My daughter's experience is somewhat similar to your son's. She had failure to thrive at 4 months and was exclusively breast fed. She was sent for a sweat test and an upper GI. It was determined that she had reflux and her sweat test was a 34 (not borderline but on the high side for an infant). Fast forward a few months and since I was still concerned about the possibility of CF, despite a normal fecal elastase test and a negative CF genetic screen the doctor ordered the full Ambry genetic test. The results came in 2 days ago that she is negative for mutations but has something called a 5T variant that acts like a mutation. So, in essence she is a carrier and that variant is what causes her sweat test to be on the high side of normal. So, it is quite possible that your son could just be a carrier!
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3 mo. old - Borderline sweat test
- Thread starter MomOfMiles
- Start date
My daughter's experience is somewhat similar to your son's. She had failure to thrive at 4 months and was exclusively breast fed. She was sent for a sweat test and an upper GI. It was determined that she had reflux and her sweat test was a 34 (not borderline but on the high side for an infant). Fast forward a few months and since I was still concerned about the possibility of CF, despite a normal fecal elastase test and a negative CF genetic screen the doctor ordered the full Ambry genetic test. The results came in 2 days ago that she is negative for mutations but has something called a 5T variant that acts like a mutation. So, in essence she is a carrier and that variant is what causes her sweat test to be on the high side of normal. So, it is quite possible that your son could just be a carrier!
My daughter's experience is somewhat similar to your son's. She had failure to thrive at 4 months and was exclusively breast fed. She was sent for a sweat test and an upper GI. It was determined that she had reflux and her sweat test was a 34 (not borderline but on the high side for an infant). Fast forward a few months and since I was still concerned about the possibility of CF, despite a normal fecal elastase test and a negative CF genetic screen the doctor ordered the full Ambry genetic test. The results came in 2 days ago that she is negative for mutations but has something called a 5T variant that acts like a mutation. So, in essence she is a carrier and that variant is what causes her sweat test to be on the high side of normal. So, it is quite possible that your son could just be a carrier!
My daughter's experience is somewhat similar to your son's. She had failure to thrive at 4 months and was exclusively breast fed. She was sent for a sweat test and an upper GI. It was determined that she had reflux and her sweat test was a 34 (not borderline but on the high side for an infant). Fast forward a few months and since I was still concerned about the possibility of CF, despite a normal fecal elastase test and a negative CF genetic screen the doctor ordered the full Ambry genetic test. The results came in 2 days ago that she is negative for mutations but has something called a 5T variant that acts like a mutation. So, in essence she is a carrier and that variant is what causes her sweat test to be on the high side of normal. So, it is quite possible that your son could just be a carrier!
My daughter's experience is somewhat similar to your son's. She had failure to thrive at 4 months and was exclusively breast fed. She was sent for a sweat test and an upper GI. It was determined that she had reflux and her sweat test was a 34 (not borderline but on the high side for an infant). Fast forward a few months and since I was still concerned about the possibility of CF, despite a normal fecal elastase test and a negative CF genetic screen the doctor ordered the full Ambry genetic test. The results came in 2 days ago that she is negative for mutations but has something called a 5T variant that acts like a mutation. So, in essence she is a carrier and that variant is what causes her sweat test to be on the high side of normal. So, it is quite possible that your son could just be a carrier!
MomOfMiles
New member
Does that mean the threshold for normal/borderline/positive is different for infants? I haven't seen that on anything I've read, though I have seen on some places that 30-59 is borderline, where most sites say 40-59 is borderline.
MomOfMiles
New member
Does that mean the threshold for normal/borderline/positive is different for infants? I haven't seen that on anything I've read, though I have seen on some places that 30-59 is borderline, where most sites say 40-59 is borderline.
MomOfMiles
New member
Does that mean the threshold for normal/borderline/positive is different for infants? I haven't seen that on anything I've read, though I have seen on some places that 30-59 is borderline, where most sites say 40-59 is borderline.
MomOfMiles
New member
Does that mean the threshold for normal/borderline/positive is different for infants? I haven't seen that on anything I've read, though I have seen on some places that 30-59 is borderline, where most sites say 40-59 is borderline.
MomOfMiles
New member
Does that mean the threshold for normal/borderline/positive is different for infants? I haven't seen that on anything I've read, though I have seen on some places that 30-59 is borderline, where most sites say 40-59 is borderline.
It's a gray area. My daughter's doctor said in an infant anything above 30 is questionable, that's why he ordered the full genetic test. I researched a lot over the past 9 months while all of this has been going on and ultimately I knew the answer could only be found with a full genetic test. Try not to drive yourself crazy with the internet research because for every person that has a sweat test in the normal and borderline range that has CF, others will not have CF or be a carrier. Only a genetic test will tell you for sure about your son. I know how hard the waiting and wondering is. It stinks!
It's a gray area. My daughter's doctor said in an infant anything above 30 is questionable, that's why he ordered the full genetic test. I researched a lot over the past 9 months while all of this has been going on and ultimately I knew the answer could only be found with a full genetic test. Try not to drive yourself crazy with the internet research because for every person that has a sweat test in the normal and borderline range that has CF, others will not have CF or be a carrier. Only a genetic test will tell you for sure about your son. I know how hard the waiting and wondering is. It stinks!
It's a gray area. My daughter's doctor said in an infant anything above 30 is questionable, that's why he ordered the full genetic test. I researched a lot over the past 9 months while all of this has been going on and ultimately I knew the answer could only be found with a full genetic test. Try not to drive yourself crazy with the internet research because for every person that has a sweat test in the normal and borderline range that has CF, others will not have CF or be a carrier. Only a genetic test will tell you for sure about your son. I know how hard the waiting and wondering is. It stinks!
It's a gray area. My daughter's doctor said in an infant anything above 30 is questionable, that's why he ordered the full genetic test. I researched a lot over the past 9 months while all of this has been going on and ultimately I knew the answer could only be found with a full genetic test. Try not to drive yourself crazy with the internet research because for every person that has a sweat test in the normal and borderline range that has CF, others will not have CF or be a carrier. Only a genetic test will tell you for sure about your son. I know how hard the waiting and wondering is. It stinks!
It's a gray area. My daughter's doctor said in an infant anything above 30 is questionable, that's why he ordered the full genetic test. I researched a lot over the past 9 months while all of this has been going on and ultimately I knew the answer could only be found with a full genetic test. Try not to drive yourself crazy with the internet research because for every person that has a sweat test in the normal and borderline range that has CF, others will not have CF or be a carrier. Only a genetic test will tell you for sure about your son. I know how hard the waiting and wondering is. It stinks!
M
Mommafirst
Guest
I don't the know the percentages of borderline that turn out to be CF. But my daughter had two borderlines (53 and 45) and we were told it was "suspicious". I hope you get some answers. CF is not fun, but having no answers is worse.
For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
M
Mommafirst
Guest
I don't the know the percentages of borderline that turn out to be CF. But my daughter had two borderlines (53 and 45) and we were told it was "suspicious". I hope you get some answers. CF is not fun, but having no answers is worse.
For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
M
Mommafirst
Guest
I don't the know the percentages of borderline that turn out to be CF. But my daughter had two borderlines (53 and 45) and we were told it was "suspicious". I hope you get some answers. CF is not fun, but having no answers is worse.
For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
M
Mommafirst
Guest
I don't the know the percentages of borderline that turn out to be CF. But my daughter had two borderlines (53 and 45) and we were told it was "suspicious". I hope you get some answers. CF is not fun, but having no answers is worse.
For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
M
Mommafirst
Guest
I don't the know the percentages of borderline that turn out to be CF. But my daughter had two borderlines (53 and 45) and we were told it was "suspicious". I hope you get some answers. CF is not fun, but having no answers is worse.
<br />
<br />For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.
<br />
<br />For what its worth, elevated sweat chloride is not 'normal'. I wouldn't accept a negative until you investigate any reason that would cause this elevated score.