Sweat Test

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summer0611

New member
My daughter, 4, was sent to have a sweat test done at our local hospital..not an accredited testing center. Upon completion of the test, I was told that her results were borderline and that they were going to do genetic testing. After they had done that we left the hospital and when I got home, I called the Dr. that sent her to be tested to see what her chloride number was..they said that 0-60 was normal and hers was 67. Well of course I get to looking on all the sites of information and I find that over 60 means positive. I don't understand why I was told wrong. It will take about a week to get the genetic testing done, I was told, and I'm not sure how many mutations they are testing for.What should I do now?
 
S

summer0611

New member
My daughter, 4, was sent to have a sweat test done at our local hospital..not an accredited testing center. Upon completion of the test, I was told that her results were borderline and that they were going to do genetic testing. After they had done that we left the hospital and when I got home, I called the Dr. that sent her to be tested to see what her chloride number was..they said that 0-60 was normal and hers was 67. Well of course I get to looking on all the sites of information and I find that over 60 means positive. I don't understand why I was told wrong. It will take about a week to get the genetic testing done, I was told, and I'm not sure how many mutations they are testing for.What should I do now?
 
S

summer0611

New member
My daughter, 4, was sent to have a sweat test done at our local hospital..not an accredited testing center. Upon completion of the test, I was told that her results were borderline and that they were going to do genetic testing. After they had done that we left the hospital and when I got home, I called the Dr. that sent her to be tested to see what her chloride number was..they said that 0-60 was normal and hers was 67. Well of course I get to looking on all the sites of information and I find that over 60 means positive. I don't understand why I was told wrong. It will take about a week to get the genetic testing done, I was told, and I'm not sure how many mutations they are testing for.What should I do now?
 
S

summer0611

New member
My daughter, 4, was sent to have a sweat test done at our local hospital..not an accredited testing center. Upon completion of the test, I was told that her results were borderline and that they were going to do genetic testing. After they had done that we left the hospital and when I got home, I called the Dr. that sent her to be tested to see what her chloride number was..they said that 0-60 was normal and hers was 67. Well of course I get to looking on all the sites of information and I find that over 60 means positive. I don't understand why I was told wrong. It will take about a week to get the genetic testing done, I was told, and I'm not sure how many mutations they are testing for.What should I do now?
 
S

summer0611

New member
My daughter, 4, was sent to have a sweat test done at our local hospital..not an accredited testing center. Upon completion of the test, I was told that her results were borderline and that they were going to do genetic testing. After they had done that we left the hospital and when I got home, I called the Dr. that sent her to be tested to see what her chloride number was..they said that 0-60 was normal and hers was 67. Well of course I get to looking on all the sites of information and I find that over 60 means positive. I don't understand why I was told wrong. It will take about a week to get the genetic testing done, I was told, and I'm not sure how many mutations they are testing for.What should I do now?
 
K

kaylasdad

New member
Hi and welcome to the site. Chloride numbers below 40 means neg, 40 to 60 are boderline,and above 60 is positive.
Thats what they told us when we had are Daughters done.
If it where me I would find an accredited cf clinic and tell them her Chloride number and they will tell you what to do.The best site to learn from is cff.org. It has all the up to date info. You found a great site here there are a lot of good people here that will help with any questions you might have. And remember there are no dumb questions so ask anything you wish,someone here will have the answer.
 
K

kaylasdad

New member
Hi and welcome to the site. Chloride numbers below 40 means neg, 40 to 60 are boderline,and above 60 is positive.
Thats what they told us when we had are Daughters done.
If it where me I would find an accredited cf clinic and tell them her Chloride number and they will tell you what to do.The best site to learn from is cff.org. It has all the up to date info. You found a great site here there are a lot of good people here that will help with any questions you might have. And remember there are no dumb questions so ask anything you wish,someone here will have the answer.
 
K

kaylasdad

New member
Hi and welcome to the site. Chloride numbers below 40 means neg, 40 to 60 are boderline,and above 60 is positive.
Thats what they told us when we had are Daughters done.
If it where me I would find an accredited cf clinic and tell them her Chloride number and they will tell you what to do.The best site to learn from is cff.org. It has all the up to date info. You found a great site here there are a lot of good people here that will help with any questions you might have. And remember there are no dumb questions so ask anything you wish,someone here will have the answer.
 
K

kaylasdad

New member
Hi and welcome to the site. Chloride numbers below 40 means neg, 40 to 60 are boderline,and above 60 is positive.
Thats what they told us when we had are Daughters done.
If it where me I would find an accredited cf clinic and tell them her Chloride number and they will tell you what to do.The best site to learn from is cff.org. It has all the up to date info. You found a great site here there are a lot of good people here that will help with any questions you might have. And remember there are no dumb questions so ask anything you wish,someone here will have the answer.
 
K

kaylasdad

New member
Hi and welcome to the site. Chloride numbers below 40 means neg, 40 to 60 are boderline,and above 60 is positive.
<br />Thats what they told us when we had are Daughters done.
<br />If it where me I would find an accredited cf clinic and tell them her Chloride number and they will tell you what to do.The best site to learn from is cff.org. It has all the up to date info. You found a great site here there are a lot of good people here that will help with any questions you might have. And remember there are no dumb questions so ask anything you wish,someone here will have the answer.
 
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Cherylwithone

Guest
First, Welcome to this great site<img src="i/expressions/face-icon-small-smile.gif" border="0"> Kaylasdad is correct, find a accredited cf clinic. 60+ is positive. Also, since they are not accredited you really don't know if they did the sweat test right. It's great to have the genetic testing done but if they are only testing for the most common and your daughter happens to have the not commons ones. They can come back and say "Good news, your daughter does't have cf" when the she really may have it. I do not wish for your daughter to have this but if she does and your told she does'nt then you miss out on being proactive with this disease. Prevention is everything. The sooner you start the better.

I wish you and yours the best.

Cheryl mom to Malora 15 w/cf
 
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Cherylwithone

Guest
First, Welcome to this great site<img src="i/expressions/face-icon-small-smile.gif" border="0"> Kaylasdad is correct, find a accredited cf clinic. 60+ is positive. Also, since they are not accredited you really don't know if they did the sweat test right. It's great to have the genetic testing done but if they are only testing for the most common and your daughter happens to have the not commons ones. They can come back and say "Good news, your daughter does't have cf" when the she really may have it. I do not wish for your daughter to have this but if she does and your told she does'nt then you miss out on being proactive with this disease. Prevention is everything. The sooner you start the better.

I wish you and yours the best.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
First, Welcome to this great site<img src="i/expressions/face-icon-small-smile.gif" border="0"> Kaylasdad is correct, find a accredited cf clinic. 60+ is positive. Also, since they are not accredited you really don't know if they did the sweat test right. It's great to have the genetic testing done but if they are only testing for the most common and your daughter happens to have the not commons ones. They can come back and say "Good news, your daughter does't have cf" when the she really may have it. I do not wish for your daughter to have this but if she does and your told she does'nt then you miss out on being proactive with this disease. Prevention is everything. The sooner you start the better.

I wish you and yours the best.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
First, Welcome to this great site<img src="i/expressions/face-icon-small-smile.gif" border="0"> Kaylasdad is correct, find a accredited cf clinic. 60+ is positive. Also, since they are not accredited you really don't know if they did the sweat test right. It's great to have the genetic testing done but if they are only testing for the most common and your daughter happens to have the not commons ones. They can come back and say "Good news, your daughter does't have cf" when the she really may have it. I do not wish for your daughter to have this but if she does and your told she does'nt then you miss out on being proactive with this disease. Prevention is everything. The sooner you start the better.

I wish you and yours the best.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
First, Welcome to this great site<img src="i/expressions/face-icon-small-smile.gif" border="0"> Kaylasdad is correct, find a accredited cf clinic. 60+ is positive. Also, since they are not accredited you really don't know if they did the sweat test right. It's great to have the genetic testing done but if they are only testing for the most common and your daughter happens to have the not commons ones. They can come back and say "Good news, your daughter does't have cf" when the she really may have it. I do not wish for your daughter to have this but if she does and your told she does'nt then you miss out on being proactive with this disease. Prevention is everything. The sooner you start the better.
<br />
<br />I wish you and yours the best.
<br />
<br />Cheryl mom to Malora 15 w/cf
 
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NoExcuses

New member
Just to clarify - sweat testing is almost always (or should be) coupled with genetic testing because results are often so inaccurate with sweat testing. we have several CFers on this site with low sweat chloride #s but genetic tests reveal CF.

so definitely push for the genetic test that tests for ALL known CF mutations (called the Ambry Amplified). some tests only test for the top 30 genes which is pretty ridiculous in my mind.

best of luck.
 
N

NoExcuses

New member
Just to clarify - sweat testing is almost always (or should be) coupled with genetic testing because results are often so inaccurate with sweat testing. we have several CFers on this site with low sweat chloride #s but genetic tests reveal CF.

so definitely push for the genetic test that tests for ALL known CF mutations (called the Ambry Amplified). some tests only test for the top 30 genes which is pretty ridiculous in my mind.

best of luck.
 
N

NoExcuses

New member
Just to clarify - sweat testing is almost always (or should be) coupled with genetic testing because results are often so inaccurate with sweat testing. we have several CFers on this site with low sweat chloride #s but genetic tests reveal CF.

so definitely push for the genetic test that tests for ALL known CF mutations (called the Ambry Amplified). some tests only test for the top 30 genes which is pretty ridiculous in my mind.

best of luck.
 
N

NoExcuses

New member
Just to clarify - sweat testing is almost always (or should be) coupled with genetic testing because results are often so inaccurate with sweat testing. we have several CFers on this site with low sweat chloride #s but genetic tests reveal CF.

so definitely push for the genetic test that tests for ALL known CF mutations (called the Ambry Amplified). some tests only test for the top 30 genes which is pretty ridiculous in my mind.

best of luck.
 
N

NoExcuses

New member
Just to clarify - sweat testing is almost always (or should be) coupled with genetic testing because results are often so inaccurate with sweat testing. we have several CFers on this site with low sweat chloride #s but genetic tests reveal CF.
<br />
<br />so definitely push for the genetic test that tests for ALL known CF mutations (called the Ambry Amplified). some tests only test for the top 30 genes which is pretty ridiculous in my mind.
<br />
<br />best of luck.
 
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