New to this Update

[JandJ1224]

**Update- A second sweat test was done at a different location- done differently- were told no going outside, only 30 min- this test came back negative with a 10. We are still following up with genetic testing just to be sure

When I was pregnant I tested positive as a carrier for CF. My husband tested negative. My daughter tested positive as a carrier in her newborn screening. At almost 11 months old we went for the sweat test and the result came back borderline. My daughter presents as being healthy no known family history of CF. They are repeating the sweat test and we are meeting with a genetic counsler next week. If anyone has any guidance or can share their story I would really appreciate it. Thanks

 

[JandJ1224]

**Update- A second sweat test was done at a different location- done differently- were told no going outside, only 30 min- this test came back negative with a 10. We are still following up with genetic testing just to be sure

When I was pregnant I tested positive as a carrier for CF. My husband tested negative. My daughter tested positive as a carrier in her newborn screening. At almost 11 months old we went for the sweat test and the result came back borderline. My daughter presents as being healthy no known family history of CF. They are repeating the sweat test and we are meeting with a genetic counsler next week. If anyone has any guidance or can share their story I would really appreciate it. Thanks

 

[JandJ1224]

**Update- A second sweat test was done at a different location- done differently- were told no going outside, only 30 min- this test came back negative with a 10. We are still following up with genetic testing just to be sure

When I was pregnant I tested positive as a carrier for CF. My husband tested negative. My daughter tested positive as a carrier in her newborn screening. At almost 11 months old we went for the sweat test and the result came back borderline. My daughter presents as being healthy no known family history of CF. They are repeating the sweat test and we are meeting with a genetic counsler next week. If anyone has any guidance or can share their story I would really appreciate it. Thanks

 

[JandJ1224]

**Update- A second sweat test was done at a different location- done differently- were told no going outside, only 30 min- this test came back negative with a 10. We are still following up with genetic testing just to be sure

When I was pregnant I tested positive as a carrier for CF. My husband tested negative. My daughter tested positive as a carrier in her newborn screening. At almost 11 months old we went for the sweat test and the result came back borderline. My daughter presents as being healthy no known family history of CF. They are repeating the sweat test and we are meeting with a genetic counsler next week. If anyone has any guidance or can share their story I would really appreciate it. Thanks

 

[JandJ1224]

**Update- A second sweat test was done at a different location- done differently- were told no going outside, only 30 min- this test came back negative with a 10. We are still following up with genetic testing just to be sure
<br />
<br />When I was pregnant I tested positive as a carrier for CF. My husband tested negative. My daughter tested positive as a carrier in her newborn screening. At almost 11 months old we went for the sweat test and the result came back borderline. My daughter presents as being healthy no known family history of CF. They are repeating the sweat test and we are meeting with a genetic counsler next week. If anyone has any guidance or can share their story I would really appreciate it. Thanks

 

[Mommafirst]

New to this

I'm so sorry that you are hear and worrying that your daughter might have CF.

My daughter was born with a bowel obstruction and we were told that we should probably sweat test her for CF. When we did she got a borderline result twice and then they ran genetic blood work before we confirmed a CF diagnosis.

My daughter was a very typical normal infant. She is pancreatic sufficient, so she didn't need enzymes as an infant and had no lung issues or any other CF symptoms. Things are changing now, but I think it isn't unheard of for a CF kid to present totally normally for the first few years.

On the other hand, MOST CF kids are pancreatic insufficient and have loose, bulky, greasy stools and a lot of issues gaining weight before they are placed on enzyme therapy. So if your daughter is growing well and has no other symptoms at all, chances are good that she's just tripped all the tests because of her carrier status. I certainly hope that is the case -- but don't settle until you can know for sure and the only way to do that is to have a complete (1500+ mutations) genetic test.

 

[Mommafirst]

New to this

I'm so sorry that you are hear and worrying that your daughter might have CF.

My daughter was born with a bowel obstruction and we were told that we should probably sweat test her for CF. When we did she got a borderline result twice and then they ran genetic blood work before we confirmed a CF diagnosis.

My daughter was a very typical normal infant. She is pancreatic sufficient, so she didn't need enzymes as an infant and had no lung issues or any other CF symptoms. Things are changing now, but I think it isn't unheard of for a CF kid to present totally normally for the first few years.

On the other hand, MOST CF kids are pancreatic insufficient and have loose, bulky, greasy stools and a lot of issues gaining weight before they are placed on enzyme therapy. So if your daughter is growing well and has no other symptoms at all, chances are good that she's just tripped all the tests because of her carrier status. I certainly hope that is the case -- but don't settle until you can know for sure and the only way to do that is to have a complete (1500+ mutations) genetic test.

 

[Mommafirst]

New to this

I'm so sorry that you are hear and worrying that your daughter might have CF.

My daughter was born with a bowel obstruction and we were told that we should probably sweat test her for CF. When we did she got a borderline result twice and then they ran genetic blood work before we confirmed a CF diagnosis.

My daughter was a very typical normal infant. She is pancreatic sufficient, so she didn't need enzymes as an infant and had no lung issues or any other CF symptoms. Things are changing now, but I think it isn't unheard of for a CF kid to present totally normally for the first few years.

On the other hand, MOST CF kids are pancreatic insufficient and have loose, bulky, greasy stools and a lot of issues gaining weight before they are placed on enzyme therapy. So if your daughter is growing well and has no other symptoms at all, chances are good that she's just tripped all the tests because of her carrier status. I certainly hope that is the case -- but don't settle until you can know for sure and the only way to do that is to have a complete (1500+ mutations) genetic test.

 

[Mommafirst]

New to this

I'm so sorry that you are hear and worrying that your daughter might have CF.

My daughter was born with a bowel obstruction and we were told that we should probably sweat test her for CF. When we did she got a borderline result twice and then they ran genetic blood work before we confirmed a CF diagnosis.

My daughter was a very typical normal infant. She is pancreatic sufficient, so she didn't need enzymes as an infant and had no lung issues or any other CF symptoms. Things are changing now, but I think it isn't unheard of for a CF kid to present totally normally for the first few years.

On the other hand, MOST CF kids are pancreatic insufficient and have loose, bulky, greasy stools and a lot of issues gaining weight before they are placed on enzyme therapy. So if your daughter is growing well and has no other symptoms at all, chances are good that she's just tripped all the tests because of her carrier status. I certainly hope that is the case -- but don't settle until you can know for sure and the only way to do that is to have a complete (1500+ mutations) genetic test.

 

[Mommafirst]

New to this

I'm so sorry that you are hear and worrying that your daughter might have CF.
<br />
<br />My daughter was born with a bowel obstruction and we were told that we should probably sweat test her for CF. When we did she got a borderline result twice and then they ran genetic blood work before we confirmed a CF diagnosis.
<br />
<br />My daughter was a very typical normal infant. She is pancreatic sufficient, so she didn't need enzymes as an infant and had no lung issues or any other CF symptoms. Things are changing now, but I think it isn't unheard of for a CF kid to present totally normally for the first few years.
<br />
<br />On the other hand, MOST CF kids are pancreatic insufficient and have loose, bulky, greasy stools and a lot of issues gaining weight before they are placed on enzyme therapy. So if your daughter is growing well and has no other symptoms at all, chances are good that she's just tripped all the tests because of her carrier status. I certainly hope that is the case -- but don't settle until you can know for sure and the only way to do that is to have a complete (1500+ mutations) genetic test.

 

[babyluke]

New to this

Our son has more "classic" CF symptoms--very small at birth and could not put on weight. He began to have respiratory infections by the time he was 6-8 weeks old and was finally diagnosed by a positive sweat test at 3 months. We then had the follow up genetic testing. I have read many posts by others on this site about borderline sweat test results and it is usually the general consensus to pursue the genetic testing. With your husband's results coming back negative, she should not have CF as it does take two carriers for the the child to have CF. However, I have also read many times on this site that some screenings/testings do not look for the more rare mutations. So as Heather said, I would just make sure they are doing the full panel on your daughter.
Angela, mom to 7 terrific kids, including Luke, 2 years old w/cf

 

[babyluke]

New to this

Our son has more "classic" CF symptoms--very small at birth and could not put on weight. He began to have respiratory infections by the time he was 6-8 weeks old and was finally diagnosed by a positive sweat test at 3 months. We then had the follow up genetic testing. I have read many posts by others on this site about borderline sweat test results and it is usually the general consensus to pursue the genetic testing. With your husband's results coming back negative, she should not have CF as it does take two carriers for the the child to have CF. However, I have also read many times on this site that some screenings/testings do not look for the more rare mutations. So as Heather said, I would just make sure they are doing the full panel on your daughter.
Angela, mom to 7 terrific kids, including Luke, 2 years old w/cf

 

[babyluke]

New to this

Our son has more "classic" CF symptoms--very small at birth and could not put on weight. He began to have respiratory infections by the time he was 6-8 weeks old and was finally diagnosed by a positive sweat test at 3 months. We then had the follow up genetic testing. I have read many posts by others on this site about borderline sweat test results and it is usually the general consensus to pursue the genetic testing. With your husband's results coming back negative, she should not have CF as it does take two carriers for the the child to have CF. However, I have also read many times on this site that some screenings/testings do not look for the more rare mutations. So as Heather said, I would just make sure they are doing the full panel on your daughter.
Angela, mom to 7 terrific kids, including Luke, 2 years old w/cf

 

[babyluke]

New to this

Our son has more "classic" CF symptoms--very small at birth and could not put on weight. He began to have respiratory infections by the time he was 6-8 weeks old and was finally diagnosed by a positive sweat test at 3 months. We then had the follow up genetic testing. I have read many posts by others on this site about borderline sweat test results and it is usually the general consensus to pursue the genetic testing. With your husband's results coming back negative, she should not have CF as it does take two carriers for the the child to have CF. However, I have also read many times on this site that some screenings/testings do not look for the more rare mutations. So as Heather said, I would just make sure they are doing the full panel on your daughter.
Angela, mom to 7 terrific kids, including Luke, 2 years old w/cf

 

[babyluke]

New to this

Our son has more "classic" CF symptoms--very small at birth and could not put on weight. He began to have respiratory infections by the time he was 6-8 weeks old and was finally diagnosed by a positive sweat test at 3 months. We then had the follow up genetic testing. I have read many posts by others on this site about borderline sweat test results and it is usually the general consensus to pursue the genetic testing. With your husband's results coming back negative, she should not have CF as it does take two carriers for the the child to have CF. However, I have also read many times on this site that some screenings/testings do not look for the more rare mutations. So as Heather said, I would just make sure they are doing the full panel on your daughter.
<br />Angela, mom to 7 terrific kids, including Luke, 2 years old w/cf