still in the dark

H

happymomof4kids

New member
My daughter had a 97panel genetic test done and it came back negative. She has had 3 sweat test done. Her first one was 41, second one 60, and her third one was 50.

She had a pulmonary test done and she tested below normal.
She had a 29 and ten minutes after a breathing treatment she had a 41.

They said she should test 80%, she test 75%.

She goes for another pulmonary test tomorrow.

Just not sure how to take all this. They told me 60 was positive but her genetic test says she is negative.

Anyone have any thoughts or had the same thing with their child. Please Please leave your thoughts.
 
H

happymomof4kids

New member
My daughter had a 97panel genetic test done and it came back negative. She has had 3 sweat test done. Her first one was 41, second one 60, and her third one was 50.

She had a pulmonary test done and she tested below normal.
She had a 29 and ten minutes after a breathing treatment she had a 41.

They said she should test 80%, she test 75%.

She goes for another pulmonary test tomorrow.

Just not sure how to take all this. They told me 60 was positive but her genetic test says she is negative.

Anyone have any thoughts or had the same thing with their child. Please Please leave your thoughts.
 
H

happymomof4kids

New member
My daughter had a 97panel genetic test done and it came back negative. She has had 3 sweat test done. Her first one was 41, second one 60, and her third one was 50.

She had a pulmonary test done and she tested below normal.
She had a 29 and ten minutes after a breathing treatment she had a 41.

They said she should test 80%, she test 75%.

She goes for another pulmonary test tomorrow.

Just not sure how to take all this. They told me 60 was positive but her genetic test says she is negative.

Anyone have any thoughts or had the same thing with their child. Please Please leave your thoughts.
 
H

happymomof4kids

New member
My daughter had a 97panel genetic test done and it came back negative. She has had 3 sweat test done. Her first one was 41, second one 60, and her third one was 50.

She had a pulmonary test done and she tested below normal.
She had a 29 and ten minutes after a breathing treatment she had a 41.

They said she should test 80%, she test 75%.

She goes for another pulmonary test tomorrow.

Just not sure how to take all this. They told me 60 was positive but her genetic test says she is negative.

Anyone have any thoughts or had the same thing with their child. Please Please leave your thoughts.
 
H

happymomof4kids

New member
My daughter had a 97panel genetic test done and it came back negative. She has had 3 sweat test done. Her first one was 41, second one 60, and her third one was 50.
<br />
<br />She had a pulmonary test done and she tested below normal.
<br />She had a 29 and ten minutes after a breathing treatment she had a 41.
<br />
<br />They said she should test 80%, she test 75%.
<br />
<br />She goes for another pulmonary test tomorrow.
<br />
<br />Just not sure how to take all this. They told me 60 was positive but her genetic test says she is negative.
<br />
<br />Anyone have any thoughts or had the same thing with their child. Please Please leave your thoughts.
 
B

Buckeye

New member
I wouldn't say the genetics are negative until you test for all currently known mutations. There are some 1500+ mutations known so far and you only tested for 97 of them - if my accounting brain is working tonight that is only 6% of them.
 
B

Buckeye

New member
I wouldn't say the genetics are negative until you test for all currently known mutations. There are some 1500+ mutations known so far and you only tested for 97 of them - if my accounting brain is working tonight that is only 6% of them.
 
B

Buckeye

New member
I wouldn't say the genetics are negative until you test for all currently known mutations. There are some 1500+ mutations known so far and you only tested for 97 of them - if my accounting brain is working tonight that is only 6% of them.
 
B

Buckeye

New member
I wouldn't say the genetics are negative until you test for all currently known mutations. There are some 1500+ mutations known so far and you only tested for 97 of them - if my accounting brain is working tonight that is only 6% of them.
 
B

Buckeye

New member
I wouldn't say the genetics are negative until you test for all currently known mutations. There are some 1500+ mutations known so far and you only tested for 97 of them - if my accounting brain is working tonight that is only 6% of them.
 
V

valigirl21

Guest
I can totally relate! My son had 3 sweat tests, 41,44,43, respectively. His full panel Ambry is neg, though the del/dup was not done. He is, however, VERY symptomatic. I learned early on not to place too much stock in PFT's for young kids. They haven't quite got the rhythmn down that produces an accurate reading. My son is what I fondly refer to as an "as if..." He is treated as if he has CF, b/c he doesn't have a high enough sweat chloride or +genetics. Which, they tell me, only means they may not have discovered his mutation yet. But, he is PI, respiratory issues, FTT, etc that goes w/ CF. Keep on them about the Full panel Ambry.

Just curious is your daughter symptomatic? What symptoms does she have?
 
V

valigirl21

Guest
I can totally relate! My son had 3 sweat tests, 41,44,43, respectively. His full panel Ambry is neg, though the del/dup was not done. He is, however, VERY symptomatic. I learned early on not to place too much stock in PFT's for young kids. They haven't quite got the rhythmn down that produces an accurate reading. My son is what I fondly refer to as an "as if..." He is treated as if he has CF, b/c he doesn't have a high enough sweat chloride or +genetics. Which, they tell me, only means they may not have discovered his mutation yet. But, he is PI, respiratory issues, FTT, etc that goes w/ CF. Keep on them about the Full panel Ambry.

Just curious is your daughter symptomatic? What symptoms does she have?
 
V

valigirl21

Guest
I can totally relate! My son had 3 sweat tests, 41,44,43, respectively. His full panel Ambry is neg, though the del/dup was not done. He is, however, VERY symptomatic. I learned early on not to place too much stock in PFT's for young kids. They haven't quite got the rhythmn down that produces an accurate reading. My son is what I fondly refer to as an "as if..." He is treated as if he has CF, b/c he doesn't have a high enough sweat chloride or +genetics. Which, they tell me, only means they may not have discovered his mutation yet. But, he is PI, respiratory issues, FTT, etc that goes w/ CF. Keep on them about the Full panel Ambry.

Just curious is your daughter symptomatic? What symptoms does she have?
 
V

valigirl21

Guest
I can totally relate! My son had 3 sweat tests, 41,44,43, respectively. His full panel Ambry is neg, though the del/dup was not done. He is, however, VERY symptomatic. I learned early on not to place too much stock in PFT's for young kids. They haven't quite got the rhythmn down that produces an accurate reading. My son is what I fondly refer to as an "as if..." He is treated as if he has CF, b/c he doesn't have a high enough sweat chloride or +genetics. Which, they tell me, only means they may not have discovered his mutation yet. But, he is PI, respiratory issues, FTT, etc that goes w/ CF. Keep on them about the Full panel Ambry.

Just curious is your daughter symptomatic? What symptoms does she have?
 
V

valigirl21

Guest
I can totally relate! My son had 3 sweat tests, 41,44,43, respectively. His full panel Ambry is neg, though the del/dup was not done. He is, however, VERY symptomatic. I learned early on not to place too much stock in PFT's for young kids. They haven't quite got the rhythmn down that produces an accurate reading. My son is what I fondly refer to as an "as if..." He is treated as if he has CF, b/c he doesn't have a high enough sweat chloride or +genetics. Which, they tell me, only means they may not have discovered his mutation yet. But, he is PI, respiratory issues, FTT, etc that goes w/ CF. Keep on them about the Full panel Ambry.
<br />
<br />Just curious is your daughter symptomatic? What symptoms does she have?
 
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