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

T

tinydancer0417

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

My husband is 25 and has all the signs and symptoms of CF, but it's tough getting diagnosis. he has struggled his whole life but no one ever put it past just sinus trouble and now his body is like breaking down. We have been to a CF clinic twice and his sweat tests have been 40 and 46. The doctors think he's a classic case but need a certain number I guess in order to diagnose it. We don't have Health Insurance at the moment b/c I'm self-employed and he's too sick to work and they don't want to run genetic panel b/c of how expensive it is.

They are doing fecal elastase test on him now. just wanted to see if any of you had the same experience and if so, if you could share it with me.
 
T

tinydancer0417

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

My husband is 25 and has all the signs and symptoms of CF, but it's tough getting diagnosis. he has struggled his whole life but no one ever put it past just sinus trouble and now his body is like breaking down. We have been to a CF clinic twice and his sweat tests have been 40 and 46. The doctors think he's a classic case but need a certain number I guess in order to diagnose it. We don't have Health Insurance at the moment b/c I'm self-employed and he's too sick to work and they don't want to run genetic panel b/c of how expensive it is.

They are doing fecal elastase test on him now. just wanted to see if any of you had the same experience and if so, if you could share it with me.
 
T

tinydancer0417

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

My husband is 25 and has all the signs and symptoms of CF, but it's tough getting diagnosis. he has struggled his whole life but no one ever put it past just sinus trouble and now his body is like breaking down. We have been to a CF clinic twice and his sweat tests have been 40 and 46. The doctors think he's a classic case but need a certain number I guess in order to diagnose it. We don't have Health Insurance at the moment b/c I'm self-employed and he's too sick to work and they don't want to run genetic panel b/c of how expensive it is.

They are doing fecal elastase test on him now. just wanted to see if any of you had the same experience and if so, if you could share it with me.
 
T

tinydancer0417

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

My husband is 25 and has all the signs and symptoms of CF, but it's tough getting diagnosis. he has struggled his whole life but no one ever put it past just sinus trouble and now his body is like breaking down. We have been to a CF clinic twice and his sweat tests have been 40 and 46. The doctors think he's a classic case but need a certain number I guess in order to diagnose it. We don't have Health Insurance at the moment b/c I'm self-employed and he's too sick to work and they don't want to run genetic panel b/c of how expensive it is.

They are doing fecal elastase test on him now. just wanted to see if any of you had the same experience and if so, if you could share it with me.
 
T

tinydancer0417

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

My husband is 25 and has all the signs and symptoms of CF, but it's tough getting diagnosis. he has struggled his whole life but no one ever put it past just sinus trouble and now his body is like breaking down. We have been to a CF clinic twice and his sweat tests have been 40 and 46. The doctors think he's a classic case but need a certain number I guess in order to diagnose it. We don't have Health Insurance at the moment b/c I'm self-employed and he's too sick to work and they don't want to run genetic panel b/c of how expensive it is.
<br />
<br />They are doing fecal elastase test on him now. just wanted to see if any of you had the same experience and if so, if you could share it with me.
 
J

Juliet

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

You might check with Ambry about financial help for the genetic testing. I too had 'normal' sweat tests but was DXd after genetic testing. In the early 1980s my sweat test was a 54 and about 2 years ago I tested 40 and 47. I have insurance though, so it's not quite the same situation. The Fecal elastase test will show if he's pancreatic insufficient or not. In my case it turns out I'm PS but had the test after my CF DX. ~Juliet
 
J

Juliet

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

You might check with Ambry about financial help for the genetic testing. I too had 'normal' sweat tests but was DXd after genetic testing. In the early 1980s my sweat test was a 54 and about 2 years ago I tested 40 and 47. I have insurance though, so it's not quite the same situation. The Fecal elastase test will show if he's pancreatic insufficient or not. In my case it turns out I'm PS but had the test after my CF DX. ~Juliet
 
J

Juliet

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

You might check with Ambry about financial help for the genetic testing. I too had 'normal' sweat tests but was DXd after genetic testing. In the early 1980s my sweat test was a 54 and about 2 years ago I tested 40 and 47. I have insurance though, so it's not quite the same situation. The Fecal elastase test will show if he's pancreatic insufficient or not. In my case it turns out I'm PS but had the test after my CF DX. ~Juliet
 
J

Juliet

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

You might check with Ambry about financial help for the genetic testing. I too had 'normal' sweat tests but was DXd after genetic testing. In the early 1980s my sweat test was a 54 and about 2 years ago I tested 40 and 47. I have insurance though, so it's not quite the same situation. The Fecal elastase test will show if he's pancreatic insufficient or not. In my case it turns out I'm PS but had the test after my CF DX. ~Juliet
 
J

Juliet

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

You might check with Ambry about financial help for the genetic testing. I too had 'normal' sweat tests but was DXd after genetic testing. In the early 1980s my sweat test was a 54 and about 2 years ago I tested 40 and 47. I have insurance though, so it's not quite the same situation. The Fecal elastase test will show if he's pancreatic insufficient or not. In my case it turns out I'm PS but had the test after my CF DX. ~Juliet
 
M

MicheleGazelle

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

All of the sweat test results for my oldest son and I have been at 41. I was deathly ill at the time we were diagnosed and that may be part of why doctors didn't question my diagnosis so much. In contrast, my son had not been on antibiotics in over 3 years. The pediatric clinic he went to kept wanting to order more genetic tests. I don't believe they ever found a gene for either of us. (My insurance denied the final request for a comprehensive, more expensive test at Stanford, so I may never know if I have a known but uncommon gene or if the genes causing my condition have yet to be catalogued.)

Doctor's generally describe our condition as "atypical" or "variant" CF. I have called it "mild" CF in the past but found that was a good way to get in trouble on some CF lists. So I generally say "atypical" these days. (In these forums, "mild CF" seems to be a more acceptable phrase than in some places I post.)

Good luck.
 
M

MicheleGazelle

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

All of the sweat test results for my oldest son and I have been at 41. I was deathly ill at the time we were diagnosed and that may be part of why doctors didn't question my diagnosis so much. In contrast, my son had not been on antibiotics in over 3 years. The pediatric clinic he went to kept wanting to order more genetic tests. I don't believe they ever found a gene for either of us. (My insurance denied the final request for a comprehensive, more expensive test at Stanford, so I may never know if I have a known but uncommon gene or if the genes causing my condition have yet to be catalogued.)

Doctor's generally describe our condition as "atypical" or "variant" CF. I have called it "mild" CF in the past but found that was a good way to get in trouble on some CF lists. So I generally say "atypical" these days. (In these forums, "mild CF" seems to be a more acceptable phrase than in some places I post.)

Good luck.
 
M

MicheleGazelle

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

All of the sweat test results for my oldest son and I have been at 41. I was deathly ill at the time we were diagnosed and that may be part of why doctors didn't question my diagnosis so much. In contrast, my son had not been on antibiotics in over 3 years. The pediatric clinic he went to kept wanting to order more genetic tests. I don't believe they ever found a gene for either of us. (My insurance denied the final request for a comprehensive, more expensive test at Stanford, so I may never know if I have a known but uncommon gene or if the genes causing my condition have yet to be catalogued.)

Doctor's generally describe our condition as "atypical" or "variant" CF. I have called it "mild" CF in the past but found that was a good way to get in trouble on some CF lists. So I generally say "atypical" these days. (In these forums, "mild CF" seems to be a more acceptable phrase than in some places I post.)

Good luck.
 
M

MicheleGazelle

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

All of the sweat test results for my oldest son and I have been at 41. I was deathly ill at the time we were diagnosed and that may be part of why doctors didn't question my diagnosis so much. In contrast, my son had not been on antibiotics in over 3 years. The pediatric clinic he went to kept wanting to order more genetic tests. I don't believe they ever found a gene for either of us. (My insurance denied the final request for a comprehensive, more expensive test at Stanford, so I may never know if I have a known but uncommon gene or if the genes causing my condition have yet to be catalogued.)

Doctor's generally describe our condition as "atypical" or "variant" CF. I have called it "mild" CF in the past but found that was a good way to get in trouble on some CF lists. So I generally say "atypical" these days. (In these forums, "mild CF" seems to be a more acceptable phrase than in some places I post.)

Good luck.
 
M

MicheleGazelle

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

All of the sweat test results for my oldest son and I have been at 41. I was deathly ill at the time we were diagnosed and that may be part of why doctors didn't question my diagnosis so much. In contrast, my son had not been on antibiotics in over 3 years. The pediatric clinic he went to kept wanting to order more genetic tests. I don't believe they ever found a gene for either of us. (My insurance denied the final request for a comprehensive, more expensive test at Stanford, so I may never know if I have a known but uncommon gene or if the genes causing my condition have yet to be catalogued.)
<br />
<br />Doctor's generally describe our condition as "atypical" or "variant" CF. I have called it "mild" CF in the past but found that was a good way to get in trouble on some CF lists. So I generally say "atypical" these days. (In these forums, "mild CF" seems to be a more acceptable phrase than in some places I post.)
<br />
<br />Good luck.
 
C

Chilemom

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

when my daughter was dx the doctor told me that the mutation wasn´t important. But i needed to know so i wrote almost every where around the world, and a lab from U.K. answer me and did the test for free, if not i woudn´t be able to pay for it. I send her DNA and they last like two month.
so, write everywhere, to every university , every lab, hospital and tell them your story, i am sure someone will help you.
 
C

Chilemom

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

when my daughter was dx the doctor told me that the mutation wasn´t important. But i needed to know so i wrote almost every where around the world, and a lab from U.K. answer me and did the test for free, if not i woudn´t be able to pay for it. I send her DNA and they last like two month.
so, write everywhere, to every university , every lab, hospital and tell them your story, i am sure someone will help you.
 
C

Chilemom

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

when my daughter was dx the doctor told me that the mutation wasn´t important. But i needed to know so i wrote almost every where around the world, and a lab from U.K. answer me and did the test for free, if not i woudn´t be able to pay for it. I send her DNA and they last like two month.
so, write everywhere, to every university , every lab, hospital and tell them your story, i am sure someone will help you.
 
C

Chilemom

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

when my daughter was dx the doctor told me that the mutation wasn´t important. But i needed to know so i wrote almost every where around the world, and a lab from U.K. answer me and did the test for free, if not i woudn´t be able to pay for it. I send her DNA and they last like two month.
so, write everywhere, to every university , every lab, hospital and tell them your story, i am sure someone will help you.
 
C

Chilemom

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

when my daughter was dx the doctor told me that the mutation wasn´t important. But i needed to know so i wrote almost every where around the world, and a lab from U.K. answer me and did the test for free, if not i woudn´t be able to pay for it. I send her DNA and they last like two month.
<br />so, write everywhere, to every university , every lab, hospital and tell them your story, i am sure someone will help you.
 
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