It's not cf

H

hhhhhmom

New member
Hi,

I just called the cf clinic and whatever my son has isn't cf--his sweat test was 16. As relieved as I am, I'm also a little disappointed that ANOTHER hopeful diagnosis has come and gone. With each new negative test, they are testing for worse and worse diseases. Not that I thought cf was anything good to have but you can (at least) treat a disease when you know what it is.

Thank you everyone for answering my questions. I wish only the best for you and your children.
 
H

hhhhhmom

New member
Hi,

I just called the cf clinic and whatever my son has isn't cf--his sweat test was 16. As relieved as I am, I'm also a little disappointed that ANOTHER hopeful diagnosis has come and gone. With each new negative test, they are testing for worse and worse diseases. Not that I thought cf was anything good to have but you can (at least) treat a disease when you know what it is.

Thank you everyone for answering my questions. I wish only the best for you and your children.
 
J

julie

New member
Laura, there a about 5 people on this CF board who have had repeated negative sweat tests and finally had a genetic test (some were diagnosed on a limited panel CF test, some on an extended one) and low and behold, THEY HAVE CF!!!

I can't recall if your son had a genetic test yet? If he did and it was the limited one 25-89 mutations, I would honestly suggest that you look into having this extended panel test on your son. Something isn't right, and it sounds more like CF than anything else. Of course, I am no doctor but we've heard numerous situations just like yours and many of them DO get diagnosed as having CF. Hopefully some of those who have been diagnosed by blood after passing numerious sweat tests will come give you their story.

Don't give up hope, and were still here to help out. Best of luck in finding the answer!
 
J

julie

New member
Laura, there a about 5 people on this CF board who have had repeated negative sweat tests and finally had a genetic test (some were diagnosed on a limited panel CF test, some on an extended one) and low and behold, THEY HAVE CF!!!

I can't recall if your son had a genetic test yet? If he did and it was the limited one 25-89 mutations, I would honestly suggest that you look into having this extended panel test on your son. Something isn't right, and it sounds more like CF than anything else. Of course, I am no doctor but we've heard numerous situations just like yours and many of them DO get diagnosed as having CF. Hopefully some of those who have been diagnosed by blood after passing numerious sweat tests will come give you their story.

Don't give up hope, and were still here to help out. Best of luck in finding the answer!
 
You must log in or register to reply here.
Top