Quick question

CJPsMom

New member
I have been corresponding with a mom of a 16 month old who is presenting classic CF symptoms - respiratory problems, mucous in stomach & stool, FTT, vitamin ADEK deficiency.  They had a sweat test yesterday that was normal.<br><br>She seems very relieved that it's not CF based on this test.  She doesn't know much about CF and I've been helping her along and I don't know whether to tell her that's great he doesn't have CF or should I tell her to push for the genetic testing.  <br><br>I don't know this woman personally, just corresponding via email, but just want to give the best guidance.<br><br>So, anyone have a normal sweat test and still have CF?<br>
 

CJPsMom

New member
I have been corresponding with a mom of a 16 month old who is presenting classic CF symptoms - respiratory problems, mucous in stomach & stool, FTT, vitamin ADEK deficiency. They had a sweat test yesterday that was normal.<br><br>She seems very relieved that it's not CF based on this test. She doesn't know much about CF and I've been helping her along and I don't know whether to tell her that's great he doesn't have CF or should I tell her to push for the genetic testing. <br><br>I don't know this woman personally, just corresponding via email, but just want to give the best guidance.<br><br>So, anyone have a normal sweat test and still have CF?<br>
 

CJPsMom

New member
I have been corresponding with a mom of a 16 month old who is presenting classic CF symptoms - respiratory problems, mucous in stomach & stool, FTT, vitamin ADEK deficiency. They had a sweat test yesterday that was normal.<br><br>She seems very relieved that it's not CF based on this test. She doesn't know much about CF and I've been helping her along and I don't know whether to tell her that's great he doesn't have CF or should I tell her to push for the genetic testing. <br><br>I don't know this woman personally, just corresponding via email, but just want to give the best guidance.<br><br>So, anyone have a normal sweat test and still have CF?<br>
 

Ratatosk

Administrator
Staff member
DS had a normal sweat test -- 32 when he was 3-4 weeks old. If done to day, I suspect the results would be much different as he's very salty. I've come across this issue as well. Sometimes all you can do is encourage them to pursue more testing, indicate that even if it's not CF, there is something going on with her child and she should push for answers.

DH has a cousin whose daughter is in college who had "the test" as her parents refer to the sweat test -- while she's doesn't have digestive issues and isn't very slim -- she had asthma type issues as a child, any cold turns into bronchitis and she pretty much takes an expectorant or cough syrup at night a good part of the time.
 

Ratatosk

Administrator
Staff member
DS had a normal sweat test -- 32 when he was 3-4 weeks old. If done to day, I suspect the results would be much different as he's very salty. I've come across this issue as well. Sometimes all you can do is encourage them to pursue more testing, indicate that even if it's not CF, there is something going on with her child and she should push for answers.

DH has a cousin whose daughter is in college who had "the test" as her parents refer to the sweat test -- while she's doesn't have digestive issues and isn't very slim -- she had asthma type issues as a child, any cold turns into bronchitis and she pretty much takes an expectorant or cough syrup at night a good part of the time.
 

Ratatosk

Administrator
Staff member
DS had a normal sweat test -- 32 when he was 3-4 weeks old. If done to day, I suspect the results would be much different as he's very salty. I've come across this issue as well. Sometimes all you can do is encourage them to pursue more testing, indicate that even if it's not CF, there is something going on with her child and she should push for answers.
<br />
<br />DH has a cousin whose daughter is in college who had "the test" as her parents refer to the sweat test -- while she's doesn't have digestive issues and isn't very slim -- she had asthma type issues as a child, any cold turns into bronchitis and she pretty much takes an expectorant or cough syrup at night a good part of the time.
 
M

Mommafirst

Guest
Yes, you can still have CF. At the National CF conference they showed a slide of the variation of sweat scores for kids with the same exact mutations. DDF508 kids varied from lower than 40 to highs up in the 140's, with a mean around 103. If the child has mutations that don't completely suppress the CFTR, it is very possible that they can have a "normal" sweat score and still have CF. Genetics and clinical symptoms are an important part of diagnostics for CF.
 
M

Mommafirst

Guest
Yes, you can still have CF. At the National CF conference they showed a slide of the variation of sweat scores for kids with the same exact mutations. DDF508 kids varied from lower than 40 to highs up in the 140's, with a mean around 103. If the child has mutations that don't completely suppress the CFTR, it is very possible that they can have a "normal" sweat score and still have CF. Genetics and clinical symptoms are an important part of diagnostics for CF.
 
M

Mommafirst

Guest
Yes, you can still have CF. At the National CF conference they showed a slide of the variation of sweat scores for kids with the same exact mutations. DDF508 kids varied from lower than 40 to highs up in the 140's, with a mean around 103. If the child has mutations that don't completely suppress the CFTR, it is very possible that they can have a "normal" sweat score and still have CF. Genetics and clinical symptoms are an important part of diagnostics for CF.
 

CJPsMom

New member
Thanks for the info! We didn't have to go through that, so I wasn't sure if it was a definite diagnosis or if I should encourage her to get additional testing. I'd just hate for the little guy to have CF and not be appropriately treated.
 

CJPsMom

New member
Thanks for the info! We didn't have to go through that, so I wasn't sure if it was a definite diagnosis or if I should encourage her to get additional testing. I'd just hate for the little guy to have CF and not be appropriately treated.
 

CJPsMom

New member
Thanks for the info! We didn't have to go through that, so I wasn't sure if it was a definite diagnosis or if I should encourage her to get additional testing. I'd just hate for the little guy to have CF and not be appropriately treated.
 
Top