New Mom- help understanding dx of CF

pypersmom

New member
Hello- my month old daughter had two abnormal newborn screenings with slightly high IRT levles detecting CF her first score was 128 with 90 being the cutoff for normal and the second blood draw she scored a 60 with the cutoff for normal 50. Our pediatrician then ordered the sweat chloride test, they called and said it was normal, her score was 27.
Our pediatrician still suggested we have genetic testing done now to confirm the sweat chloride or another one performed in six months. Even though it was normal. I don't understand why, as we were told the sweat chloride is the golden standard for dx CF.
Please help
 

pypersmom

New member
Hello- my month old daughter had two abnormal newborn screenings with slightly high IRT levles detecting CF her first score was 128 with 90 being the cutoff for normal and the second blood draw she scored a 60 with the cutoff for normal 50. Our pediatrician then ordered the sweat chloride test, they called and said it was normal, her score was 27.
Our pediatrician still suggested we have genetic testing done now to confirm the sweat chloride or another one performed in six months. Even though it was normal. I don't understand why, as we were told the sweat chloride is the golden standard for dx CF.
Please help
 

pypersmom

New member
Hello- my month old daughter had two abnormal newborn screenings with slightly high IRT levles detecting CF her first score was 128 with 90 being the cutoff for normal and the second blood draw she scored a 60 with the cutoff for normal 50. Our pediatrician then ordered the sweat chloride test, they called and said it was normal, her score was 27.
Our pediatrician still suggested we have genetic testing done now to confirm the sweat chloride or another one performed in six months. Even though it was normal. I don't understand why, as we were told the sweat chloride is the golden standard for dx CF.
Please help
 

pypersmom

New member
Hello- my month old daughter had two abnormal newborn screenings with slightly high IRT levles detecting CF her first score was 128 with 90 being the cutoff for normal and the second blood draw she scored a 60 with the cutoff for normal 50. Our pediatrician then ordered the sweat chloride test, they called and said it was normal, her score was 27.
Our pediatrician still suggested we have genetic testing done now to confirm the sweat chloride or another one performed in six months. Even though it was normal. I don't understand why, as we were told the sweat chloride is the golden standard for dx CF.
Please help
 

pypersmom

New member
Hello- my month old daughter had two abnormal newborn screenings with slightly high IRT levles detecting CF her first score was 128 with 90 being the cutoff for normal and the second blood draw she scored a 60 with the cutoff for normal 50. Our pediatrician then ordered the sweat chloride test, they called and said it was normal, her score was 27.
Our pediatrician still suggested we have genetic testing done now to confirm the sweat chloride or another one performed in six months. Even though it was normal. I don't understand why, as we were told the sweat chloride is the golden standard for dx CF.
Please help
 

paysmom

New member
sweet test is the golden test but nothing is perfect. my son had a normal sweet test the first time to. he now has 2 positive tests and both genes have been identified. it is all alot to take in at first but it gets easier to understand as time goes by. i hope everything goes good for you guys.
 

paysmom

New member
sweet test is the golden test but nothing is perfect. my son had a normal sweet test the first time to. he now has 2 positive tests and both genes have been identified. it is all alot to take in at first but it gets easier to understand as time goes by. i hope everything goes good for you guys.
 

paysmom

New member
sweet test is the golden test but nothing is perfect. my son had a normal sweet test the first time to. he now has 2 positive tests and both genes have been identified. it is all alot to take in at first but it gets easier to understand as time goes by. i hope everything goes good for you guys.
 

paysmom

New member
sweet test is the golden test but nothing is perfect. my son had a normal sweet test the first time to. he now has 2 positive tests and both genes have been identified. it is all alot to take in at first but it gets easier to understand as time goes by. i hope everything goes good for you guys.
 

paysmom

New member
sweet test is the golden test but nothing is perfect. my son had a normal sweet test the first time to. he now has 2 positive tests and both genes have been identified. it is all alot to take in at first but it gets easier to understand as time goes by. i hope everything goes good for you guys.
 
M

Mommafirst

Guest
I think getting the genetic test is the best idea. There are still false negatives with the sweat test (much fewer false positive). It would be better to get a concrete rule out of CF IMO.
 
M

Mommafirst

Guest
I think getting the genetic test is the best idea. There are still false negatives with the sweat test (much fewer false positive). It would be better to get a concrete rule out of CF IMO.
 
M

Mommafirst

Guest
I think getting the genetic test is the best idea. There are still false negatives with the sweat test (much fewer false positive). It would be better to get a concrete rule out of CF IMO.
 
M

Mommafirst

Guest
I think getting the genetic test is the best idea. There are still false negatives with the sweat test (much fewer false positive). It would be better to get a concrete rule out of CF IMO.
 
M

Mommafirst

Guest
I think getting the genetic test is the best idea. There are still false negatives with the sweat test (much fewer false positive). It would be better to get a concrete rule out of CF IMO.
 

Alyssa

New member
Be very thankful that someone is pursuing the genetic testing! My kids have a normal sweat test numbers but genetic testing shows they have two very common CF genes. No sweat testing is not always the best way to diagnose. My daughter was misdiagnosed for 8 years because nobody suggested genetic testing after a normal sweat test number.



Please read my full story on my blog page
 

Alyssa

New member
Be very thankful that someone is pursuing the genetic testing! My kids have a normal sweat test numbers but genetic testing shows they have two very common CF genes. No sweat testing is not always the best way to diagnose. My daughter was misdiagnosed for 8 years because nobody suggested genetic testing after a normal sweat test number.



Please read my full story on my blog page
 

Alyssa

New member
Be very thankful that someone is pursuing the genetic testing! My kids have a normal sweat test numbers but genetic testing shows they have two very common CF genes. No sweat testing is not always the best way to diagnose. My daughter was misdiagnosed for 8 years because nobody suggested genetic testing after a normal sweat test number.



Please read my full story on my blog page
 

Alyssa

New member
Be very thankful that someone is pursuing the genetic testing! My kids have a normal sweat test numbers but genetic testing shows they have two very common CF genes. No sweat testing is not always the best way to diagnose. My daughter was misdiagnosed for 8 years because nobody suggested genetic testing after a normal sweat test number.



Please read my full story on my blog page
 

Alyssa

New member
Be very thankful that someone is pursuing the genetic testing! My kids have a normal sweat test numbers but genetic testing shows they have two very common CF genes. No sweat testing is not always the best way to diagnose. My daughter was misdiagnosed for 8 years because nobody suggested genetic testing after a normal sweat test number.



Please read my full story on my blog page
 
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