waiting for results

amyr

New member
No, they had the initial cf mutation analysis through genzyme labs. According to my research the most that will include is 90 mutations. I can't be sure though. They did have a full immune system work up. (The first round) Their Dr. promised me he would keep testing until they find out what it is. I can't see how it isn't cf. I am preparing myself for normal initial results in the first round. I have resigned myself to the fact that this may be a very long process. I won't stop until i get answers. Any imput on the salt posting?
Thanks.
 

amyr

New member
No, they had the initial cf mutation analysis through genzyme labs. According to my research the most that will include is 90 mutations. I can't be sure though. They did have a full immune system work up. (The first round) Their Dr. promised me he would keep testing until they find out what it is. I can't see how it isn't cf. I am preparing myself for normal initial results in the first round. I have resigned myself to the fact that this may be a very long process. I won't stop until i get answers. Any imput on the salt posting?
Thanks.
 

amyr

New member
No, they had the initial cf mutation analysis through genzyme labs. According to my research the most that will include is 90 mutations. I can't be sure though. They did have a full immune system work up. (The first round) Their Dr. promised me he would keep testing until they find out what it is. I can't see how it isn't cf. I am preparing myself for normal initial results in the first round. I have resigned myself to the fact that this may be a very long process. I won't stop until i get answers. Any imput on the salt posting?
Thanks.
 

amyr

New member
No, they had the initial cf mutation analysis through genzyme labs. According to my research the most that will include is 90 mutations. I can't be sure though. They did have a full immune system work up. (The first round) Their Dr. promised me he would keep testing until they find out what it is. I can't see how it isn't cf. I am preparing myself for normal initial results in the first round. I have resigned myself to the fact that this may be a very long process. I won't stop until i get answers. Any imput on the salt posting?
Thanks.
 

amyr

New member
No, they had the initial cf mutation analysis through genzyme labs. According to my research the most that will include is 90 mutations. I can't be sure though. They did have a full immune system work up. (The first round) Their Dr. promised me he would keep testing until they find out what it is. I can't see how it isn't cf. I am preparing myself for normal initial results in the first round. I have resigned myself to the fact that this may be a very long process. I won't stop until i get answers. Any imput on the salt posting?
Thanks.
 

jodyh

New member
Hi-
I'm new. My 14 yr old daughter has had 2 sweat tests. Her numbers were 44 and 78. The pulmanologist told us he wants to do DNA testing next. We are so confused. Lauren has exercise induced asthma - that's it. She has never had any CF symptoms - never been hospitalized for anything. Lauren is a healthy teenage girl who plays travel softball and is very active. The pulmanologist told us he has to do sweat tests on all of his ptns to rule out CF. You can imagine how surprised we were to hear these numbers.
Has anyone ever heard of someone having CF and being completely asymptomatic for the first 14 yrs of their life?
 

jodyh

New member
Hi-
I'm new. My 14 yr old daughter has had 2 sweat tests. Her numbers were 44 and 78. The pulmanologist told us he wants to do DNA testing next. We are so confused. Lauren has exercise induced asthma - that's it. She has never had any CF symptoms - never been hospitalized for anything. Lauren is a healthy teenage girl who plays travel softball and is very active. The pulmanologist told us he has to do sweat tests on all of his ptns to rule out CF. You can imagine how surprised we were to hear these numbers.
Has anyone ever heard of someone having CF and being completely asymptomatic for the first 14 yrs of their life?
 

jodyh

New member
Hi-
I'm new. My 14 yr old daughter has had 2 sweat tests. Her numbers were 44 and 78. The pulmanologist told us he wants to do DNA testing next. We are so confused. Lauren has exercise induced asthma - that's it. She has never had any CF symptoms - never been hospitalized for anything. Lauren is a healthy teenage girl who plays travel softball and is very active. The pulmanologist told us he has to do sweat tests on all of his ptns to rule out CF. You can imagine how surprised we were to hear these numbers.
Has anyone ever heard of someone having CF and being completely asymptomatic for the first 14 yrs of their life?
 

jodyh

New member
Hi-
I'm new. My 14 yr old daughter has had 2 sweat tests. Her numbers were 44 and 78. The pulmanologist told us he wants to do DNA testing next. We are so confused. Lauren has exercise induced asthma - that's it. She has never had any CF symptoms - never been hospitalized for anything. Lauren is a healthy teenage girl who plays travel softball and is very active. The pulmanologist told us he has to do sweat tests on all of his ptns to rule out CF. You can imagine how surprised we were to hear these numbers.
Has anyone ever heard of someone having CF and being completely asymptomatic for the first 14 yrs of their life?
 

jodyh

New member
Hi-
<br />I'm new. My 14 yr old daughter has had 2 sweat tests. Her numbers were 44 and 78. The pulmanologist told us he wants to do DNA testing next. We are so confused. Lauren has exercise induced asthma - that's it. She has never had any CF symptoms - never been hospitalized for anything. Lauren is a healthy teenage girl who plays travel softball and is very active. The pulmanologist told us he has to do sweat tests on all of his ptns to rule out CF. You can imagine how surprised we were to hear these numbers.
<br />Has anyone ever heard of someone having CF and being completely asymptomatic for the first 14 yrs of their life?
 

Alyssa

New member
Unfortunately (or fortunately -- depending on how you look at it) it is possible for a person to go 14 years without any CF symptoms.

While the 44 is in the borderline area (which still usually means positive) and the 78 is clearly positive, it seems quite possible they will find two CF genes in the DNA test (assuming that they test for all 1600 of them rather than just a smaller screening, testing for only 89 or so)

You can read my blog for more details, but the short story is, my kids have very few CF symptoms. Our daughter was misdiagnosed because her sweat test number is 38 (normal) and she had so few symptoms, nobody thought it could be CF. My son didn't show any symptoms until age 21 years. Both kids are pancreatic sufficient so they do not have any digestive or weight gain issues.

I have met a lot of people online with the same gene combination as my kids Delta F508 and R117H -- more often than not, all of these people have late onset symptoms, are pancreatic sufficient and generally are in very good health.

So in short -- yes I think it is very possible for someone to go 14 years w/o symptoms and still have CF. I'm sure if you started your own post and posted it in family and adult section you would get a lot of replies similar to mine.
 

Alyssa

New member
Unfortunately (or fortunately -- depending on how you look at it) it is possible for a person to go 14 years without any CF symptoms.

While the 44 is in the borderline area (which still usually means positive) and the 78 is clearly positive, it seems quite possible they will find two CF genes in the DNA test (assuming that they test for all 1600 of them rather than just a smaller screening, testing for only 89 or so)

You can read my blog for more details, but the short story is, my kids have very few CF symptoms. Our daughter was misdiagnosed because her sweat test number is 38 (normal) and she had so few symptoms, nobody thought it could be CF. My son didn't show any symptoms until age 21 years. Both kids are pancreatic sufficient so they do not have any digestive or weight gain issues.

I have met a lot of people online with the same gene combination as my kids Delta F508 and R117H -- more often than not, all of these people have late onset symptoms, are pancreatic sufficient and generally are in very good health.

So in short -- yes I think it is very possible for someone to go 14 years w/o symptoms and still have CF. I'm sure if you started your own post and posted it in family and adult section you would get a lot of replies similar to mine.
 

Alyssa

New member
Unfortunately (or fortunately -- depending on how you look at it) it is possible for a person to go 14 years without any CF symptoms.

While the 44 is in the borderline area (which still usually means positive) and the 78 is clearly positive, it seems quite possible they will find two CF genes in the DNA test (assuming that they test for all 1600 of them rather than just a smaller screening, testing for only 89 or so)

You can read my blog for more details, but the short story is, my kids have very few CF symptoms. Our daughter was misdiagnosed because her sweat test number is 38 (normal) and she had so few symptoms, nobody thought it could be CF. My son didn't show any symptoms until age 21 years. Both kids are pancreatic sufficient so they do not have any digestive or weight gain issues.

I have met a lot of people online with the same gene combination as my kids Delta F508 and R117H -- more often than not, all of these people have late onset symptoms, are pancreatic sufficient and generally are in very good health.

So in short -- yes I think it is very possible for someone to go 14 years w/o symptoms and still have CF. I'm sure if you started your own post and posted it in family and adult section you would get a lot of replies similar to mine.
 

Alyssa

New member
Unfortunately (or fortunately -- depending on how you look at it) it is possible for a person to go 14 years without any CF symptoms.

While the 44 is in the borderline area (which still usually means positive) and the 78 is clearly positive, it seems quite possible they will find two CF genes in the DNA test (assuming that they test for all 1600 of them rather than just a smaller screening, testing for only 89 or so)

You can read my blog for more details, but the short story is, my kids have very few CF symptoms. Our daughter was misdiagnosed because her sweat test number is 38 (normal) and she had so few symptoms, nobody thought it could be CF. My son didn't show any symptoms until age 21 years. Both kids are pancreatic sufficient so they do not have any digestive or weight gain issues.

I have met a lot of people online with the same gene combination as my kids Delta F508 and R117H -- more often than not, all of these people have late onset symptoms, are pancreatic sufficient and generally are in very good health.

So in short -- yes I think it is very possible for someone to go 14 years w/o symptoms and still have CF. I'm sure if you started your own post and posted it in family and adult section you would get a lot of replies similar to mine.
 

Alyssa

New member
Unfortunately (or fortunately -- depending on how you look at it) it is possible for a person to go 14 years without any CF symptoms.
<br />
<br />While the 44 is in the borderline area (which still usually means positive) and the 78 is clearly positive, it seems quite possible they will find two CF genes in the DNA test (assuming that they test for all 1600 of them rather than just a smaller screening, testing for only 89 or so)
<br />
<br />You can read my blog for more details, but the short story is, my kids have very few CF symptoms. Our daughter was misdiagnosed because her sweat test number is 38 (normal) and she had so few symptoms, nobody thought it could be CF. My son didn't show any symptoms until age 21 years. Both kids are pancreatic sufficient so they do not have any digestive or weight gain issues.
<br />
<br />I have met a lot of people online with the same gene combination as my kids Delta F508 and R117H -- more often than not, all of these people have late onset symptoms, are pancreatic sufficient and generally are in very good health.
<br />
<br />So in short -- yes I think it is very possible for someone to go 14 years w/o symptoms and still have CF. I'm sure if you started your own post and posted it in family and adult section you would get a lot of replies similar to mine.
 
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