JUST REFERRED

[MomMomx2]

My grandson was just referred to the Children's Neumors Clinic in Orlando. His sweat test, done at a different hospital, came out to 125 . His pediatrician has been very helpful. She changed his formula and has put us in contact with the specialist there at Neumors. They are going to do another sweat test, can those be wrong???

My granddaughter had a sweat test done and hers was 25, which I guess is normal? Do I ask to have her sweat test done again, just to be safe???

Any feedback would be appreciated.

 

[MomMomx2]

My grandson was just referred to the Children's Neumors Clinic in Orlando. His sweat test, done at a different hospital, came out to 125 . His pediatrician has been very helpful. She changed his formula and has put us in contact with the specialist there at Neumors. They are going to do another sweat test, can those be wrong???

My granddaughter had a sweat test done and hers was 25, which I guess is normal? Do I ask to have her sweat test done again, just to be safe???

Any feedback would be appreciated.

 

[MomMomx2]

My grandson was just referred to the Children's Neumors Clinic in Orlando. His sweat test, done at a different hospital, came out to 125 . His pediatrician has been very helpful. She changed his formula and has put us in contact with the specialist there at Neumors. They are going to do another sweat test, can those be wrong???

My granddaughter had a sweat test done and hers was 25, which I guess is normal? Do I ask to have her sweat test done again, just to be safe???

Any feedback would be appreciated.

 

[MomMomx2]

My grandson was just referred to the Children's Neumors Clinic in Orlando. His sweat test, done at a different hospital, came out to 125 . His pediatrician has been very helpful. She changed his formula and has put us in contact with the specialist there at Neumors. They are going to do another sweat test, can those be wrong???

My granddaughter had a sweat test done and hers was 25, which I guess is normal? Do I ask to have her sweat test done again, just to be safe???

Any feedback would be appreciated.

 

[MomMomx2]

My grandson was just referred to the Children's Neumors Clinic in Orlando. His sweat test, done at a different hospital, came out to 125 . His pediatrician has been very helpful. She changed his formula and has put us in contact with the specialist there at Neumors. They are going to do another sweat test, can those be wrong???

My granddaughter had a sweat test done and hers was 25, which I guess is normal? Do I ask to have her sweat test done again, just to be safe???

Any feedback would be appreciated.

 

[purplemartin]

Welcome! Yes, the sweat test can be negative! The only true and accurate way to determine CF is to have genetic testing, the full Ambry test. As for your grandaughter, if your grandson's genetic test comes back positive, you may inquire about having her genetically tested as well.

We only had a sweat test done on our daughter, but her results came back a 6 and she shows absolutely NO signs of CF.......not even salty!

Good luck and I sincerely wish your family the best! Nonetheless, if your grandson is positive for CF, you will have a great "extended" CF family here to support you!

 

[purplemartin]

Welcome! Yes, the sweat test can be negative! The only true and accurate way to determine CF is to have genetic testing, the full Ambry test. As for your grandaughter, if your grandson's genetic test comes back positive, you may inquire about having her genetically tested as well.

We only had a sweat test done on our daughter, but her results came back a 6 and she shows absolutely NO signs of CF.......not even salty!

Good luck and I sincerely wish your family the best! Nonetheless, if your grandson is positive for CF, you will have a great "extended" CF family here to support you!

 

[purplemartin]

Welcome! Yes, the sweat test can be negative! The only true and accurate way to determine CF is to have genetic testing, the full Ambry test. As for your grandaughter, if your grandson's genetic test comes back positive, you may inquire about having her genetically tested as well.

We only had a sweat test done on our daughter, but her results came back a 6 and she shows absolutely NO signs of CF.......not even salty!

Good luck and I sincerely wish your family the best! Nonetheless, if your grandson is positive for CF, you will have a great "extended" CF family here to support you!

 

[purplemartin]

Welcome! Yes, the sweat test can be negative! The only true and accurate way to determine CF is to have genetic testing, the full Ambry test. As for your grandaughter, if your grandson's genetic test comes back positive, you may inquire about having her genetically tested as well.

We only had a sweat test done on our daughter, but her results came back a 6 and she shows absolutely NO signs of CF.......not even salty!

Good luck and I sincerely wish your family the best! Nonetheless, if your grandson is positive for CF, you will have a great "extended" CF family here to support you!

 

[purplemartin]

Welcome! Yes, the sweat test can be negative! The only true and accurate way to determine CF is to have genetic testing, the full Ambry test. As for your grandaughter, if your grandson's genetic test comes back positive, you may inquire about having her genetically tested as well.

We only had a sweat test done on our daughter, but her results came back a 6 and she shows absolutely NO signs of CF.......not even salty!

Good luck and I sincerely wish your family the best! Nonetheless, if your grandson is positive for CF, you will have a great "extended" CF family here to support you!

 

[Alyssa]

Generally speaking there are a lot of problems with accurate sweat test numbers -- yes it is possible that both your grand children's numbers are not accurately reflecting a true diagnosis of CF or a lack of CF.

Here's more details:
Again generally speaking.... there is far more concern over false negatives... the grand daughter at 25 is at more of a risk of being told she does not have CF when in fact she might have it. Very rarely does someone have a positive number (especially as high as 125) and find out they do not have CF. It is likely they have correctly diagnosed him with only the sweat test for now.... both children should get follow up genetic testing, which I'm sure will follow after the grandson gets to Children's in Orlando -- I'm assuming they are a certified CF center.

By the way do either of these children show any symptoms of CF? I'm assuming the grandson does for sure huh?

 

[Alyssa]

Generally speaking there are a lot of problems with accurate sweat test numbers -- yes it is possible that both your grand children's numbers are not accurately reflecting a true diagnosis of CF or a lack of CF.

Here's more details:
Again generally speaking.... there is far more concern over false negatives... the grand daughter at 25 is at more of a risk of being told she does not have CF when in fact she might have it. Very rarely does someone have a positive number (especially as high as 125) and find out they do not have CF. It is likely they have correctly diagnosed him with only the sweat test for now.... both children should get follow up genetic testing, which I'm sure will follow after the grandson gets to Children's in Orlando -- I'm assuming they are a certified CF center.

By the way do either of these children show any symptoms of CF? I'm assuming the grandson does for sure huh?

 

[Alyssa]

Generally speaking there are a lot of problems with accurate sweat test numbers -- yes it is possible that both your grand children's numbers are not accurately reflecting a true diagnosis of CF or a lack of CF.

Here's more details:
Again generally speaking.... there is far more concern over false negatives... the grand daughter at 25 is at more of a risk of being told she does not have CF when in fact she might have it. Very rarely does someone have a positive number (especially as high as 125) and find out they do not have CF. It is likely they have correctly diagnosed him with only the sweat test for now.... both children should get follow up genetic testing, which I'm sure will follow after the grandson gets to Children's in Orlando -- I'm assuming they are a certified CF center.

By the way do either of these children show any symptoms of CF? I'm assuming the grandson does for sure huh?

 

[Alyssa]

Generally speaking there are a lot of problems with accurate sweat test numbers -- yes it is possible that both your grand children's numbers are not accurately reflecting a true diagnosis of CF or a lack of CF.

Here's more details:
Again generally speaking.... there is far more concern over false negatives... the grand daughter at 25 is at more of a risk of being told she does not have CF when in fact she might have it. Very rarely does someone have a positive number (especially as high as 125) and find out they do not have CF. It is likely they have correctly diagnosed him with only the sweat test for now.... both children should get follow up genetic testing, which I'm sure will follow after the grandson gets to Children's in Orlando -- I'm assuming they are a certified CF center.

By the way do either of these children show any symptoms of CF? I'm assuming the grandson does for sure huh?

 

[Alyssa]

Generally speaking there are a lot of problems with accurate sweat test numbers -- yes it is possible that both your grand children's numbers are not accurately reflecting a true diagnosis of CF or a lack of CF.

Here's more details:
Again generally speaking.... there is far more concern over false negatives... the grand daughter at 25 is at more of a risk of being told she does not have CF when in fact she might have it. Very rarely does someone have a positive number (especially as high as 125) and find out they do not have CF. It is likely they have correctly diagnosed him with only the sweat test for now.... both children should get follow up genetic testing, which I'm sure will follow after the grandson gets to Children's in Orlando -- I'm assuming they are a certified CF center.

By the way do either of these children show any symptoms of CF? I'm assuming the grandson does for sure huh?

 

[MomMomx2]

Thank you for your feedback.

I fully intend to have both Children do the full genetic testing, just to be on the safe side, especially with my granddaughter. With my grandson, test high, I'm sure that won't change by much, however, with my granddaughter being 25, it could be misdiagnosed.

I'm trying to stay positive and have recently found a church to attend, plus this forum. I'm truly glad I went searching for information and found this site. I've had some great insight to CF and will continue with it.

Thank you again!

Michelle

Proud MomMom to CiCi & Seth

 

[MomMomx2]

Thank you for your feedback.

I fully intend to have both Children do the full genetic testing, just to be on the safe side, especially with my granddaughter. With my grandson, test high, I'm sure that won't change by much, however, with my granddaughter being 25, it could be misdiagnosed.

I'm trying to stay positive and have recently found a church to attend, plus this forum. I'm truly glad I went searching for information and found this site. I've had some great insight to CF and will continue with it.

Thank you again!

Michelle

Proud MomMom to CiCi & Seth

 

[MomMomx2]

Thank you for your feedback.

I fully intend to have both Children do the full genetic testing, just to be on the safe side, especially with my granddaughter. With my grandson, test high, I'm sure that won't change by much, however, with my granddaughter being 25, it could be misdiagnosed.

I'm trying to stay positive and have recently found a church to attend, plus this forum. I'm truly glad I went searching for information and found this site. I've had some great insight to CF and will continue with it.

Thank you again!

Michelle

Proud MomMom to CiCi & Seth

 

[MomMomx2]

Thank you for your feedback.

I fully intend to have both Children do the full genetic testing, just to be on the safe side, especially with my granddaughter. With my grandson, test high, I'm sure that won't change by much, however, with my granddaughter being 25, it could be misdiagnosed.

I'm trying to stay positive and have recently found a church to attend, plus this forum. I'm truly glad I went searching for information and found this site. I've had some great insight to CF and will continue with it.

Thank you again!

Michelle

Proud MomMom to CiCi & Seth

 

[MomMomx2]

Thank you for your feedback.

I fully intend to have both Children do the full genetic testing, just to be on the safe side, especially with my granddaughter. With my grandson, test high, I'm sure that won't change by much, however, with my granddaughter being 25, it could be misdiagnosed.

I'm trying to stay positive and have recently found a church to attend, plus this forum. I'm truly glad I went searching for information and found this site. I've had some great insight to CF and will continue with it.

Thank you again!

Michelle

Proud MomMom to CiCi & Seth