Basically, my son is two and exhibits a lot of the symptoms for CF. He was recently hospitalized with sinusitis and a mastoid infection due to his sinuses not draining...this was what finally convinced the doctor that it was time to screen for CF. I have read a lot on CF, and it seems like the sweat test is most used, but there are a lot of people who get a normal sweat test, and then later (after genetic testing) find out they do have it. With all his symptoms, it seems that a sweat test is kind of like using "the middle man." Is it worth it to bypass the sweat test and go straight to the genetic testing?
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how accurate are sweat tests?
- Thread starter jam0913
- Start date
Basically, my son is two and exhibits a lot of the symptoms for CF. He was recently hospitalized with sinusitis and a mastoid infection due to his sinuses not draining...this was what finally convinced the doctor that it was time to screen for CF. I have read a lot on CF, and it seems like the sweat test is most used, but there are a lot of people who get a normal sweat test, and then later (after genetic testing) find out they do have it. With all his symptoms, it seems that a sweat test is kind of like using "the middle man." Is it worth it to bypass the sweat test and go straight to the genetic testing?
Basically, my son is two and exhibits a lot of the symptoms for CF. He was recently hospitalized with sinusitis and a mastoid infection due to his sinuses not draining...this was what finally convinced the doctor that it was time to screen for CF. I have read a lot on CF, and it seems like the sweat test is most used, but there are a lot of people who get a normal sweat test, and then later (after genetic testing) find out they do have it. With all his symptoms, it seems that a sweat test is kind of like using "the middle man." Is it worth it to bypass the sweat test and go straight to the genetic testing?
In our case, it wasn't accurate at all. DS's came back as normal -- 32. Fortunately, one of the other doctors at the hospital ordered up a blood test on a hunch and it came back CF. So we began treatment -- chest physiotherapy, digestive enzymes -- immediately.
In our case, it wasn't accurate at all. DS's came back as normal -- 32. Fortunately, one of the other doctors at the hospital ordered up a blood test on a hunch and it came back CF. So we began treatment -- chest physiotherapy, digestive enzymes -- immediately.
In our case, it wasn't accurate at all. DS's came back as normal -- 32. Fortunately, one of the other doctors at the hospital ordered up a blood test on a hunch and it came back CF. So we began treatment -- chest physiotherapy, digestive enzymes -- immediately.
M
Mommafirst
Guest
I think any child with symptoms should be both sweat tested and then genetically tested. My daughter only had one symptom (meconium illeus at birth) and when she got 2 borderline sweats our pulm went right to genetic testing. Good luck!!
M
Mommafirst
Guest
I think any child with symptoms should be both sweat tested and then genetically tested. My daughter only had one symptom (meconium illeus at birth) and when she got 2 borderline sweats our pulm went right to genetic testing. Good luck!!
M
Mommafirst
Guest
I think any child with symptoms should be both sweat tested and then genetically tested. My daughter only had one symptom (meconium illeus at birth) and when she got 2 borderline sweats our pulm went right to genetic testing. Good luck!!
I wouldn't bypass the sweat test, but I would have a genetic test no matter what the sweat test showed. My daughter had a positive sweat test, but only showed one mutation on genetics. It was the combo. of the two tests that enabled the docs. to give her a diagnosis of cf. If neither test shows cf you should consider what else could be causing such illness as it is not normal for a child to be that sick.
I wouldn't bypass the sweat test, but I would have a genetic test no matter what the sweat test showed. My daughter had a positive sweat test, but only showed one mutation on genetics. It was the combo. of the two tests that enabled the docs. to give her a diagnosis of cf. If neither test shows cf you should consider what else could be causing such illness as it is not normal for a child to be that sick.
I wouldn't bypass the sweat test, but I would have a genetic test no matter what the sweat test showed. My daughter had a positive sweat test, but only showed one mutation on genetics. It was the combo. of the two tests that enabled the docs. to give her a diagnosis of cf. If neither test shows cf you should consider what else could be causing such illness as it is not normal for a child to be that sick.
I agree with samsmom, don't bypass the sweat test. When preformed by experienced lab techs and when the results are interpreted properly it can be very infomative. Especially in cases where two mutations cannot be detected. If your child has a sweat chloride of above 30, seek out genetic testing. It can be normal for adults to have sweat chloride levels above 30 or 40 but most small childern do not have sweat chloride above 30.
I agree with samsmom, don't bypass the sweat test. When preformed by experienced lab techs and when the results are interpreted properly it can be very infomative. Especially in cases where two mutations cannot be detected. If your child has a sweat chloride of above 30, seek out genetic testing. It can be normal for adults to have sweat chloride levels above 30 or 40 but most small childern do not have sweat chloride above 30.
I agree with samsmom, don't bypass the sweat test. When preformed by experienced lab techs and when the results are interpreted properly it can be very infomative. Especially in cases where two mutations cannot be detected. If your child has a sweat chloride of above 30, seek out genetic testing. It can be normal for adults to have sweat chloride levels above 30 or 40 but most small childern do not have sweat chloride above 30.
cosmokramer
New member
I wouldn't say that sweat test are unreliable. I think they should be the first step, we had two sweat tests done, the first one only had enough sweat from one arm and that was 28. The second one the numbers were 28 and 36. Kendall was less then three weeks old at the time. Yes the numbers are technically negative, but higher then what the doctor would expect from someone who definetly doesn't have CF. So because the doctor expected lower numbers she then ordered the genetic testing. My husband and I both had screening done to confirm that we both were carriers and of course we were. We found out that my mutation was very rare and had genetic screening done on me, my husband has Delta F508, which just a simple blood test can show that mutation.
If your babies numbers do come back high, I would then push for genetic screening. The test is very expensive but having the sweat test results should help the insurance company see that the test is needed.
If your babies numbers do come back high, I would then push for genetic screening. The test is very expensive but having the sweat test results should help the insurance company see that the test is needed.
cosmokramer
New member
I wouldn't say that sweat test are unreliable. I think they should be the first step, we had two sweat tests done, the first one only had enough sweat from one arm and that was 28. The second one the numbers were 28 and 36. Kendall was less then three weeks old at the time. Yes the numbers are technically negative, but higher then what the doctor would expect from someone who definetly doesn't have CF. So because the doctor expected lower numbers she then ordered the genetic testing. My husband and I both had screening done to confirm that we both were carriers and of course we were. We found out that my mutation was very rare and had genetic screening done on me, my husband has Delta F508, which just a simple blood test can show that mutation.
If your babies numbers do come back high, I would then push for genetic screening. The test is very expensive but having the sweat test results should help the insurance company see that the test is needed.
If your babies numbers do come back high, I would then push for genetic screening. The test is very expensive but having the sweat test results should help the insurance company see that the test is needed.
cosmokramer
New member
I wouldn't say that sweat test are unreliable. I think they should be the first step, we had two sweat tests done, the first one only had enough sweat from one arm and that was 28. The second one the numbers were 28 and 36. Kendall was less then three weeks old at the time. Yes the numbers are technically negative, but higher then what the doctor would expect from someone who definetly doesn't have CF. So because the doctor expected lower numbers she then ordered the genetic testing. My husband and I both had screening done to confirm that we both were carriers and of course we were. We found out that my mutation was very rare and had genetic screening done on me, my husband has Delta F508, which just a simple blood test can show that mutation.
If your babies numbers do come back high, I would then push for genetic screening. The test is very expensive but having the sweat test results should help the insurance company see that the test is needed.
If your babies numbers do come back high, I would then push for genetic screening. The test is very expensive but having the sweat test results should help the insurance company see that the test is needed.
Ok I have a question on this as well. I am 26 and had a sweat test and genetic testing due to my daughter being diagnosed with CF and me having many of the sypmptms. My sweat test came back 66 and 74 i think, and my genetic testing showed one mutation and an unknown that was not normal. I have never been able to gain weight had asthma all of my life and keep pneumonia, yet the doctors told me that I did not have CF. My PFTs were in the 60% as well.
Kathie
Kathie
Ok I have a question on this as well. I am 26 and had a sweat test and genetic testing due to my daughter being diagnosed with CF and me having many of the sypmptms. My sweat test came back 66 and 74 i think, and my genetic testing showed one mutation and an unknown that was not normal. I have never been able to gain weight had asthma all of my life and keep pneumonia, yet the doctors told me that I did not have CF. My PFTs were in the 60% as well.
Kathie
Kathie