Negative Sweat test at 8 months

S

Sofiaeden

New member
My daughter's sweat tests came back negative at 8 wks and 8 months. She was diagnosed with two CF mutations through the newborn screening and further genetic testing on myself and husband confirmed the diagnosis. Will she stay negative and if so what does that mean? I read on the CF Foundation website that once you are negative that's it. The results don't change. The doctors told me that some people test negative but have all the typical symptoms. She doesn't have symptoms at this time. However, we are still waiting to get the results from her throat culture and stool sample to see if she is PI (at 8 wks those tests also came back negative). I have asked her doctors these questions but they give me very vague answers

Thanks, Buna
 
S

Sofiaeden

New member
My daughter's sweat tests came back negative at 8 wks and 8 months. She was diagnosed with two CF mutations through the newborn screening and further genetic testing on myself and husband confirmed the diagnosis. Will she stay negative and if so what does that mean? I read on the CF Foundation website that once you are negative that's it. The results don't change. The doctors told me that some people test negative but have all the typical symptoms. She doesn't have symptoms at this time. However, we are still waiting to get the results from her throat culture and stool sample to see if she is PI (at 8 wks those tests also came back negative). I have asked her doctors these questions but they give me very vague answers

Thanks, Buna
 
S

Sofiaeden

New member
My daughter's sweat tests came back negative at 8 wks and 8 months. She was diagnosed with two CF mutations through the newborn screening and further genetic testing on myself and husband confirmed the diagnosis. Will she stay negative and if so what does that mean? I read on the CF Foundation website that once you are negative that's it. The results don't change. The doctors told me that some people test negative but have all the typical symptoms. She doesn't have symptoms at this time. However, we are still waiting to get the results from her throat culture and stool sample to see if she is PI (at 8 wks those tests also came back negative). I have asked her doctors these questions but they give me very vague answers

Thanks, Buna
 
S

Sofiaeden

New member
My daughter's sweat tests came back negative at 8 wks and 8 months. She was diagnosed with two CF mutations through the newborn screening and further genetic testing on myself and husband confirmed the diagnosis. Will she stay negative and if so what does that mean? I read on the CF Foundation website that once you are negative that's it. The results don't change. The doctors told me that some people test negative but have all the typical symptoms. She doesn't have symptoms at this time. However, we are still waiting to get the results from her throat culture and stool sample to see if she is PI (at 8 wks those tests also came back negative). I have asked her doctors these questions but they give me very vague answers

Thanks, Buna
 
S

Sofiaeden

New member
My daughter's sweat tests came back negative at 8 wks and 8 months. She was diagnosed with two CF mutations through the newborn screening and further genetic testing on myself and husband confirmed the diagnosis. Will she stay negative and if so what does that mean? I read on the CF Foundation website that once you are negative that's it. The results don't change. The doctors told me that some people test negative but have all the typical symptoms. She doesn't have symptoms at this time. However, we are still waiting to get the results from her throat culture and stool sample to see if she is PI (at 8 wks those tests also came back negative). I have asked her doctors these questions but they give me very vague answers
<br />
<br />Thanks, Buna
 
R

Ratatosk

Administrator
Staff member
When DS was 3 or 4 weeks old, his sweat test was a normal 32; however, his genetic blood test showed two copies of the delta f508 mutation. Was confusing to us. We wondered if it maybe was all just a big mistake.

I'm sure if he had a sweat test today it would show positive for CF. He craves salt, sweats copious amounts of it during the summer. He is PI, but most of his symptoms have been digestive; however, he has cultured pseudomonas a.
 
R

Ratatosk

Administrator
Staff member
When DS was 3 or 4 weeks old, his sweat test was a normal 32; however, his genetic blood test showed two copies of the delta f508 mutation. Was confusing to us. We wondered if it maybe was all just a big mistake.

I'm sure if he had a sweat test today it would show positive for CF. He craves salt, sweats copious amounts of it during the summer. He is PI, but most of his symptoms have been digestive; however, he has cultured pseudomonas a.
 
R

Ratatosk

Administrator
Staff member
When DS was 3 or 4 weeks old, his sweat test was a normal 32; however, his genetic blood test showed two copies of the delta f508 mutation. Was confusing to us. We wondered if it maybe was all just a big mistake.

I'm sure if he had a sweat test today it would show positive for CF. He craves salt, sweats copious amounts of it during the summer. He is PI, but most of his symptoms have been digestive; however, he has cultured pseudomonas a.
 
R

Ratatosk

Administrator
Staff member
When DS was 3 or 4 weeks old, his sweat test was a normal 32; however, his genetic blood test showed two copies of the delta f508 mutation. Was confusing to us. We wondered if it maybe was all just a big mistake.

I'm sure if he had a sweat test today it would show positive for CF. He craves salt, sweats copious amounts of it during the summer. He is PI, but most of his symptoms have been digestive; however, he has cultured pseudomonas a.
 
R

Ratatosk

Administrator
Staff member
When DS was 3 or 4 weeks old, his sweat test was a normal 32; however, his genetic blood test showed two copies of the delta f508 mutation. Was confusing to us. We wondered if it maybe was all just a big mistake.
<br />
<br />I'm sure if he had a sweat test today it would show positive for CF. He craves salt, sweats copious amounts of it during the summer. He is PI, but most of his symptoms have been digestive; however, he has cultured pseudomonas a.
 
J

just1more

New member
If your daughter has 2 mutations, then she has CF. Honestly, there is no reason to do sweat tests if you have genetic test confirmation. Sweat tests are not 100% reliable, and can vary based upon several factors.

As for symptoms, if she has none now, that is great. However, do understand that CF is progressive.

Over time things will change, and you may begin to see issues related to CF. The most important think is to always be proactive in treatments to delay the onset of more serious issues.
 
J

just1more

New member
If your daughter has 2 mutations, then she has CF. Honestly, there is no reason to do sweat tests if you have genetic test confirmation. Sweat tests are not 100% reliable, and can vary based upon several factors.

As for symptoms, if she has none now, that is great. However, do understand that CF is progressive.

Over time things will change, and you may begin to see issues related to CF. The most important think is to always be proactive in treatments to delay the onset of more serious issues.
 
J

just1more

New member
If your daughter has 2 mutations, then she has CF. Honestly, there is no reason to do sweat tests if you have genetic test confirmation. Sweat tests are not 100% reliable, and can vary based upon several factors.

As for symptoms, if she has none now, that is great. However, do understand that CF is progressive.

Over time things will change, and you may begin to see issues related to CF. The most important think is to always be proactive in treatments to delay the onset of more serious issues.
 
J

just1more

New member
If your daughter has 2 mutations, then she has CF. Honestly, there is no reason to do sweat tests if you have genetic test confirmation. Sweat tests are not 100% reliable, and can vary based upon several factors.

As for symptoms, if she has none now, that is great. However, do understand that CF is progressive.

Over time things will change, and you may begin to see issues related to CF. The most important think is to always be proactive in treatments to delay the onset of more serious issues.
 
J

just1more

New member
If your daughter has 2 mutations, then she has CF. Honestly, there is no reason to do sweat tests if you have genetic test confirmation. Sweat tests are not 100% reliable, and can vary based upon several factors.
<br />
<br />As for symptoms, if she has none now, that is great. However, do understand that CF is progressive.
<br />
<br />Over time things will change, and you may begin to see issues related to CF. The most important think is to always be proactive in treatments to delay the onset of more serious issues.
 
B

Buckeye

New member
Ditto to Tom.If she has two mutations then she should have been diagnosed with CF regardless of what the sweat test says. Not sure why they are so concerned about the sweat tests since the number itself is not indicative of the severity of CF.Have they started her on any typical CF meds?
 
B

Buckeye

New member
Ditto to Tom.If she has two mutations then she should have been diagnosed with CF regardless of what the sweat test says. Not sure why they are so concerned about the sweat tests since the number itself is not indicative of the severity of CF.Have they started her on any typical CF meds?
 
B

Buckeye

New member
Ditto to Tom.If she has two mutations then she should have been diagnosed with CF regardless of what the sweat test says. Not sure why they are so concerned about the sweat tests since the number itself is not indicative of the severity of CF.Have they started her on any typical CF meds?
 
B

Buckeye

New member
Ditto to Tom.If she has two mutations then she should have been diagnosed with CF regardless of what the sweat test says. Not sure why they are so concerned about the sweat tests since the number itself is not indicative of the severity of CF.Have they started her on any typical CF meds?
 
B

Buckeye

New member
Ditto to Tom.<p>If she has two mutations then she should have been diagnosed with CF regardless of what the sweat test says. Not sure why they are so concerned about the sweat tests since the number itself is not indicative of the severity of CF.<p>Have they started her on any typical CF meds?
 
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