Scared for my son

[2005CFmom]

I want to ditto everything Alyssa said and add our recent experience with sweat testing.

My husband recently went through CF testing because of some sinus/pulmonary issues that he had been having. His dr did a sweat test first...number came back 18. When he called with the results, he told us the number and immediatly said that this number does not rule out CF and that he had already put in orders for genetic testing.

Apparently, on the sweat test results (we never got a copy, but this is what the dr told us), there was a disclaimer that this test could not be used to rule out CF because people with "negative" results had later tested postive through genetic testing. I don't know what the exact wording was, but that was the idea the disclaimer conveyed.

(BTW, he was shown only to be a carrier on the Ambry complete test.)

But, the point is that sweat tests should never be used to rule out CF. They can be a quick way to diagnose, but should not be relied on to rule out CF.

My suggestion for you right now is to go with your gut feeling. If your doctor has other ideas of what might be causing your sons problems, go ahead and look into those. But, don't let this negative sweat test result cross CF of your list.

Maybe you can get a copy of the sweat test lab work and see if it has any kind of disclaimer. Or just ask your doctor to put in writing that this sweat test result DEFINATELY rules out CF. If he is not willing to do that, then he should order complete genetic testing for your son.

 

[2005CFmom]

I want to ditto everything Alyssa said and add our recent experience with sweat testing.

My husband recently went through CF testing because of some sinus/pulmonary issues that he had been having. His dr did a sweat test first...number came back 18. When he called with the results, he told us the number and immediatly said that this number does not rule out CF and that he had already put in orders for genetic testing.

Apparently, on the sweat test results (we never got a copy, but this is what the dr told us), there was a disclaimer that this test could not be used to rule out CF because people with "negative" results had later tested postive through genetic testing. I don't know what the exact wording was, but that was the idea the disclaimer conveyed.

(BTW, he was shown only to be a carrier on the Ambry complete test.)

But, the point is that sweat tests should never be used to rule out CF. They can be a quick way to diagnose, but should not be relied on to rule out CF.

My suggestion for you right now is to go with your gut feeling. If your doctor has other ideas of what might be causing your sons problems, go ahead and look into those. But, don't let this negative sweat test result cross CF of your list.

Maybe you can get a copy of the sweat test lab work and see if it has any kind of disclaimer. Or just ask your doctor to put in writing that this sweat test result DEFINATELY rules out CF. If he is not willing to do that, then he should order complete genetic testing for your son.

 

[2005CFmom]

I want to ditto everything Alyssa said and add our recent experience with sweat testing.

My husband recently went through CF testing because of some sinus/pulmonary issues that he had been having. His dr did a sweat test first...number came back 18. When he called with the results, he told us the number and immediatly said that this number does not rule out CF and that he had already put in orders for genetic testing.

Apparently, on the sweat test results (we never got a copy, but this is what the dr told us), there was a disclaimer that this test could not be used to rule out CF because people with "negative" results had later tested postive through genetic testing. I don't know what the exact wording was, but that was the idea the disclaimer conveyed.

(BTW, he was shown only to be a carrier on the Ambry complete test.)

But, the point is that sweat tests should never be used to rule out CF. They can be a quick way to diagnose, but should not be relied on to rule out CF.

My suggestion for you right now is to go with your gut feeling. If your doctor has other ideas of what might be causing your sons problems, go ahead and look into those. But, don't let this negative sweat test result cross CF of your list.

Maybe you can get a copy of the sweat test lab work and see if it has any kind of disclaimer. Or just ask your doctor to put in writing that this sweat test result DEFINATELY rules out CF. If he is not willing to do that, then he should order complete genetic testing for your son.

 

[2005CFmom]

I want to ditto everything Alyssa said and add our recent experience with sweat testing.

My husband recently went through CF testing because of some sinus/pulmonary issues that he had been having. His dr did a sweat test first...number came back 18. When he called with the results, he told us the number and immediatly said that this number does not rule out CF and that he had already put in orders for genetic testing.

Apparently, on the sweat test results (we never got a copy, but this is what the dr told us), there was a disclaimer that this test could not be used to rule out CF because people with "negative" results had later tested postive through genetic testing. I don't know what the exact wording was, but that was the idea the disclaimer conveyed.

(BTW, he was shown only to be a carrier on the Ambry complete test.)

But, the point is that sweat tests should never be used to rule out CF. They can be a quick way to diagnose, but should not be relied on to rule out CF.

My suggestion for you right now is to go with your gut feeling. If your doctor has other ideas of what might be causing your sons problems, go ahead and look into those. But, don't let this negative sweat test result cross CF of your list.

Maybe you can get a copy of the sweat test lab work and see if it has any kind of disclaimer. Or just ask your doctor to put in writing that this sweat test result DEFINATELY rules out CF. If he is not willing to do that, then he should order complete genetic testing for your son.

 

[2005CFmom]

I want to ditto everything Alyssa said and add our recent experience with sweat testing.

My husband recently went through CF testing because of some sinus/pulmonary issues that he had been having. His dr did a sweat test first...number came back 18. When he called with the results, he told us the number and immediatly said that this number does not rule out CF and that he had already put in orders for genetic testing.

Apparently, on the sweat test results (we never got a copy, but this is what the dr told us), there was a disclaimer that this test could not be used to rule out CF because people with "negative" results had later tested postive through genetic testing. I don't know what the exact wording was, but that was the idea the disclaimer conveyed.

(BTW, he was shown only to be a carrier on the Ambry complete test.)

But, the point is that sweat tests should never be used to rule out CF. They can be a quick way to diagnose, but should not be relied on to rule out CF.

My suggestion for you right now is to go with your gut feeling. If your doctor has other ideas of what might be causing your sons problems, go ahead and look into those. But, don't let this negative sweat test result cross CF of your list.

Maybe you can get a copy of the sweat test lab work and see if it has any kind of disclaimer. Or just ask your doctor to put in writing that this sweat test result DEFINATELY rules out CF. If he is not willing to do that, then he should order complete genetic testing for your son.

 

[Ratatosk]

DS' sweat test was done at an accreddited CF center and was a normal 32. It was probably so low because he was only a few weeks old. But it didn't come back inconclusive there was a number. But we'd already known DS had CF because genetic blood tests came back a week or two prior showing he had CF.

As far as insurance not covering the testing. DH's cousin got the same response from our clinic when she inquired about carrier testing. In fact the doctor questioned why she'd even want to bother -- huh? Anyway, I contacted a friend of mine whose granddaughter has CF 'cuz I seemed to recall several members of her family opted for genetic testing. Sure enough -- 40 relatives -- aunts, uncles, siblings, children... all got tested and of that group only ONE person's insurance didn't cover the testing, and she found out from her insurance company prior to the testing and opted out because she was a grandparent and had already had children, so it was a moot point. More important that her children be tested.

 

[Ratatosk]

DS' sweat test was done at an accreddited CF center and was a normal 32. It was probably so low because he was only a few weeks old. But it didn't come back inconclusive there was a number. But we'd already known DS had CF because genetic blood tests came back a week or two prior showing he had CF.

As far as insurance not covering the testing. DH's cousin got the same response from our clinic when she inquired about carrier testing. In fact the doctor questioned why she'd even want to bother -- huh? Anyway, I contacted a friend of mine whose granddaughter has CF 'cuz I seemed to recall several members of her family opted for genetic testing. Sure enough -- 40 relatives -- aunts, uncles, siblings, children... all got tested and of that group only ONE person's insurance didn't cover the testing, and she found out from her insurance company prior to the testing and opted out because she was a grandparent and had already had children, so it was a moot point. More important that her children be tested.

 

[Ratatosk]

DS' sweat test was done at an accreddited CF center and was a normal 32. It was probably so low because he was only a few weeks old. But it didn't come back inconclusive there was a number. But we'd already known DS had CF because genetic blood tests came back a week or two prior showing he had CF.

As far as insurance not covering the testing. DH's cousin got the same response from our clinic when she inquired about carrier testing. In fact the doctor questioned why she'd even want to bother -- huh? Anyway, I contacted a friend of mine whose granddaughter has CF 'cuz I seemed to recall several members of her family opted for genetic testing. Sure enough -- 40 relatives -- aunts, uncles, siblings, children... all got tested and of that group only ONE person's insurance didn't cover the testing, and she found out from her insurance company prior to the testing and opted out because she was a grandparent and had already had children, so it was a moot point. More important that her children be tested.

 

[Ratatosk]

DS' sweat test was done at an accreddited CF center and was a normal 32. It was probably so low because he was only a few weeks old. But it didn't come back inconclusive there was a number. But we'd already known DS had CF because genetic blood tests came back a week or two prior showing he had CF.

As far as insurance not covering the testing. DH's cousin got the same response from our clinic when she inquired about carrier testing. In fact the doctor questioned why she'd even want to bother -- huh? Anyway, I contacted a friend of mine whose granddaughter has CF 'cuz I seemed to recall several members of her family opted for genetic testing. Sure enough -- 40 relatives -- aunts, uncles, siblings, children... all got tested and of that group only ONE person's insurance didn't cover the testing, and she found out from her insurance company prior to the testing and opted out because she was a grandparent and had already had children, so it was a moot point. More important that her children be tested.

 

[Ratatosk]

DS' sweat test was done at an accreddited CF center and was a normal 32. It was probably so low because he was only a few weeks old. But it didn't come back inconclusive there was a number. But we'd already known DS had CF because genetic blood tests came back a week or two prior showing he had CF.

As far as insurance not covering the testing. DH's cousin got the same response from our clinic when she inquired about carrier testing. In fact the doctor questioned why she'd even want to bother -- huh? Anyway, I contacted a friend of mine whose granddaughter has CF 'cuz I seemed to recall several members of her family opted for genetic testing. Sure enough -- 40 relatives -- aunts, uncles, siblings, children... all got tested and of that group only ONE person's insurance didn't cover the testing, and she found out from her insurance company prior to the testing and opted out because she was a grandparent and had already had children, so it was a moot point. More important that her children be tested.

 

[jena]

Yes AND there is also concern that you mentioned that the testing was done at a non-accreditted center. It is still possible that your son has CF. Speak with your son's new pediatrician (not his nurse) personally and discuss these concerns. He may be willing to push for the genetic testing. PLEASE do not just "hope" that the results are right. Also, if you want to try enzymes, you could probably get your doctor to write your a prescription for a good enzyme like Creon, or Ultrase, or Pancrease (ask him to write - no generic on the prescription). These really are the best way to go whether he has CF or not!
GOOD LUCK!
Jena

 

[jena]

Yes AND there is also concern that you mentioned that the testing was done at a non-accreditted center. It is still possible that your son has CF. Speak with your son's new pediatrician (not his nurse) personally and discuss these concerns. He may be willing to push for the genetic testing. PLEASE do not just "hope" that the results are right. Also, if you want to try enzymes, you could probably get your doctor to write your a prescription for a good enzyme like Creon, or Ultrase, or Pancrease (ask him to write - no generic on the prescription). These really are the best way to go whether he has CF or not!
GOOD LUCK!
Jena

 

[jena]

Yes AND there is also concern that you mentioned that the testing was done at a non-accreditted center. It is still possible that your son has CF. Speak with your son's new pediatrician (not his nurse) personally and discuss these concerns. He may be willing to push for the genetic testing. PLEASE do not just "hope" that the results are right. Also, if you want to try enzymes, you could probably get your doctor to write your a prescription for a good enzyme like Creon, or Ultrase, or Pancrease (ask him to write - no generic on the prescription). These really are the best way to go whether he has CF or not!
GOOD LUCK!
Jena

 

[jena]

Yes AND there is also concern that you mentioned that the testing was done at a non-accreditted center. It is still possible that your son has CF. Speak with your son's new pediatrician (not his nurse) personally and discuss these concerns. He may be willing to push for the genetic testing. PLEASE do not just "hope" that the results are right. Also, if you want to try enzymes, you could probably get your doctor to write your a prescription for a good enzyme like Creon, or Ultrase, or Pancrease (ask him to write - no generic on the prescription). These really are the best way to go whether he has CF or not!
GOOD LUCK!
Jena

 

[jena]

Yes AND there is also concern that you mentioned that the testing was done at a non-accreditted center. It is still possible that your son has CF. Speak with your son's new pediatrician (not his nurse) personally and discuss these concerns. He may be willing to push for the genetic testing. PLEASE do not just "hope" that the results are right. Also, if you want to try enzymes, you could probably get your doctor to write your a prescription for a good enzyme like Creon, or Ultrase, or Pancrease (ask him to write - no generic on the prescription). These really are the best way to go whether he has CF or not!
GOOD LUCK!
Jena

 

[mlbsmom]

Thanks everyone for your support, I am definately not going to let this go. Mason has been over his most recent cold now for a few days and we already have a light cough back again.
As soon as I get him to the doctor again (going to ask in person as his doctor is near impossible to get on the phone) I am going to try to get him to request the genetic testing. At the very least I'm going to ask to have the sweat test repeated at Riley Childrens Hospital as it is the accredited center in my area.
We are off to the behavioral therapist in a few minutes to have some testing done on some other behavioral issues he is having.
I will keep you all posted and thanks again for helping me, I would have been totally lost about this if not for you gals!

 

[mlbsmom]

Thanks everyone for your support, I am definately not going to let this go. Mason has been over his most recent cold now for a few days and we already have a light cough back again.
As soon as I get him to the doctor again (going to ask in person as his doctor is near impossible to get on the phone) I am going to try to get him to request the genetic testing. At the very least I'm going to ask to have the sweat test repeated at Riley Childrens Hospital as it is the accredited center in my area.
We are off to the behavioral therapist in a few minutes to have some testing done on some other behavioral issues he is having.
I will keep you all posted and thanks again for helping me, I would have been totally lost about this if not for you gals!

 

[mlbsmom]

Thanks everyone for your support, I am definately not going to let this go. Mason has been over his most recent cold now for a few days and we already have a light cough back again.
As soon as I get him to the doctor again (going to ask in person as his doctor is near impossible to get on the phone) I am going to try to get him to request the genetic testing. At the very least I'm going to ask to have the sweat test repeated at Riley Childrens Hospital as it is the accredited center in my area.
We are off to the behavioral therapist in a few minutes to have some testing done on some other behavioral issues he is having.
I will keep you all posted and thanks again for helping me, I would have been totally lost about this if not for you gals!

 

[mlbsmom]

Thanks everyone for your support, I am definately not going to let this go. Mason has been over his most recent cold now for a few days and we already have a light cough back again.
As soon as I get him to the doctor again (going to ask in person as his doctor is near impossible to get on the phone) I am going to try to get him to request the genetic testing. At the very least I'm going to ask to have the sweat test repeated at Riley Childrens Hospital as it is the accredited center in my area.
We are off to the behavioral therapist in a few minutes to have some testing done on some other behavioral issues he is having.
I will keep you all posted and thanks again for helping me, I would have been totally lost about this if not for you gals!

 

[mlbsmom]

Thanks everyone for your support, I am definately not going to let this go. Mason has been over his most recent cold now for a few days and we already have a light cough back again.
As soon as I get him to the doctor again (going to ask in person as his doctor is near impossible to get on the phone) I am going to try to get him to request the genetic testing. At the very least I'm going to ask to have the sweat test repeated at Riley Childrens Hospital as it is the accredited center in my area.
We are off to the behavioral therapist in a few minutes to have some testing done on some other behavioral issues he is having.
I will keep you all posted and thanks again for helping me, I would have been totally lost about this if not for you gals!