SIBLING TESTING?

2005CFmom · Feb 19, 2008

Our DR (CF Dr.) automatically tested our other daughter upon CF diagnosis. We did all the test and blood work up on Sarah and the Dr. told us to bring our other daughter with us to the next CF appointment and they would draw blood to run the genetics test on her. So bascially it was within 2 or 3 visits to the CF clinic that we had a sibling genetic test.

edited to add:

BTW Emma had no symptoms that concerned us. Our doctor presented it to us that ALL siblings should be tested. Just to be safe to rule in out now, and they will have information of carrier status for when they are thinking of having children.

2005CFmom · Feb 19, 2008

Our DR (CF Dr.) automatically tested our other daughter upon CF diagnosis. We did all the test and blood work up on Sarah and the Dr. told us to bring our other daughter with us to the next CF appointment and they would draw blood to run the genetics test on her. So bascially it was within 2 or 3 visits to the CF clinic that we had a sibling genetic test.

edited to add:

BTW Emma had no symptoms that concerned us. Our doctor presented it to us that ALL siblings should be tested. Just to be safe to rule in out now, and they will have information of carrier status for when they are thinking of having children.

2005CFmom · Feb 19, 2008

Our DR (CF Dr.) automatically tested our other daughter upon CF diagnosis. We did all the test and blood work up on Sarah and the Dr. told us to bring our other daughter with us to the next CF appointment and they would draw blood to run the genetics test on her. So bascially it was within 2 or 3 visits to the CF clinic that we had a sibling genetic test.

edited to add:

BTW Emma had no symptoms that concerned us. Our doctor presented it to us that ALL siblings should be tested. Just to be safe to rule in out now, and they will have information of carrier status for when they are thinking of having children.

2005CFmom · Feb 19, 2008

Our DR (CF Dr.) automatically tested our other daughter upon CF diagnosis. We did all the test and blood work up on Sarah and the Dr. told us to bring our other daughter with us to the next CF appointment and they would draw blood to run the genetics test on her. So bascially it was within 2 or 3 visits to the CF clinic that we had a sibling genetic test.

edited to add:

BTW Emma had no symptoms that concerned us. Our doctor presented it to us that ALL siblings should be tested. Just to be safe to rule in out now, and they will have information of carrier status for when they are thinking of having children.

2005CFmom · Feb 19, 2008

Our DR (CF Dr.) automatically tested our other daughter upon CF diagnosis. We did all the test and blood work up on Sarah and the Dr. told us to bring our other daughter with us to the next CF appointment and they would draw blood to run the genetics test on her. So bascially it was within 2 or 3 visits to the CF clinic that we had a sibling genetic test.

edited to add:

BTW Emma had no symptoms that concerned us. Our doctor presented it to us that ALL siblings should be tested. Just to be safe to rule in out now, and they will have information of carrier status for when they are thinking of having children.

Mommafirst · Feb 19, 2008

Our doctor did it automatically. Once Alyssa had a diagnosis and two genes known, they tested me. When it was clear I had just one of those genes (and thus my DH had the other), they tested my two boys for those two genes. We didn't have to tell them what the symptoms were, yada yada yada -- since my husband's gene was found by a 33 yo man who was having infertility problems, we didn't want the boys to have to wait that long to know. Luckily my other two (one with allergies, the other with problems gaining weight) were just carriers.

Your doctor shouldn't make a fuss about it. If they do push back --- its not that big of a deal. Our insurance covered it no problem as well. Its not as expensive since they are dealing with two known mutations.

Good luck -- I hope all your other kids are clear of CF.

Mommafirst · Feb 19, 2008

Our doctor did it automatically. Once Alyssa had a diagnosis and two genes known, they tested me. When it was clear I had just one of those genes (and thus my DH had the other), they tested my two boys for those two genes. We didn't have to tell them what the symptoms were, yada yada yada -- since my husband's gene was found by a 33 yo man who was having infertility problems, we didn't want the boys to have to wait that long to know. Luckily my other two (one with allergies, the other with problems gaining weight) were just carriers.

Your doctor shouldn't make a fuss about it. If they do push back --- its not that big of a deal. Our insurance covered it no problem as well. Its not as expensive since they are dealing with two known mutations.

Good luck -- I hope all your other kids are clear of CF.

Mommafirst · Feb 19, 2008

Our doctor did it automatically. Once Alyssa had a diagnosis and two genes known, they tested me. When it was clear I had just one of those genes (and thus my DH had the other), they tested my two boys for those two genes. We didn't have to tell them what the symptoms were, yada yada yada -- since my husband's gene was found by a 33 yo man who was having infertility problems, we didn't want the boys to have to wait that long to know. Luckily my other two (one with allergies, the other with problems gaining weight) were just carriers.

Your doctor shouldn't make a fuss about it. If they do push back --- its not that big of a deal. Our insurance covered it no problem as well. Its not as expensive since they are dealing with two known mutations.

Good luck -- I hope all your other kids are clear of CF.

Mommafirst · Feb 19, 2008

Our doctor did it automatically. Once Alyssa had a diagnosis and two genes known, they tested me. When it was clear I had just one of those genes (and thus my DH had the other), they tested my two boys for those two genes. We didn't have to tell them what the symptoms were, yada yada yada -- since my husband's gene was found by a 33 yo man who was having infertility problems, we didn't want the boys to have to wait that long to know. Luckily my other two (one with allergies, the other with problems gaining weight) were just carriers.

Your doctor shouldn't make a fuss about it. If they do push back --- its not that big of a deal. Our insurance covered it no problem as well. Its not as expensive since they are dealing with two known mutations.

Good luck -- I hope all your other kids are clear of CF.

Mommafirst · Feb 19, 2008

Our doctor did it automatically. Once Alyssa had a diagnosis and two genes known, they tested me. When it was clear I had just one of those genes (and thus my DH had the other), they tested my two boys for those two genes. We didn't have to tell them what the symptoms were, yada yada yada -- since my husband's gene was found by a 33 yo man who was having infertility problems, we didn't want the boys to have to wait that long to know. Luckily my other two (one with allergies, the other with problems gaining weight) were just carriers.

Your doctor shouldn't make a fuss about it. If they do push back --- its not that big of a deal. Our insurance covered it no problem as well. Its not as expensive since they are dealing with two known mutations.

Good luck -- I hope all your other kids are clear of CF.

AnnaH · Feb 19, 2008

All my siblings were tested. My brother passed his sweat test but they found two mutations, and now at 17 is showing symtoms. My sister had a borderline sweat test but no mutations found(full panel). I also had another brother with cf- he and I have "classic" CF- diagnosed because of MI.

I think relatives should be tested. Even if they don't have symptoms, it can be good to know that you're a carrier.

Once you know what two genes you have, you can just test the siblings for those. Much cheaper.

AnnaH · Feb 19, 2008

All my siblings were tested. My brother passed his sweat test but they found two mutations, and now at 17 is showing symtoms. My sister had a borderline sweat test but no mutations found(full panel). I also had another brother with cf- he and I have "classic" CF- diagnosed because of MI.

I think relatives should be tested. Even if they don't have symptoms, it can be good to know that you're a carrier.

Once you know what two genes you have, you can just test the siblings for those. Much cheaper.

AnnaH · Feb 19, 2008

All my siblings were tested. My brother passed his sweat test but they found two mutations, and now at 17 is showing symtoms. My sister had a borderline sweat test but no mutations found(full panel). I also had another brother with cf- he and I have "classic" CF- diagnosed because of MI.

I think relatives should be tested. Even if they don't have symptoms, it can be good to know that you're a carrier.

Once you know what two genes you have, you can just test the siblings for those. Much cheaper.

AnnaH · Feb 19, 2008

All my siblings were tested. My brother passed his sweat test but they found two mutations, and now at 17 is showing symtoms. My sister had a borderline sweat test but no mutations found(full panel). I also had another brother with cf- he and I have "classic" CF- diagnosed because of MI.

I think relatives should be tested. Even if they don't have symptoms, it can be good to know that you're a carrier.

Once you know what two genes you have, you can just test the siblings for those. Much cheaper.

AnnaH · Feb 19, 2008

All my siblings were tested. My brother passed his sweat test but they found two mutations, and now at 17 is showing symtoms. My sister had a borderline sweat test but no mutations found(full panel). I also had another brother with cf- he and I have "classic" CF- diagnosed because of MI.

I think relatives should be tested. Even if they don't have symptoms, it can be good to know that you're a carrier.

Once you know what two genes you have, you can just test the siblings for those. Much cheaper.

Alyssa · Feb 19, 2008

After our daughter was diagnosed we had our son genetically tested too. At the time he was 18 years old with no symptoms -- symptoms and/or lack there of played no part in the testing.... the doctor ordered the test based on his sisters genetic results. There was no problem with insurance.

FYI, about a year later we did a sweat test on him just for curiosity sake -- it was 41. His sisters is 38 (which is why she was misdiagnosed for so long)

Genetic testing is the only way to fly