False Negative in Newborn Screening?

rose4cale

New member
I was wondering if anyone has experienced false negatives in newborn screening? Iowa has recently mandated CF screening for newborns. My niece born in Sept must have come back with normal numbers, but has been having major resp. issues as well as back and forth bowels....extremely loose and foul then blocked for a day or two. She is having a sweat test done with Cale's docs on the 8th and I keep telling her to push for genetic tests...but I was wondering how reliable the newborn screening is? Thanks
 

rose4cale

New member
I was wondering if anyone has experienced false negatives in newborn screening? Iowa has recently mandated CF screening for newborns. My niece born in Sept must have come back with normal numbers, but has been having major resp. issues as well as back and forth bowels....extremely loose and foul then blocked for a day or two. She is having a sweat test done with Cale's docs on the 8th and I keep telling her to push for genetic tests...but I was wondering how reliable the newborn screening is? Thanks
 

rose4cale

New member
I was wondering if anyone has experienced false negatives in newborn screening? Iowa has recently mandated CF screening for newborns. My niece born in Sept must have come back with normal numbers, but has been having major resp. issues as well as back and forth bowels....extremely loose and foul then blocked for a day or two. She is having a sweat test done with Cale's docs on the 8th and I keep telling her to push for genetic tests...but I was wondering how reliable the newborn screening is? Thanks
 

thefrogprincess

New member
Unfortunately false negatives happen all the time. The sweat test used to be the only meathod of diagnosis, but now genetic testing is definatly the way to go. It is SO much more reliable. Push for it, hard! She should be seen at an accredited CF center (find one on www.cff.org) and the test should be done through Ambry Genetics because they test for all the known mutations of CF (there are over 1400!). Good luck!
 

thefrogprincess

New member
Unfortunately false negatives happen all the time. The sweat test used to be the only meathod of diagnosis, but now genetic testing is definatly the way to go. It is SO much more reliable. Push for it, hard! She should be seen at an accredited CF center (find one on www.cff.org) and the test should be done through Ambry Genetics because they test for all the known mutations of CF (there are over 1400!). Good luck!
 

thefrogprincess

New member
Unfortunately false negatives happen all the time. The sweat test used to be the only meathod of diagnosis, but now genetic testing is definatly the way to go. It is SO much more reliable. Push for it, hard! She should be seen at an accredited CF center (find one on www.cff.org) and the test should be done through Ambry Genetics because they test for all the known mutations of CF (there are over 1400!). Good luck!
 

Alyssa

New member
Screenings are just indicators, not a full test..... Sweat tests are better, but can still be inconclusive or give a negative or borderline reading (see my blog) If the sweat test is anywhere in the 30's I would still go for a full genetic test.
 

Alyssa

New member
Screenings are just indicators, not a full test..... Sweat tests are better, but can still be inconclusive or give a negative or borderline reading (see my blog) If the sweat test is anywhere in the 30's I would still go for a full genetic test.
 

Alyssa

New member
Screenings are just indicators, not a full test..... Sweat tests are better, but can still be inconclusive or give a negative or borderline reading (see my blog) If the sweat test is anywhere in the 30's I would still go for a full genetic test.
 

rose4cale

New member
Thanks for your replies. Cale had terrible luck with sweat tests. False negs over and over actually. I didn't know how reliable newborn screenings were. I had heard 90% reliable, but I am a sceptic.
 

rose4cale

New member
Thanks for your replies. Cale had terrible luck with sweat tests. False negs over and over actually. I didn't know how reliable newborn screenings were. I had heard 90% reliable, but I am a sceptic.
 

rose4cale

New member
Thanks for your replies. Cale had terrible luck with sweat tests. False negs over and over actually. I didn't know how reliable newborn screenings were. I had heard 90% reliable, but I am a sceptic.
 
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