Negative sweat test but still FTT

[Karry]

My 5 yo has been FTT since he turned 9 months old. He has also had bouts of constipation starting around 5 months of age. We finally started seeing a GI when he was 3 and only weighed 24 lbs. He had a sweat test done at that age and I was told it was negative, but I don't know his actual number. He's had numerous other testing done that has also all come back negative.

I have another son, he's 3, who also started having trouble gaining weight around the same time (9 mo). We tried to get three sweat tests on him, but he never sweat enough, he had the genetic test done (not sure which) and was negative. He has been sick more (ear infections, sinus infections, RSV), but is now no longer FTT.

I'm just wondering if it would be worth it to have my older son tested with the genetic test or if I should just assume that he doesn't have CF because of his negative sweat test.

 

[Karry]

My 5 yo has been FTT since he turned 9 months old. He has also had bouts of constipation starting around 5 months of age. We finally started seeing a GI when he was 3 and only weighed 24 lbs. He had a sweat test done at that age and I was told it was negative, but I don't know his actual number. He's had numerous other testing done that has also all come back negative.

I have another son, he's 3, who also started having trouble gaining weight around the same time (9 mo). We tried to get three sweat tests on him, but he never sweat enough, he had the genetic test done (not sure which) and was negative. He has been sick more (ear infections, sinus infections, RSV), but is now no longer FTT.

I'm just wondering if it would be worth it to have my older son tested with the genetic test or if I should just assume that he doesn't have CF because of his negative sweat test.

 

[Karry]

My 5 yo has been FTT since he turned 9 months old. He has also had bouts of constipation starting around 5 months of age. We finally started seeing a GI when he was 3 and only weighed 24 lbs. He had a sweat test done at that age and I was told it was negative, but I don't know his actual number. He's had numerous other testing done that has also all come back negative.

I have another son, he's 3, who also started having trouble gaining weight around the same time (9 mo). We tried to get three sweat tests on him, but he never sweat enough, he had the genetic test done (not sure which) and was negative. He has been sick more (ear infections, sinus infections, RSV), but is now no longer FTT.

I'm just wondering if it would be worth it to have my older son tested with the genetic test or if I should just assume that he doesn't have CF because of his negative sweat test.

 

[JazzysMom]

There are loads of stories to back up the fact that you should never ever ASSume a person doesnt have CF solely on the fact of a negative sweat test. If there are symptoms that coincide with CF then YES persue the genetic testing. Its better to be safe then sorry!

 

[JazzysMom]

There are loads of stories to back up the fact that you should never ever ASSume a person doesnt have CF solely on the fact of a negative sweat test. If there are symptoms that coincide with CF then YES persue the genetic testing. Its better to be safe then sorry!

 

[JazzysMom]

There are loads of stories to back up the fact that you should never ever ASSume a person doesnt have CF solely on the fact of a negative sweat test. If there are symptoms that coincide with CF then YES persue the genetic testing. Its better to be safe then sorry!

 

[Alyssa]

Ditto !!! There are loads of people with CF who have negative or borderline sweat tests -- it's a good tool, but not always a clear indicator in the more vague cases.

My vote is to test both of your kids with FULL genetic testing (over 1500 mutations)

 

[Alyssa]

Ditto !!! There are loads of people with CF who have negative or borderline sweat tests -- it's a good tool, but not always a clear indicator in the more vague cases.

My vote is to test both of your kids with FULL genetic testing (over 1500 mutations)

 

[Alyssa]

Ditto !!! There are loads of people with CF who have negative or borderline sweat tests -- it's a good tool, but not always a clear indicator in the more vague cases.

My vote is to test both of your kids with FULL genetic testing (over 1500 mutations)

 

[Karry]

Thanks for your replies. I had no idea that so many people with CF have had negative sweat tests until reading this forum. I will talk to our doctor about genetic testing for my son.

 

[Karry]

Thanks for your replies. I had no idea that so many people with CF have had negative sweat tests until reading this forum. I will talk to our doctor about genetic testing for my son.

 

[Karry]

Thanks for your replies. I had no idea that so many people with CF have had negative sweat tests until reading this forum. I will talk to our doctor about genetic testing for my son.