You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Anyone had negative gene test?????
- Thread starter Catiesmom
- Start date
Emily65Roses
New member
Are you sure it tested for 90 PERCENT of CF genes and not just 90 CF genes? I'd be sure to double check on that. There are more than 1,000 CF genes, and the "better" (but not full) test covers 80-90 of them. (Not to mention it's really hard to get the full panel, insurance fights it tooth and nail because it's so expensive, so if you had the full panel done, you'll know it).
PS-- Amy's right, the sweat test is not more accurate than the genetic test. By any means.
PS-- Amy's right, the sweat test is not more accurate than the genetic test. By any means.
Emily65Roses
New member
Are you sure it tested for 90 PERCENT of CF genes and not just 90 CF genes? I'd be sure to double check on that. There are more than 1,000 CF genes, and the "better" (but not full) test covers 80-90 of them. (Not to mention it's really hard to get the full panel, insurance fights it tooth and nail because it's so expensive, so if you had the full panel done, you'll know it).
PS-- Amy's right, the sweat test is not more accurate than the genetic test. By any means.
PS-- Amy's right, the sweat test is not more accurate than the genetic test. By any means.
Emily65Roses
New member
Are you sure it tested for 90 PERCENT of CF genes and not just 90 CF genes? I'd be sure to double check on that. There are more than 1,000 CF genes, and the "better" (but not full) test covers 80-90 of them. (Not to mention it's really hard to get the full panel, insurance fights it tooth and nail because it's so expensive, so if you had the full panel done, you'll know it).
PS-- Amy's right, the sweat test is not more accurate than the genetic test. By any means.
PS-- Amy's right, the sweat test is not more accurate than the genetic test. By any means.
Justsmurfin
New member
i have to disagree about the sweat test.
My sweat test was over 100 but so far all the genetics testing I have had has only showed 1 DF508 mutation. Yet I still have a CF diagnosis based on my sweat test, clinical symptoms and that one mutation.
I know a family (the mom posts on ivillage) whose daughter has CF...positive sweat test, clinical symptoms and yet genetics testing has not identified any mutations. Ambry included
I know several other families whose kids had a diagnosis of CF based on sweat tests and symptoms. Only one or no known CF mutations. Still diagnosed based on the sweat test because at the time genetics testing only tested for 90 mutations at best. Ambry came along, so of course they did that testing. No mutations found. I know in atleast one of those cases the CF clinic refused to treat the child fo CF anymore and retracted the diagnosis. Poor kid got SO sick
when in doubt its better to treat it as cf
i agree the sweat test is a very valuable tool and i think should always be done, along with dna testing. as of now nowhere, not even ambry has identified or can identify all mutations
My sweat test was over 100 but so far all the genetics testing I have had has only showed 1 DF508 mutation. Yet I still have a CF diagnosis based on my sweat test, clinical symptoms and that one mutation.
I know a family (the mom posts on ivillage) whose daughter has CF...positive sweat test, clinical symptoms and yet genetics testing has not identified any mutations. Ambry included
I know several other families whose kids had a diagnosis of CF based on sweat tests and symptoms. Only one or no known CF mutations. Still diagnosed based on the sweat test because at the time genetics testing only tested for 90 mutations at best. Ambry came along, so of course they did that testing. No mutations found. I know in atleast one of those cases the CF clinic refused to treat the child fo CF anymore and retracted the diagnosis. Poor kid got SO sick
when in doubt its better to treat it as cf
i agree the sweat test is a very valuable tool and i think should always be done, along with dna testing. as of now nowhere, not even ambry has identified or can identify all mutations
Justsmurfin
New member
i have to disagree about the sweat test.
My sweat test was over 100 but so far all the genetics testing I have had has only showed 1 DF508 mutation. Yet I still have a CF diagnosis based on my sweat test, clinical symptoms and that one mutation.
I know a family (the mom posts on ivillage) whose daughter has CF...positive sweat test, clinical symptoms and yet genetics testing has not identified any mutations. Ambry included
I know several other families whose kids had a diagnosis of CF based on sweat tests and symptoms. Only one or no known CF mutations. Still diagnosed based on the sweat test because at the time genetics testing only tested for 90 mutations at best. Ambry came along, so of course they did that testing. No mutations found. I know in atleast one of those cases the CF clinic refused to treat the child fo CF anymore and retracted the diagnosis. Poor kid got SO sick
when in doubt its better to treat it as cf
i agree the sweat test is a very valuable tool and i think should always be done, along with dna testing. as of now nowhere, not even ambry has identified or can identify all mutations
My sweat test was over 100 but so far all the genetics testing I have had has only showed 1 DF508 mutation. Yet I still have a CF diagnosis based on my sweat test, clinical symptoms and that one mutation.
I know a family (the mom posts on ivillage) whose daughter has CF...positive sweat test, clinical symptoms and yet genetics testing has not identified any mutations. Ambry included
I know several other families whose kids had a diagnosis of CF based on sweat tests and symptoms. Only one or no known CF mutations. Still diagnosed based on the sweat test because at the time genetics testing only tested for 90 mutations at best. Ambry came along, so of course they did that testing. No mutations found. I know in atleast one of those cases the CF clinic refused to treat the child fo CF anymore and retracted the diagnosis. Poor kid got SO sick
when in doubt its better to treat it as cf
i agree the sweat test is a very valuable tool and i think should always be done, along with dna testing. as of now nowhere, not even ambry has identified or can identify all mutations
Justsmurfin
New member
i have to disagree about the sweat test.
My sweat test was over 100 but so far all the genetics testing I have had has only showed 1 DF508 mutation. Yet I still have a CF diagnosis based on my sweat test, clinical symptoms and that one mutation.
I know a family (the mom posts on ivillage) whose daughter has CF...positive sweat test, clinical symptoms and yet genetics testing has not identified any mutations. Ambry included
I know several other families whose kids had a diagnosis of CF based on sweat tests and symptoms. Only one or no known CF mutations. Still diagnosed based on the sweat test because at the time genetics testing only tested for 90 mutations at best. Ambry came along, so of course they did that testing. No mutations found. I know in atleast one of those cases the CF clinic refused to treat the child fo CF anymore and retracted the diagnosis. Poor kid got SO sick
when in doubt its better to treat it as cf
i agree the sweat test is a very valuable tool and i think should always be done, along with dna testing. as of now nowhere, not even ambry has identified or can identify all mutations
My sweat test was over 100 but so far all the genetics testing I have had has only showed 1 DF508 mutation. Yet I still have a CF diagnosis based on my sweat test, clinical symptoms and that one mutation.
I know a family (the mom posts on ivillage) whose daughter has CF...positive sweat test, clinical symptoms and yet genetics testing has not identified any mutations. Ambry included
I know several other families whose kids had a diagnosis of CF based on sweat tests and symptoms. Only one or no known CF mutations. Still diagnosed based on the sweat test because at the time genetics testing only tested for 90 mutations at best. Ambry came along, so of course they did that testing. No mutations found. I know in atleast one of those cases the CF clinic refused to treat the child fo CF anymore and retracted the diagnosis. Poor kid got SO sick
when in doubt its better to treat it as cf
i agree the sweat test is a very valuable tool and i think should always be done, along with dna testing. as of now nowhere, not even ambry has identified or can identify all mutations
My son tested positive twice on his sweat tests and has had 2 gene anaylsis done (extended panel, ambry) with no mutations found. His pulmo diagnosed him with CF. I think the sweat test is an important tool to use along with all the other tests and symptoms. As the other poster stated, make sure the sweat test is done at an acredited center and is done correctly.
Was your daughter being tested/diagnosed due to the newborn screening test?
Was your daughter being tested/diagnosed due to the newborn screening test?
My son tested positive twice on his sweat tests and has had 2 gene anaylsis done (extended panel, ambry) with no mutations found. His pulmo diagnosed him with CF. I think the sweat test is an important tool to use along with all the other tests and symptoms. As the other poster stated, make sure the sweat test is done at an acredited center and is done correctly.
Was your daughter being tested/diagnosed due to the newborn screening test?
Was your daughter being tested/diagnosed due to the newborn screening test?
My son tested positive twice on his sweat tests and has had 2 gene anaylsis done (extended panel, ambry) with no mutations found. His pulmo diagnosed him with CF. I think the sweat test is an important tool to use along with all the other tests and symptoms. As the other poster stated, make sure the sweat test is done at an acredited center and is done correctly.
Was your daughter being tested/diagnosed due to the newborn screening test?
Was your daughter being tested/diagnosed due to the newborn screening test?