMBRY and more doctors are familiar with them.

I would definately INSIST on a genetic test IMMEDIATELY!

Welcome to the site!

 

[julie]

The other test for an extended mutation panel is QUEST DIAGNOSTICS LABORATORY. They are actually more credible than AMBRY and more doctors are familiar with them.

I would definately INSIST on a genetic test IMMEDIATELY!

Welcome to the site!

 

[anonymous]

Nasal pplyps in children are often an indicator of CF. Has he ever had a throat culture? If the culture grows out pseudomonas that is also a good indicator of CF.

 

[anonymous]

Nasal pplyps in children are often an indicator of CF. Has he ever had a throat culture? If the culture grows out pseudomonas that is also a good indicator of CF.

 

[anonymous]

Hi,

No he hasn't had a throat culture before. It's been nearly impossible convincing drs to do anything up to now. Now he is sick enough and not healing and they're finally trying to figure it out.

Thanks, Laura

 

[anonymous]

Hi,

No he hasn't had a throat culture before. It's been nearly impossible convincing drs to do anything up to now. Now he is sick enough and not healing and they're finally trying to figure it out.

Thanks, Laura