worried mother

A

Alyssa

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

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



Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.</end quote></div>





no no no!



some are infants/children.



get the genetic test without question!!!!!</end quote></div>

Whoops - sorry for the confusion -- I was referring to sweat test numbers, not age
 
A

Alyssa

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

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



Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.</end quote></div>





no no no!



some are infants/children.



get the genetic test without question!!!!!</end quote></div>

Whoops - sorry for the confusion -- I was referring to sweat test numbers, not age
 
A

Alyssa

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

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



Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.</end quote>





no no no!



some are infants/children.



get the genetic test without question!!!!!</end quote>

Whoops - sorry for the confusion -- I was referring to sweat test numbers, not age
 
A

Alyssa

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

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



Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.</end quote>





no no no!



some are infants/children.



get the genetic test without question!!!!!</end quote>

Whoops - sorry for the confusion -- I was referring to sweat test numbers, not age
 
O

okok

New member
Just thought i would add newborn screens are typically done with IRT (immuno reactive trypsingen) levels NOT mutational analysis. Elevated IRT levels are an indication that the newborn could have CF. False postives are generally more common with this screen (9.5 false positives to every 1 true positive up to 25 false positves to every true positive) then false negatives because newborns are normally born with elevated IRT and it decreases over time. Also other disorders can cause elevated IRT. However as with any labrotory test false negatives are possible (in this case usually due to lab error). Also the screen is usually designed to be sufficiently sensitive so it does catch newborns with elevated IRT but not necessarily "abnormally" elevated IRT, if that makes any sense. Some states, in response to elevated IRT, do use the dried blood spot for mutational testing. Other states require two instances of elevated IRT levels prior to proceeding with CF testing: one elevated IRT at birth and another elevated IRT two weeks later. States which use elevated IRT in conjunction with genetic testing automatically (usually just the delf508 mutation) are more likely to have a higher false negative rate since there is a tendency to assume no delta f508 mutation means the elevated IRT was a false alarm. I think though they do usually follow up with more testing to avoid this.... (another elevated IRT test at least.)
 
O

okok

New member
Just thought i would add newborn screens are typically done with IRT (immuno reactive trypsingen) levels NOT mutational analysis. Elevated IRT levels are an indication that the newborn could have CF. False postives are generally more common with this screen (9.5 false positives to every 1 true positive up to 25 false positves to every true positive) then false negatives because newborns are normally born with elevated IRT and it decreases over time. Also other disorders can cause elevated IRT. However as with any labrotory test false negatives are possible (in this case usually due to lab error). Also the screen is usually designed to be sufficiently sensitive so it does catch newborns with elevated IRT but not necessarily "abnormally" elevated IRT, if that makes any sense. Some states, in response to elevated IRT, do use the dried blood spot for mutational testing. Other states require two instances of elevated IRT levels prior to proceeding with CF testing: one elevated IRT at birth and another elevated IRT two weeks later. States which use elevated IRT in conjunction with genetic testing automatically (usually just the delf508 mutation) are more likely to have a higher false negative rate since there is a tendency to assume no delta f508 mutation means the elevated IRT was a false alarm. I think though they do usually follow up with more testing to avoid this.... (another elevated IRT test at least.)
 
O

okok

New member
Just thought i would add newborn screens are typically done with IRT (immuno reactive trypsingen) levels NOT mutational analysis. Elevated IRT levels are an indication that the newborn could have CF. False postives are generally more common with this screen (9.5 false positives to every 1 true positive up to 25 false positves to every true positive) then false negatives because newborns are normally born with elevated IRT and it decreases over time. Also other disorders can cause elevated IRT. However as with any labrotory test false negatives are possible (in this case usually due to lab error). Also the screen is usually designed to be sufficiently sensitive so it does catch newborns with elevated IRT but not necessarily "abnormally" elevated IRT, if that makes any sense. Some states, in response to elevated IRT, do use the dried blood spot for mutational testing. Other states require two instances of elevated IRT levels prior to proceeding with CF testing: one elevated IRT at birth and another elevated IRT two weeks later. States which use elevated IRT in conjunction with genetic testing automatically (usually just the delf508 mutation) are more likely to have a higher false negative rate since there is a tendency to assume no delta f508 mutation means the elevated IRT was a false alarm. I think though they do usually follow up with more testing to avoid this.... (another elevated IRT test at least.)
 
O

okok

New member
Just thought i would add newborn screens are typically done with IRT (immuno reactive trypsingen) levels NOT mutational analysis. Elevated IRT levels are an indication that the newborn could have CF. False postives are generally more common with this screen (9.5 false positives to every 1 true positive up to 25 false positves to every true positive) then false negatives because newborns are normally born with elevated IRT and it decreases over time. Also other disorders can cause elevated IRT. However as with any labrotory test false negatives are possible (in this case usually due to lab error). Also the screen is usually designed to be sufficiently sensitive so it does catch newborns with elevated IRT but not necessarily "abnormally" elevated IRT, if that makes any sense. Some states, in response to elevated IRT, do use the dried blood spot for mutational testing. Other states require two instances of elevated IRT levels prior to proceeding with CF testing: one elevated IRT at birth and another elevated IRT two weeks later. States which use elevated IRT in conjunction with genetic testing automatically (usually just the delf508 mutation) are more likely to have a higher false negative rate since there is a tendency to assume no delta f508 mutation means the elevated IRT was a false alarm. I think though they do usually follow up with more testing to avoid this.... (another elevated IRT test at least.)
 
O

okok

New member
Just thought i would add newborn screens are typically done with IRT (immuno reactive trypsingen) levels NOT mutational analysis. Elevated IRT levels are an indication that the newborn could have CF. False postives are generally more common with this screen (9.5 false positives to every 1 true positive up to 25 false positves to every true positive) then false negatives because newborns are normally born with elevated IRT and it decreases over time. Also other disorders can cause elevated IRT. However as with any labrotory test false negatives are possible (in this case usually due to lab error). Also the screen is usually designed to be sufficiently sensitive so it does catch newborns with elevated IRT but not necessarily "abnormally" elevated IRT, if that makes any sense. Some states, in response to elevated IRT, do use the dried blood spot for mutational testing. Other states require two instances of elevated IRT levels prior to proceeding with CF testing: one elevated IRT at birth and another elevated IRT two weeks later. States which use elevated IRT in conjunction with genetic testing automatically (usually just the delf508 mutation) are more likely to have a higher false negative rate since there is a tendency to assume no delta f508 mutation means the elevated IRT was a false alarm. I think though they do usually follow up with more testing to avoid this.... (another elevated IRT test at least.)
 
O

okok

New member
Just thought i would add newborn screens are typically done with IRT (immuno reactive trypsingen) levels NOT mutational analysis. Elevated IRT levels are an indication that the newborn could have CF. False postives are generally more common with this screen (9.5 false positives to every 1 true positive up to 25 false positves to every true positive) then false negatives because newborns are normally born with elevated IRT and it decreases over time. Also other disorders can cause elevated IRT. However as with any labrotory test false negatives are possible (in this case usually due to lab error). Also the screen is usually designed to be sufficiently sensitive so it does catch newborns with elevated IRT but not necessarily "abnormally" elevated IRT, if that makes any sense. Some states, in response to elevated IRT, do use the dried blood spot for mutational testing. Other states require two instances of elevated IRT levels prior to proceeding with CF testing: one elevated IRT at birth and another elevated IRT two weeks later. States which use elevated IRT in conjunction with genetic testing automatically (usually just the delf508 mutation) are more likely to have a higher false negative rate since there is a tendency to assume no delta f508 mutation means the elevated IRT was a false alarm. I think though they do usually follow up with more testing to avoid this.... (another elevated IRT test at least.)
 
P

professormom

New member
Just an update - our sweat test came back very promising. His chloride level was 7 and his sodium level was 13. I feel pretty confident that he doesn't have CF with these numbers, but when I do his follow-up visit with the pediatrician I will ask about further testing. I feel very relieved and confident at this point. I want to than you all for your support and kind, knowledegable words. After just one weekend of having this worry - I admire all of you so much for your courage and love. I plan to be a life-long contributor to the CF foundation.

Good luck to you all.

Peace, nora
 
P

professormom

New member
Just an update - our sweat test came back very promising. His chloride level was 7 and his sodium level was 13. I feel pretty confident that he doesn't have CF with these numbers, but when I do his follow-up visit with the pediatrician I will ask about further testing. I feel very relieved and confident at this point. I want to than you all for your support and kind, knowledegable words. After just one weekend of having this worry - I admire all of you so much for your courage and love. I plan to be a life-long contributor to the CF foundation.

Good luck to you all.

Peace, nora
 
P

professormom

New member
Just an update - our sweat test came back very promising. His chloride level was 7 and his sodium level was 13. I feel pretty confident that he doesn't have CF with these numbers, but when I do his follow-up visit with the pediatrician I will ask about further testing. I feel very relieved and confident at this point. I want to than you all for your support and kind, knowledegable words. After just one weekend of having this worry - I admire all of you so much for your courage and love. I plan to be a life-long contributor to the CF foundation.

Good luck to you all.

Peace, nora
 
P

professormom

New member
Just an update - our sweat test came back very promising. His chloride level was 7 and his sodium level was 13. I feel pretty confident that he doesn't have CF with these numbers, but when I do his follow-up visit with the pediatrician I will ask about further testing. I feel very relieved and confident at this point. I want to than you all for your support and kind, knowledegable words. After just one weekend of having this worry - I admire all of you so much for your courage and love. I plan to be a life-long contributor to the CF foundation.

Good luck to you all.

Peace, nora
 
P

professormom

New member
Just an update - our sweat test came back very promising. His chloride level was 7 and his sodium level was 13. I feel pretty confident that he doesn't have CF with these numbers, but when I do his follow-up visit with the pediatrician I will ask about further testing. I feel very relieved and confident at this point. I want to than you all for your support and kind, knowledegable words. After just one weekend of having this worry - I admire all of you so much for your courage and love. I plan to be a life-long contributor to the CF foundation.

Good luck to you all.

Peace, nora
 
P

professormom

New member
Just an update - our sweat test came back very promising. His chloride level was 7 and his sodium level was 13. I feel pretty confident that he doesn't have CF with these numbers, but when I do his follow-up visit with the pediatrician I will ask about further testing. I feel very relieved and confident at this point. I want to than you all for your support and kind, knowledegable words. After just one weekend of having this worry - I admire all of you so much for your courage and love. I plan to be a life-long contributor to the CF foundation.

Good luck to you all.

Peace, nora
 
M

Mommafirst

Guest
That's wonderful news, Nora. I agree, those are VERY promising results. I doubt the doctor would even agree to genetic testing with those numbers.
 
M

Mommafirst

Guest
That's wonderful news, Nora. I agree, those are VERY promising results. I doubt the doctor would even agree to genetic testing with those numbers.
 
M

Mommafirst

Guest
That's wonderful news, Nora. I agree, those are VERY promising results. I doubt the doctor would even agree to genetic testing with those numbers.
 
M

Mommafirst

Guest
That's wonderful news, Nora. I agree, those are VERY promising results. I doubt the doctor would even agree to genetic testing with those numbers.
 
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