Sweat testing ??'s

T

tinamarie11

New member
My boyfriend's 3 year old is having a 2nd sweat test tomorrow. Her first one had borderline results. Does this mean she has it? Does the 2nd test confirm or deny the findings or check for the severity of it assuming that she has it? I don't know what her borderline number was either. Any info would be appreciated!
 
T

tinamarie11

New member
My boyfriend's 3 year old is having a 2nd sweat test tomorrow. Her first one had borderline results. Does this mean she has it? Does the 2nd test confirm or deny the findings or check for the severity of it assuming that she has it? I don't know what her borderline number was either. Any info would be appreciated!
 
T

tinamarie11

New member
My boyfriend's 3 year old is having a 2nd sweat test tomorrow. Her first one had borderline results. Does this mean she has it? Does the 2nd test confirm or deny the findings or check for the severity of it assuming that she has it? I don't know what her borderline number was either. Any info would be appreciated!
 
M

Mommafirst

Guest
Borderline results are really frustrating, because it just doesn't tell you much of anything. Regardless of the results of this second test, I'd think they might want to consider genetic testing, as how do you know which test was comprimised. My daughter had two borderline results, and then needed genetic testing to get a diagnosis. There are even folks on here who had negative sweats and genetics revealed a diagnosis. But on the other hand, a borderline result is not necessarily a CF diagnosis. <br>
<br>
Does his daughter have symptoms that are prompting the testing -- I would assume so. In that case, I'd make sure to press to get the genetics done to either confirm or rule out a diagnosis.<br>
<br>
And as for your question about severity: from everything I've read, there is no correlation between the number one gets on the sweat test and the severity of the illness.
 
M

Mommafirst

Guest
Borderline results are really frustrating, because it just doesn't tell you much of anything. Regardless of the results of this second test, I'd think they might want to consider genetic testing, as how do you know which test was comprimised. My daughter had two borderline results, and then needed genetic testing to get a diagnosis. There are even folks on here who had negative sweats and genetics revealed a diagnosis. But on the other hand, a borderline result is not necessarily a CF diagnosis. <br>
<br>
Does his daughter have symptoms that are prompting the testing -- I would assume so. In that case, I'd make sure to press to get the genetics done to either confirm or rule out a diagnosis.<br>
<br>
And as for your question about severity: from everything I've read, there is no correlation between the number one gets on the sweat test and the severity of the illness.
 
M

Mommafirst

Guest
Borderline results are really frustrating, because it just doesn't tell you much of anything. Regardless of the results of this second test, I'd think they might want to consider genetic testing, as how do you know which test was comprimised. My daughter had two borderline results, and then needed genetic testing to get a diagnosis. There are even folks on here who had negative sweats and genetics revealed a diagnosis. But on the other hand, a borderline result is not necessarily a CF diagnosis. <br>
<br>
Does his daughter have symptoms that are prompting the testing -- I would assume so. In that case, I'd make sure to press to get the genetics done to either confirm or rule out a diagnosis.<br>
<br>
And as for your question about severity: from everything I've read, there is no correlation between the number one gets on the sweat test and the severity of the illness.
 
O

okok

New member
I could be wrong about this but from what i have read often normal or borderline sweat chloride values occur in cases of atypical CF and in this case the disease progression MAY be less severe. I think this is a very difficult thing to say statistically speaking however since it is very recently that genetic testing has been able to confirm a CF diagnosis in individuals with borderline or normal sweat chloride values. Genetic testing has only been around since 1989 (if i remeber correctly) which is not even the current lifespan of a single CF individual so that makes these types of correlations hard to confirm statistically. Also there are so many factors which can contribute to the severity of disease progression that are independant of a person's unique physiology and genetics. For instance, a person who has atypical CF may go for a long time without a CF diagnosis and therefore not have access to preventative measures that someone who has a more severe form of the disease has had access to their whole life. For this reason, they may have just as many lung problems as someone with a more severe disease form. so you see this also interferes with the statistics... Exersize can play a huge role in keeping lungs healthy. I recently read an article on pubmed about these german twins who were in their fifties and did tons of running. They were very healthy and suffered from very few disease complications. The doctors hypothesized that in addition to genetics exersize played a crucial role in their good health. There are modifier genes too which play a role in the disease severity so that someone who has CF alleles commony associated with mild disease progression can have modifier genes which work against them to influence the disease progression in a more severe direction. there are so many factors affecting how the disease progresses that it really is very difficult to predict....
 
O

okok

New member
I could be wrong about this but from what i have read often normal or borderline sweat chloride values occur in cases of atypical CF and in this case the disease progression MAY be less severe. I think this is a very difficult thing to say statistically speaking however since it is very recently that genetic testing has been able to confirm a CF diagnosis in individuals with borderline or normal sweat chloride values. Genetic testing has only been around since 1989 (if i remeber correctly) which is not even the current lifespan of a single CF individual so that makes these types of correlations hard to confirm statistically. Also there are so many factors which can contribute to the severity of disease progression that are independant of a person's unique physiology and genetics. For instance, a person who has atypical CF may go for a long time without a CF diagnosis and therefore not have access to preventative measures that someone who has a more severe form of the disease has had access to their whole life. For this reason, they may have just as many lung problems as someone with a more severe disease form. so you see this also interferes with the statistics... Exersize can play a huge role in keeping lungs healthy. I recently read an article on pubmed about these german twins who were in their fifties and did tons of running. They were very healthy and suffered from very few disease complications. The doctors hypothesized that in addition to genetics exersize played a crucial role in their good health. There are modifier genes too which play a role in the disease severity so that someone who has CF alleles commony associated with mild disease progression can have modifier genes which work against them to influence the disease progression in a more severe direction. there are so many factors affecting how the disease progresses that it really is very difficult to predict....
 
O

okok

New member
I could be wrong about this but from what i have read often normal or borderline sweat chloride values occur in cases of atypical CF and in this case the disease progression MAY be less severe. I think this is a very difficult thing to say statistically speaking however since it is very recently that genetic testing has been able to confirm a CF diagnosis in individuals with borderline or normal sweat chloride values. Genetic testing has only been around since 1989 (if i remeber correctly) which is not even the current lifespan of a single CF individual so that makes these types of correlations hard to confirm statistically. Also there are so many factors which can contribute to the severity of disease progression that are independant of a person's unique physiology and genetics. For instance, a person who has atypical CF may go for a long time without a CF diagnosis and therefore not have access to preventative measures that someone who has a more severe form of the disease has had access to their whole life. For this reason, they may have just as many lung problems as someone with a more severe disease form. so you see this also interferes with the statistics... Exersize can play a huge role in keeping lungs healthy. I recently read an article on pubmed about these german twins who were in their fifties and did tons of running. They were very healthy and suffered from very few disease complications. The doctors hypothesized that in addition to genetics exersize played a crucial role in their good health. There are modifier genes too which play a role in the disease severity so that someone who has CF alleles commony associated with mild disease progression can have modifier genes which work against them to influence the disease progression in a more severe direction. there are so many factors affecting how the disease progresses that it really is very difficult to predict....
 
T

tinamarie11

New member
She switched pediatricians at the end of the year. She has been having allergy type problems and they tested her in the spring and found she was allergic to everything outdoors. So, we started some medicines and things were better until the fall. It seems she's had continuous sinus infections. The day after New Year's, she went back to the Dr. for a fever and they found strep throat. But something - I'm not sure what, she went with her mother - prompted them to draw blood and take urine. The urine showed blood and her blood sugar was high. They took another glucose test a few days later and it came back fine, but they wanted a sweat test last week. On Wed, the results came back borderline and on Monday (22nd) they go to Ann Arbor for the 2nd sweat test. She doesn't really have many of the symptoms that we know of...
 
T

tinamarie11

New member
She switched pediatricians at the end of the year. She has been having allergy type problems and they tested her in the spring and found she was allergic to everything outdoors. So, we started some medicines and things were better until the fall. It seems she's had continuous sinus infections. The day after New Year's, she went back to the Dr. for a fever and they found strep throat. But something - I'm not sure what, she went with her mother - prompted them to draw blood and take urine. The urine showed blood and her blood sugar was high. They took another glucose test a few days later and it came back fine, but they wanted a sweat test last week. On Wed, the results came back borderline and on Monday (22nd) they go to Ann Arbor for the 2nd sweat test. She doesn't really have many of the symptoms that we know of...
 
T

tinamarie11

New member
She switched pediatricians at the end of the year. She has been having allergy type problems and they tested her in the spring and found she was allergic to everything outdoors. So, we started some medicines and things were better until the fall. It seems she's had continuous sinus infections. The day after New Year's, she went back to the Dr. for a fever and they found strep throat. But something - I'm not sure what, she went with her mother - prompted them to draw blood and take urine. The urine showed blood and her blood sugar was high. They took another glucose test a few days later and it came back fine, but they wanted a sweat test last week. On Wed, the results came back borderline and on Monday (22nd) they go to Ann Arbor for the 2nd sweat test. She doesn't really have many of the symptoms that we know of...
 
A

Alyssa

New member
read my blog for more info on sweat testing and our story about getting my kids diagnosed. (link in my signature line)

Yes, there is some truth to "mild variant genes, producing normal or borderline sweat test results" but just like everything else about CF it's not a hard and fast rule. There are people out there with double Delta F508 genes with "normal sweat test numbers"

No, there is no correlation between the sweat test number and the severity of the disease, unless of course you get one of the "mild variant genes" along with a normal/borderline sweat test number (like my kids) then yes you might have a mild case, or a mild case for a lot of years, but there are still no guarantees about that.

The sweat test is probably being repeated to see if it falls in the same number range again. Regardless of what the results are I would insist on FULL genetic testing. It is the best way to find out for sure (well almost for sure, because it is possible to still have CF and not find both genes, but that's a discussion for another time) Anyway insist on full testing, looking for all 1500 genes -- don't settle for any of the less extensive tests. You need to know for sure if she has CF or not - it will change the treatments that she gets, and it's always better to know what you are treating and to treat it right early on. My daughter was misdiagnosed with "asthma" for 8 years because nobody did genetic testing because her sweat test was normal !!!
 
A

Alyssa

New member
read my blog for more info on sweat testing and our story about getting my kids diagnosed. (link in my signature line)

Yes, there is some truth to "mild variant genes, producing normal or borderline sweat test results" but just like everything else about CF it's not a hard and fast rule. There are people out there with double Delta F508 genes with "normal sweat test numbers"

No, there is no correlation between the sweat test number and the severity of the disease, unless of course you get one of the "mild variant genes" along with a normal/borderline sweat test number (like my kids) then yes you might have a mild case, or a mild case for a lot of years, but there are still no guarantees about that.

The sweat test is probably being repeated to see if it falls in the same number range again. Regardless of what the results are I would insist on FULL genetic testing. It is the best way to find out for sure (well almost for sure, because it is possible to still have CF and not find both genes, but that's a discussion for another time) Anyway insist on full testing, looking for all 1500 genes -- don't settle for any of the less extensive tests. You need to know for sure if she has CF or not - it will change the treatments that she gets, and it's always better to know what you are treating and to treat it right early on. My daughter was misdiagnosed with "asthma" for 8 years because nobody did genetic testing because her sweat test was normal !!!
 
A

Alyssa

New member
read my blog for more info on sweat testing and our story about getting my kids diagnosed. (link in my signature line)

Yes, there is some truth to "mild variant genes, producing normal or borderline sweat test results" but just like everything else about CF it's not a hard and fast rule. There are people out there with double Delta F508 genes with "normal sweat test numbers"

No, there is no correlation between the sweat test number and the severity of the disease, unless of course you get one of the "mild variant genes" along with a normal/borderline sweat test number (like my kids) then yes you might have a mild case, or a mild case for a lot of years, but there are still no guarantees about that.

The sweat test is probably being repeated to see if it falls in the same number range again. Regardless of what the results are I would insist on FULL genetic testing. It is the best way to find out for sure (well almost for sure, because it is possible to still have CF and not find both genes, but that's a discussion for another time) Anyway insist on full testing, looking for all 1500 genes -- don't settle for any of the less extensive tests. You need to know for sure if she has CF or not - it will change the treatments that she gets, and it's always better to know what you are treating and to treat it right early on. My daughter was misdiagnosed with "asthma" for 8 years because nobody did genetic testing because her sweat test was normal !!!
 
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