Sweat test Results

J

jam0913

New member
We just got the results back for my two year old son...18 and 23. So for now they are ruling out CF. My concern is his symptoms still being what they are... he was hospitalized with sinusitis affecting every sinus cavity, he has had boughts of pneumonia and brinchitis, and is extremely underweight even though he eats like crazy and drinks milk constantly.
The plan is to test him for immuno-deficiencies that would leave him suceptable for all this respiartory/sinus stuff, and see how that turns out. My biggest fear is those tests coming back negative as well and then not having any explanation!
My question is, if this was your child, would you still be worried? I have read so many stories on this site about negative sweat test results on people who turned out to have CF. Any suggestions on this would be greatly appreciated!
 
J

jam0913

New member
We just got the results back for my two year old son...18 and 23. So for now they are ruling out CF. My concern is his symptoms still being what they are... he was hospitalized with sinusitis affecting every sinus cavity, he has had boughts of pneumonia and brinchitis, and is extremely underweight even though he eats like crazy and drinks milk constantly.
The plan is to test him for immuno-deficiencies that would leave him suceptable for all this respiartory/sinus stuff, and see how that turns out. My biggest fear is those tests coming back negative as well and then not having any explanation!
My question is, if this was your child, would you still be worried? I have read so many stories on this site about negative sweat test results on people who turned out to have CF. Any suggestions on this would be greatly appreciated!
 
J

jam0913

New member
We just got the results back for my two year old son...18 and 23. So for now they are ruling out CF. My concern is his symptoms still being what they are... he was hospitalized with sinusitis affecting every sinus cavity, he has had boughts of pneumonia and brinchitis, and is extremely underweight even though he eats like crazy and drinks milk constantly.
The plan is to test him for immuno-deficiencies that would leave him suceptable for all this respiartory/sinus stuff, and see how that turns out. My biggest fear is those tests coming back negative as well and then not having any explanation!
My question is, if this was your child, would you still be worried? I have read so many stories on this site about negative sweat test results on people who turned out to have CF. Any suggestions on this would be greatly appreciated!
 
F

folione

New member
Sure I'd be worried, but there are lots of factors way outside my knowledge that a Dr. is thinking about so I don't necessarily think your Dr. is wrong to look elsewhere when the sweat test came back well within normal (assuming the sweat was done by an accredited CF center - if not, you might want to get another one from a CF center as a first step).

But if insurance could be convinced to do the genetic test, I don't see why the Dr. would protest the idea. If you need the Dr. to convince the insurance Co. to cover the test, it might be a harder sell unless you've got some family history of CF or one parent is a known carrier.
 
F

folione

New member
Sure I'd be worried, but there are lots of factors way outside my knowledge that a Dr. is thinking about so I don't necessarily think your Dr. is wrong to look elsewhere when the sweat test came back well within normal (assuming the sweat was done by an accredited CF center - if not, you might want to get another one from a CF center as a first step).

But if insurance could be convinced to do the genetic test, I don't see why the Dr. would protest the idea. If you need the Dr. to convince the insurance Co. to cover the test, it might be a harder sell unless you've got some family history of CF or one parent is a known carrier.
 
F

folione

New member
Sure I'd be worried, but there are lots of factors way outside my knowledge that a Dr. is thinking about so I don't necessarily think your Dr. is wrong to look elsewhere when the sweat test came back well within normal (assuming the sweat was done by an accredited CF center - if not, you might want to get another one from a CF center as a first step).

But if insurance could be convinced to do the genetic test, I don't see why the Dr. would protest the idea. If you need the Dr. to convince the insurance Co. to cover the test, it might be a harder sell unless you've got some family history of CF or one parent is a known carrier.
 
A

Alyssa

New member
Yes, I would pursue a full panel from Ambry. Most people with questionable results are in the 30's - 40's (told they are negative then find out they do have CF) BUT there are a few people on here how are in the 20's (sweat test result) so it's not out of the realm of possibility.

Was the sweat test done at a CFF center?
 
A

Alyssa

New member
Yes, I would pursue a full panel from Ambry. Most people with questionable results are in the 30's - 40's (told they are negative then find out they do have CF) BUT there are a few people on here how are in the 20's (sweat test result) so it's not out of the realm of possibility.

Was the sweat test done at a CFF center?
 
A

Alyssa

New member
Yes, I would pursue a full panel from Ambry. Most people with questionable results are in the 30's - 40's (told they are negative then find out they do have CF) BUT there are a few people on here how are in the 20's (sweat test result) so it's not out of the realm of possibility.

Was the sweat test done at a CFF center?
 
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