sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

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valigirl21

Guest
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Yes This sounds familiar. My son is being dx based on his symptoms. His sweat chloride is 43; its what they call "borderline." He did have the genetics testing though, but they were negative. Still...he is pancreatic insufficient, and has chronic lung issues. I'm not sure what the fecal elastase is for, but my son had that to as part of a berage(spelling?) of tests. Have you applied for Medicaid or other state funded health insurance for your husband. Seems to me that he would qualify. It would pay for all the testing and treatment that needs to be done. Just something to consider, as treatment, preventative treatment is extrtemely important. Welcome to the site anyway and I hope things work out for ya'll. You came to a good place.
 
V

valigirl21

Guest
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Yes This sounds familiar. My son is being dx based on his symptoms. His sweat chloride is 43; its what they call "borderline." He did have the genetics testing though, but they were negative. Still...he is pancreatic insufficient, and has chronic lung issues. I'm not sure what the fecal elastase is for, but my son had that to as part of a berage(spelling?) of tests. Have you applied for Medicaid or other state funded health insurance for your husband. Seems to me that he would qualify. It would pay for all the testing and treatment that needs to be done. Just something to consider, as treatment, preventative treatment is extrtemely important. Welcome to the site anyway and I hope things work out for ya'll. You came to a good place.
 
V

valigirl21

Guest
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Yes This sounds familiar. My son is being dx based on his symptoms. His sweat chloride is 43; its what they call "borderline." He did have the genetics testing though, but they were negative. Still...he is pancreatic insufficient, and has chronic lung issues. I'm not sure what the fecal elastase is for, but my son had that to as part of a berage(spelling?) of tests. Have you applied for Medicaid or other state funded health insurance for your husband. Seems to me that he would qualify. It would pay for all the testing and treatment that needs to be done. Just something to consider, as treatment, preventative treatment is extrtemely important. Welcome to the site anyway and I hope things work out for ya'll. You came to a good place.
 
V

valigirl21

Guest
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Yes This sounds familiar. My son is being dx based on his symptoms. His sweat chloride is 43; its what they call "borderline." He did have the genetics testing though, but they were negative. Still...he is pancreatic insufficient, and has chronic lung issues. I'm not sure what the fecal elastase is for, but my son had that to as part of a berage(spelling?) of tests. Have you applied for Medicaid or other state funded health insurance for your husband. Seems to me that he would qualify. It would pay for all the testing and treatment that needs to be done. Just something to consider, as treatment, preventative treatment is extrtemely important. Welcome to the site anyway and I hope things work out for ya'll. You came to a good place.
 
V

valigirl21

Guest
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Yes This sounds familiar. My son is being dx based on his symptoms. His sweat chloride is 43; its what they call "borderline." He did have the genetics testing though, but they were negative. Still...he is pancreatic insufficient, and has chronic lung issues. I'm not sure what the fecal elastase is for, but my son had that to as part of a berage(spelling?) of tests. Have you applied for Medicaid or other state funded health insurance for your husband. Seems to me that he would qualify. It would pay for all the testing and treatment that needs to be done. Just something to consider, as treatment, preventative treatment is extrtemely important. Welcome to the site anyway and I hope things work out for ya'll. You came to a good place.
 

janddburke

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

oh yeah. been there.
at 5 months Jess was diagnosed with 'Failure to Thrive'
3 sweat tests came back negative. not just borderline, but negative. I believe all 3 were in the 40 range.
at that time she was diagnosed based on symptoms and we had her on enzymes for 5 years before discovering she was PS.
just this year we did the full panel to identify her mutations. Academic really since my husband and I had testing done around the same time we had a amnio when I was expecting my 2nd.
 

janddburke

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

oh yeah. been there.
at 5 months Jess was diagnosed with 'Failure to Thrive'
3 sweat tests came back negative. not just borderline, but negative. I believe all 3 were in the 40 range.
at that time she was diagnosed based on symptoms and we had her on enzymes for 5 years before discovering she was PS.
just this year we did the full panel to identify her mutations. Academic really since my husband and I had testing done around the same time we had a amnio when I was expecting my 2nd.
 

janddburke

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

oh yeah. been there.
at 5 months Jess was diagnosed with 'Failure to Thrive'
3 sweat tests came back negative. not just borderline, but negative. I believe all 3 were in the 40 range.
at that time she was diagnosed based on symptoms and we had her on enzymes for 5 years before discovering she was PS.
just this year we did the full panel to identify her mutations. Academic really since my husband and I had testing done around the same time we had a amnio when I was expecting my 2nd.
 

janddburke

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

oh yeah. been there.
at 5 months Jess was diagnosed with 'Failure to Thrive'
3 sweat tests came back negative. not just borderline, but negative. I believe all 3 were in the 40 range.
at that time she was diagnosed based on symptoms and we had her on enzymes for 5 years before discovering she was PS.
just this year we did the full panel to identify her mutations. Academic really since my husband and I had testing done around the same time we had a amnio when I was expecting my 2nd.
 

janddburke

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

oh yeah. been there.
<br />at 5 months Jess was diagnosed with 'Failure to Thrive'
<br />3 sweat tests came back negative. not just borderline, but negative. I believe all 3 were in the 40 range.
<br />at that time she was diagnosed based on symptoms and we had her on enzymes for 5 years before discovering she was PS.
<br />just this year we did the full panel to identify her mutations. Academic really since my husband and I had testing done around the same time we had a amnio when I was expecting my 2nd.
 

firefly65

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Now, I was told the scale is 1-60 if you test 59 or below you would be negative for CF. 60 is borderline and anything above 60 is a definate dianosis of CF. I am now being tested for chronic pancreatitis; which often comes hand in hand w/ CF. I had genetic testing and have the f08 gene and the r117h. So, although I tested 60 (borderline) the genetic testing was positive showing two c.f. genes. I now have to have my children tested. I am 42 yrs old and have had 3 prior inconclusive tests. They always tried to test me here locally with the pediatric bands that go on your arm to collect the sweat for the sweat chloride test. At least now I finally know. I just couldn't understand why they wouldn't do the genetic tests prior to now. These drs locally just drop the ball. I am now in the well respected hands of a CF specialist in Chicago, Il.
 

firefly65

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Now, I was told the scale is 1-60 if you test 59 or below you would be negative for CF. 60 is borderline and anything above 60 is a definate dianosis of CF. I am now being tested for chronic pancreatitis; which often comes hand in hand w/ CF. I had genetic testing and have the f08 gene and the r117h. So, although I tested 60 (borderline) the genetic testing was positive showing two c.f. genes. I now have to have my children tested. I am 42 yrs old and have had 3 prior inconclusive tests. They always tried to test me here locally with the pediatric bands that go on your arm to collect the sweat for the sweat chloride test. At least now I finally know. I just couldn't understand why they wouldn't do the genetic tests prior to now. These drs locally just drop the ball. I am now in the well respected hands of a CF specialist in Chicago, Il.
 

firefly65

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Now, I was told the scale is 1-60 if you test 59 or below you would be negative for CF. 60 is borderline and anything above 60 is a definate dianosis of CF. I am now being tested for chronic pancreatitis; which often comes hand in hand w/ CF. I had genetic testing and have the f08 gene and the r117h. So, although I tested 60 (borderline) the genetic testing was positive showing two c.f. genes. I now have to have my children tested. I am 42 yrs old and have had 3 prior inconclusive tests. They always tried to test me here locally with the pediatric bands that go on your arm to collect the sweat for the sweat chloride test. At least now I finally know. I just couldn't understand why they wouldn't do the genetic tests prior to now. These drs locally just drop the ball. I am now in the well respected hands of a CF specialist in Chicago, Il.
 

firefly65

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Now, I was told the scale is 1-60 if you test 59 or below you would be negative for CF. 60 is borderline and anything above 60 is a definate dianosis of CF. I am now being tested for chronic pancreatitis; which often comes hand in hand w/ CF. I had genetic testing and have the f08 gene and the r117h. So, although I tested 60 (borderline) the genetic testing was positive showing two c.f. genes. I now have to have my children tested. I am 42 yrs old and have had 3 prior inconclusive tests. They always tried to test me here locally with the pediatric bands that go on your arm to collect the sweat for the sweat chloride test. At least now I finally know. I just couldn't understand why they wouldn't do the genetic tests prior to now. These drs locally just drop the ball. I am now in the well respected hands of a CF specialist in Chicago, Il.
 

firefly65

New member
sweat test borderline, now doing fecal elastase test and sputum culture....... anyone have this experience??

Now, I was told the scale is 1-60 if you test 59 or below you would be negative for CF. 60 is borderline and anything above 60 is a definate dianosis of CF. I am now being tested for chronic pancreatitis; which often comes hand in hand w/ CF. I had genetic testing and have the f08 gene and the r117h. So, although I tested 60 (borderline) the genetic testing was positive showing two c.f. genes. I now have to have my children tested. I am 42 yrs old and have had 3 prior inconclusive tests. They always tried to test me here locally with the pediatric bands that go on your arm to collect the sweat for the sweat chloride test. At least now I finally know. I just couldn't understand why they wouldn't do the genetic tests prior to now. These drs locally just drop the ball. I am now in the well respected hands of a CF specialist in Chicago, Il.
 
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