Sweat Test

[Hannah4025]

My 7 week old daughter's newborn screening came back positive for CF. They then sent us to our local hospital to have a sweat test done; however, they were not able to do it so they did a genzyme gentetics screening and it took 2 week for that to come in. It also came back positive. They are now sending us to a Care Center to have the sweat test done again.

Can anybody tell me why we still have to have a sweat test done when two blood test have came back positive? I am just afraid this is delaying us getting her the medicine and answers we need.

Thanks for your advice!

 

[Hannah4025]

My 7 week old daughter's newborn screening came back positive for CF. They then sent us to our local hospital to have a sweat test done; however, they were not able to do it so they did a genzyme gentetics screening and it took 2 week for that to come in. It also came back positive. They are now sending us to a Care Center to have the sweat test done again.

Can anybody tell me why we still have to have a sweat test done when two blood test have came back positive? I am just afraid this is delaying us getting her the medicine and answers we need.

Thanks for your advice!

 

[Hannah4025]

My 7 week old daughter's newborn screening came back positive for CF. They then sent us to our local hospital to have a sweat test done; however, they were not able to do it so they did a genzyme gentetics screening and it took 2 week for that to come in. It also came back positive. They are now sending us to a Care Center to have the sweat test done again.
<br />
<br />Can anybody tell me why we still have to have a sweat test done when two blood test have came back positive? I am just afraid this is delaying us getting her the medicine and answers we need.
<br />
<br />Thanks for your advice!

 

[NancyLKF]

I think they just want to see the results - since that was once the only way to diagnosis CF. They still like to do it as a confirmation of the diagnosis. But I think you are right, if you have the genetic results than treatments should begin.

 

[NancyLKF]

I think they just want to see the results - since that was once the only way to diagnosis CF. They still like to do it as a confirmation of the diagnosis. But I think you are right, if you have the genetic results than treatments should begin.

 

[NancyLKF]

I think they just want to see the results - since that was once the only way to diagnosis CF. They still like to do it as a confirmation of the diagnosis. But I think you are right, if you have the genetic results than treatments should begin.

 

[Georgiatwins]

Hannah4025 - They're doing the same thing with my twin daughters. They were diagnosed by DNA test at 6 weeks old with CF and they still did a sweat test, which at the time, they were too young and didn't sweat, soooooo, they will have another test done on Dec. 1st and they'll be almost 5 months old.

 

[Georgiatwins]

Hannah4025 - They're doing the same thing with my twin daughters. They were diagnosed by DNA test at 6 weeks old with CF and they still did a sweat test, which at the time, they were too young and didn't sweat, soooooo, they will have another test done on Dec. 1st and they'll be almost 5 months old.

 

[Georgiatwins]

Hannah4025 - They're doing the same thing with my twin daughters. They were diagnosed by DNA test at 6 weeks old with CF and they still did a sweat test, which at the time, they were too young and didn't sweat, soooooo, they will have another test done on Dec. 1st and they'll be almost 5 months old.

 

[BecV]

Hannah, my daughters blood test came back positive for CF at 1 week old, but I still had to do the sweat test. That was done at 6 weeks old and it came back negative at 29. They then took more blood and the results took 3 months to come back....she did have cf even though the sweat test was negative. I did start physio on her upon the initial diagnosis, and she is now almost 8months old. I agree with you about the blood results, but unforunately it takes time to get the official diagnosis. Very frustrating!

 

[BecV]

Hannah, my daughters blood test came back positive for CF at 1 week old, but I still had to do the sweat test. That was done at 6 weeks old and it came back negative at 29. They then took more blood and the results took 3 months to come back....she did have cf even though the sweat test was negative. I did start physio on her upon the initial diagnosis, and she is now almost 8months old. I agree with you about the blood results, but unforunately it takes time to get the official diagnosis. Very frustrating!

 

[BecV]

Hannah, my daughters blood test came back positive for CF at 1 week old, but I still had to do the sweat test. That was done at 6 weeks old and it came back negative at 29. They then took more blood and the results took 3 months to come back....she did have cf even though the sweat test was negative. I did start physio on her upon the initial diagnosis, and she is now almost 8months old. I agree with you about the blood results, but unforunately it takes time to get the official diagnosis. Very frustrating!

 

[Mommafirst]

I think its pretty common to have to wait through all the stages to get the diagnosis. Its VERY frustrating. In the meantime, I'd suggest seeing if you can't pick up a small life insurance plan or a hospital indemnity plan before the diagnosis comes in for certain. Its the thing I wish I'd have done when we were in the limbo stage.

 

[Mommafirst]

I think its pretty common to have to wait through all the stages to get the diagnosis. Its VERY frustrating. In the meantime, I'd suggest seeing if you can't pick up a small life insurance plan or a hospital indemnity plan before the diagnosis comes in for certain. Its the thing I wish I'd have done when we were in the limbo stage.

 

[Mommafirst]

I think its pretty common to have to wait through all the stages to get the diagnosis. Its VERY frustrating. In the meantime, I'd suggest seeing if you can't pick up a small life insurance plan or a hospital indemnity plan before the diagnosis comes in for certain. Its the thing I wish I'd have done when we were in the limbo stage.

 

[hmw]

Sweat tests are not always accurate in young babies (and for that matter, in some people with a confirmed cf dx, may never be positive no matter how many times they are tested.) There is no doubt that your baby has cf, between an elevated newborn screen AND a positive genetic test, and your concern that waiting could delay treatment is justified, especially if the sweat test won't be happening for a while.

Is your baby symptomatic in any way? How is her respiratory health- is there ANY sign of cough or congestion, even slight? How is her weight gain? Any sign of reflux? How are her stools? If she is having concerning symptoms, I would call the CF center that is going to be administering the sweat test and tell them you KNOW she has CF, that there are things going on that are bothering you, and that you don't want to wait any longer for her to be seen. Who is the 'they' that has been sending your dd for all the testing? Her pediatrician's office? If so, the staff at the clinic may not know anything about your daughter yet; it may only be that the lab was contacted to schedule the test. I'd contact the nurse at the CF center and speak to her yourself.

Just as a note... We did not have to wait for everything before getting Emily's dx- when her sweat test came back positive (since that was what was ordered first), she had her dx. The blood test came afterward. We did not have to go through everyyyyything before starting her on the care she needed.

 

[hmw]

Sweat tests are not always accurate in young babies (and for that matter, in some people with a confirmed cf dx, may never be positive no matter how many times they are tested.) There is no doubt that your baby has cf, between an elevated newborn screen AND a positive genetic test, and your concern that waiting could delay treatment is justified, especially if the sweat test won't be happening for a while.

Is your baby symptomatic in any way? How is her respiratory health- is there ANY sign of cough or congestion, even slight? How is her weight gain? Any sign of reflux? How are her stools? If she is having concerning symptoms, I would call the CF center that is going to be administering the sweat test and tell them you KNOW she has CF, that there are things going on that are bothering you, and that you don't want to wait any longer for her to be seen. Who is the 'they' that has been sending your dd for all the testing? Her pediatrician's office? If so, the staff at the clinic may not know anything about your daughter yet; it may only be that the lab was contacted to schedule the test. I'd contact the nurse at the CF center and speak to her yourself.

Just as a note... We did not have to wait for everything before getting Emily's dx- when her sweat test came back positive (since that was what was ordered first), she had her dx. The blood test came afterward. We did not have to go through everyyyyything before starting her on the care she needed.

 

[hmw]

Sweat tests are not always accurate in young babies (and for that matter, in some people with a confirmed cf dx, may never be positive no matter how many times they are tested.) There is no doubt that your baby has cf, between an elevated newborn screen AND a positive genetic test, and your concern that waiting could delay treatment is justified, especially if the sweat test won't be happening for a while.
<br />
<br />Is your baby symptomatic in any way? How is her respiratory health- is there ANY sign of cough or congestion, even slight? How is her weight gain? Any sign of reflux? How are her stools? If she is having concerning symptoms, I would call the CF center that is going to be administering the sweat test and tell them you KNOW she has CF, that there are things going on that are bothering you, and that you don't want to wait any longer for her to be seen. Who is the 'they' that has been sending your dd for all the testing? Her pediatrician's office? If so, the staff at the clinic may not know anything about your daughter yet; it may only be that the lab was contacted to schedule the test. I'd contact the nurse at the CF center and speak to her yourself.
<br />
<br />Just as a note... We did not have to wait for everything before getting Emily's dx- when her sweat test came back positive (since that was what was ordered first), she had her dx. The blood test came afterward. We did not have to go through everyyyyything before starting her on the care she needed.

 

[AleksandraKaczynska]

We also did not have to wait for the genetic test to come back - to start treatment as Joanna sweat test was possitive.
However - in Europe - sweat test is more important - and is the basic for dx. The genetic test and number of mutations of the gene are so many and the number is still growing. Many mutations turn out acctually not to be cf and some are only when they pair with certain other.
But if the test was clear on the mutations your daughter has - why postpone her treatment.
I agree that you should call the cf center - and even exaggerate - so they would examine her and apply the needed treatment.

 

[AleksandraKaczynska]

We also did not have to wait for the genetic test to come back - to start treatment as Joanna sweat test was possitive.
However - in Europe - sweat test is more important - and is the basic for dx. The genetic test and number of mutations of the gene are so many and the number is still growing. Many mutations turn out acctually not to be cf and some are only when they pair with certain other.
But if the test was clear on the mutations your daughter has - why postpone her treatment.
I agree that you should call the cf center - and even exaggerate - so they would examine her and apply the needed treatment.