Going crazy

[momofcash]

We have been told that our son has CF, then we were told there was a 90% chance he was just a carrier and his mutation was G542X, then he has a sweat test come back borderline, now we are waiting for the full genetic sequence to come back. It has been 2 weeks and I still have another 2 to 4 weeks to wait for the results. I don't want to be too hopeful because I cannot be devastated again. Then I feel guilty for not thinking positively. There has been so much confusion. Is this a common path of diagnosis? Is there usually so much misinformation? I just don't know how to wait. It already seems like months have gone by since the test was taken.

 

[momofcash]

We have been told that our son has CF, then we were told there was a 90% chance he was just a carrier and his mutation was G542X, then he has a sweat test come back borderline, now we are waiting for the full genetic sequence to come back. It has been 2 weeks and I still have another 2 to 4 weeks to wait for the results. I don't want to be too hopeful because I cannot be devastated again. Then I feel guilty for not thinking positively. There has been so much confusion. Is this a common path of diagnosis? Is there usually so much misinformation? I just don't know how to wait. It already seems like months have gone by since the test was taken.

 

[momofcash]

We have been told that our son has CF, then we were told there was a 90% chance he was just a carrier and his mutation was G542X, then he has a sweat test come back borderline, now we are waiting for the full genetic sequence to come back. It has been 2 weeks and I still have another 2 to 4 weeks to wait for the results. I don't want to be too hopeful because I cannot be devastated again. Then I feel guilty for not thinking positively. There has been so much confusion. Is this a common path of diagnosis? Is there usually so much misinformation? I just don't know how to wait. It already seems like months have gone by since the test was taken.

 

[ktsmom]

Oh, the waiting. We only had to wait 4 days for a follow-up sweat test to confirm the prior positive one, but that was probably the lowest time of my life.

The hope you CAN have is that if it is CF, treatment options will help your child feel better now and have a long, happy life.

There IS a lot of misinformation. I'm sure you've read others on here that have gone through a similar agonizing journey. I don't know what to tell you except hang in there. Please let us know how it all turns out.

 

[ktsmom]

Oh, the waiting. We only had to wait 4 days for a follow-up sweat test to confirm the prior positive one, but that was probably the lowest time of my life.

The hope you CAN have is that if it is CF, treatment options will help your child feel better now and have a long, happy life.

There IS a lot of misinformation. I'm sure you've read others on here that have gone through a similar agonizing journey. I don't know what to tell you except hang in there. Please let us know how it all turns out.

 

[ktsmom]

Oh, the waiting. We only had to wait 4 days for a follow-up sweat test to confirm the prior positive one, but that was probably the lowest time of my life.

The hope you CAN have is that if it is CF, treatment options will help your child feel better now and have a long, happy life.

There IS a lot of misinformation. I'm sure you've read others on here that have gone through a similar agonizing journey. I don't know what to tell you except hang in there. Please let us know how it all turns out.

 

[NoExcuses]

Since CF is such a rare disease, yes there is a ton of misinformation.

And this is why I'm so against sweat testing - it gives such mixed results. Full panel genetic tests should be done 1st thing, all the time.

There is no common path to diagnosis since GP's, the medical world's non-experts on everything, are typically tasked with diagnosis.

It's no fun - i feel for ya.

 

[NoExcuses]

Since CF is such a rare disease, yes there is a ton of misinformation.

And this is why I'm so against sweat testing - it gives such mixed results. Full panel genetic tests should be done 1st thing, all the time.

There is no common path to diagnosis since GP's, the medical world's non-experts on everything, are typically tasked with diagnosis.

It's no fun - i feel for ya.

 

[NoExcuses]

Since CF is such a rare disease, yes there is a ton of misinformation.

And this is why I'm so against sweat testing - it gives such mixed results. Full panel genetic tests should be done 1st thing, all the time.

There is no common path to diagnosis since GP's, the medical world's non-experts on everything, are typically tasked with diagnosis.

It's no fun - i feel for ya.