CF testing after birth

[MamatoAlexa]

DH had carrier testing done before we started TTC. They tested for the top 80 mutations - negative.
I live in NY and CF is included in the newborn screening but I am not sure exactly what they test for. <img src="i/expressions/face-icon-small-blush.gif" border="0">
They tried to sweat test Alexa while in the NICU but she would not sweat enough. Once she was a little older we took her back for another sweat test. Her sweat test came back super low which I know can mean nothing but it was enough for me to feel comfortable not getting full Ambry sequencing.
Aside from the NY State newborn screening, Hannah has not had any other testing.

 

[MamatoAlexa]

DH had carrier testing done before we started TTC. They tested for the top 80 mutations - negative.
I live in NY and CF is included in the newborn screening but I am not sure exactly what they test for. <img src="i/expressions/face-icon-small-blush.gif" border="0">
They tried to sweat test Alexa while in the NICU but she would not sweat enough. Once she was a little older we took her back for another sweat test. Her sweat test came back super low which I know can mean nothing but it was enough for me to feel comfortable not getting full Ambry sequencing.
Aside from the NY State newborn screening, Hannah has not had any other testing.

 

[MamatoAlexa]

DH had carrier testing done before we started TTC. They tested for the top 80 mutations - negative.
I live in NY and CF is included in the newborn screening but I am not sure exactly what they test for. <img src="i/expressions/face-icon-small-blush.gif" border="0">
They tried to sweat test Alexa while in the NICU but she would not sweat enough. Once she was a little older we took her back for another sweat test. Her sweat test came back super low which I know can mean nothing but it was enough for me to feel comfortable not getting full Ambry sequencing.
Aside from the NY State newborn screening, Hannah has not had any other testing.

 

[MamatoAlexa]

DH had carrier testing done before we started TTC. They tested for the top 80 mutations - negative.
I live in NY and CF is included in the newborn screening but I am not sure exactly what they test for. <img src="i/expressions/face-icon-small-blush.gif" border="0">
They tried to sweat test Alexa while in the NICU but she would not sweat enough. Once she was a little older we took her back for another sweat test. Her sweat test came back super low which I know can mean nothing but it was enough for me to feel comfortable not getting full Ambry sequencing.
Aside from the NY State newborn screening, Hannah has not had any other testing.

 

[MamatoAlexa]

DH had carrier testing done before we started TTC. They tested for the top 80 mutations - negative.
<br />I live in NY and CF is included in the newborn screening but I am not sure exactly what they test for. <img src="i/expressions/face-icon-small-blush.gif" border="0">
<br />They tried to sweat test Alexa while in the NICU but she would not sweat enough. Once she was a little older we took her back for another sweat test. Her sweat test came back super low which I know can mean nothing but it was enough for me to feel comfortable not getting full Ambry sequencing.
<br />Aside from the NY State newborn screening, Hannah has not had any other testing.

 

[rubyroselee]

Yes, that's it Caroline, "trypsinogen"!! I guess I won't worry about it then because it's a very low chance the baby will have CF. We'll just be on the lookout for symptoms. I did not realize the Ambry test was so expensive. Thank you all for your responses!

 

[rubyroselee]

Yes, that's it Caroline, "trypsinogen"!! I guess I won't worry about it then because it's a very low chance the baby will have CF. We'll just be on the lookout for symptoms. I did not realize the Ambry test was so expensive. Thank you all for your responses!

 

[rubyroselee]

Yes, that's it Caroline, "trypsinogen"!! I guess I won't worry about it then because it's a very low chance the baby will have CF. We'll just be on the lookout for symptoms. I did not realize the Ambry test was so expensive. Thank you all for your responses!

 

[rubyroselee]

Yes, that's it Caroline, "trypsinogen"!! I guess I won't worry about it then because it's a very low chance the baby will have CF. We'll just be on the lookout for symptoms. I did not realize the Ambry test was so expensive. Thank you all for your responses!

 

[rubyroselee]

Yes, that's it Caroline, "trypsinogen"!! I guess I won't worry about it then because it's a very low chance the baby will have CF. We'll just be on the lookout for symptoms. I did not realize the Ambry test was so expensive. Thank you all for your responses!

 

[LouLou]

With DH being negative for 89 mutations. We still had a 1 in 500 chance of making a cf baby. So I guess your odds are about the same. I'm sure you'll have better luck though! Isaac passed the newborn screening test (trypsinogen). By the way, there's no exact number that is a cut off point at least in PA. All newborns that test in the top 10% are recommended for sweat test. Isaac passed the sweat test with a score of 12 which was required by the cf center before they'd do genetic. They actually did both in one day upon me insisting.

For us, we wanted to know everything modern science could tell us about possible cf in Isaac. Waiting until symptoms arise is allowing damage to be done in our opinion. I wouldn't worry about it now. You have very little chance of there being cf but I'd get the testing once he's born. Insurance should cover it. Just have a cf center order it. On the other hand if you do find out he has a-typical cf (likely what it would be) and you and spouse aren't going to do any preventative care then maybe it's better just to wait until he's got symptoms. Just remember in the case of having a LO with cf even just taking them for clinic visits and not doing a thing at home is considered preventative care. IMO it doesn't take much work to pitch up at clinic 4 times a year. We do pt because it is suggested because it can't hurt. Anyway if you ever want to chat about it just let me know.

But definitely don't worry about it now. Enjoy your pregnancy and I would suggest waiting at least 6 weeks before taking him for the sweat test and genetic test because you might not feeling like doing much extra. I took Isaac at 10 weeks. He had no problem sweating. Of course, I would have taken him sooner if he'd shown signs of cf.

 

[LouLou]

With DH being negative for 89 mutations. We still had a 1 in 500 chance of making a cf baby. So I guess your odds are about the same. I'm sure you'll have better luck though! Isaac passed the newborn screening test (trypsinogen). By the way, there's no exact number that is a cut off point at least in PA. All newborns that test in the top 10% are recommended for sweat test. Isaac passed the sweat test with a score of 12 which was required by the cf center before they'd do genetic. They actually did both in one day upon me insisting.

For us, we wanted to know everything modern science could tell us about possible cf in Isaac. Waiting until symptoms arise is allowing damage to be done in our opinion. I wouldn't worry about it now. You have very little chance of there being cf but I'd get the testing once he's born. Insurance should cover it. Just have a cf center order it. On the other hand if you do find out he has a-typical cf (likely what it would be) and you and spouse aren't going to do any preventative care then maybe it's better just to wait until he's got symptoms. Just remember in the case of having a LO with cf even just taking them for clinic visits and not doing a thing at home is considered preventative care. IMO it doesn't take much work to pitch up at clinic 4 times a year. We do pt because it is suggested because it can't hurt. Anyway if you ever want to chat about it just let me know.

But definitely don't worry about it now. Enjoy your pregnancy and I would suggest waiting at least 6 weeks before taking him for the sweat test and genetic test because you might not feeling like doing much extra. I took Isaac at 10 weeks. He had no problem sweating. Of course, I would have taken him sooner if he'd shown signs of cf.

 

[LouLou]

With DH being negative for 89 mutations. We still had a 1 in 500 chance of making a cf baby. So I guess your odds are about the same. I'm sure you'll have better luck though! Isaac passed the newborn screening test (trypsinogen). By the way, there's no exact number that is a cut off point at least in PA. All newborns that test in the top 10% are recommended for sweat test. Isaac passed the sweat test with a score of 12 which was required by the cf center before they'd do genetic. They actually did both in one day upon me insisting.

For us, we wanted to know everything modern science could tell us about possible cf in Isaac. Waiting until symptoms arise is allowing damage to be done in our opinion. I wouldn't worry about it now. You have very little chance of there being cf but I'd get the testing once he's born. Insurance should cover it. Just have a cf center order it. On the other hand if you do find out he has a-typical cf (likely what it would be) and you and spouse aren't going to do any preventative care then maybe it's better just to wait until he's got symptoms. Just remember in the case of having a LO with cf even just taking them for clinic visits and not doing a thing at home is considered preventative care. IMO it doesn't take much work to pitch up at clinic 4 times a year. We do pt because it is suggested because it can't hurt. Anyway if you ever want to chat about it just let me know.

But definitely don't worry about it now. Enjoy your pregnancy and I would suggest waiting at least 6 weeks before taking him for the sweat test and genetic test because you might not feeling like doing much extra. I took Isaac at 10 weeks. He had no problem sweating. Of course, I would have taken him sooner if he'd shown signs of cf.

 

[LouLou]

With DH being negative for 89 mutations. We still had a 1 in 500 chance of making a cf baby. So I guess your odds are about the same. I'm sure you'll have better luck though! Isaac passed the newborn screening test (trypsinogen). By the way, there's no exact number that is a cut off point at least in PA. All newborns that test in the top 10% are recommended for sweat test. Isaac passed the sweat test with a score of 12 which was required by the cf center before they'd do genetic. They actually did both in one day upon me insisting.

For us, we wanted to know everything modern science could tell us about possible cf in Isaac. Waiting until symptoms arise is allowing damage to be done in our opinion. I wouldn't worry about it now. You have very little chance of there being cf but I'd get the testing once he's born. Insurance should cover it. Just have a cf center order it. On the other hand if you do find out he has a-typical cf (likely what it would be) and you and spouse aren't going to do any preventative care then maybe it's better just to wait until he's got symptoms. Just remember in the case of having a LO with cf even just taking them for clinic visits and not doing a thing at home is considered preventative care. IMO it doesn't take much work to pitch up at clinic 4 times a year. We do pt because it is suggested because it can't hurt. Anyway if you ever want to chat about it just let me know.

But definitely don't worry about it now. Enjoy your pregnancy and I would suggest waiting at least 6 weeks before taking him for the sweat test and genetic test because you might not feeling like doing much extra. I took Isaac at 10 weeks. He had no problem sweating. Of course, I would have taken him sooner if he'd shown signs of cf.

 

[LouLou]

With DH being negative for 89 mutations. We still had a 1 in 500 chance of making a cf baby. So I guess your odds are about the same. I'm sure you'll have better luck though! Isaac passed the newborn screening test (trypsinogen). By the way, there's no exact number that is a cut off point at least in PA. All newborns that test in the top 10% are recommended for sweat test. Isaac passed the sweat test with a score of 12 which was required by the cf center before they'd do genetic. They actually did both in one day upon me insisting.
<br />
<br />For us, we wanted to know everything modern science could tell us about possible cf in Isaac. Waiting until symptoms arise is allowing damage to be done in our opinion. I wouldn't worry about it now. You have very little chance of there being cf but I'd get the testing once he's born. Insurance should cover it. Just have a cf center order it. On the other hand if you do find out he has a-typical cf (likely what it would be) and you and spouse aren't going to do any preventative care then maybe it's better just to wait until he's got symptoms. Just remember in the case of having a LO with cf even just taking them for clinic visits and not doing a thing at home is considered preventative care. IMO it doesn't take much work to pitch up at clinic 4 times a year. We do pt because it is suggested because it can't hurt. Anyway if you ever want to chat about it just let me know.
<br />
<br />But definitely don't worry about it now. Enjoy your pregnancy and I would suggest waiting at least 6 weeks before taking him for the sweat test and genetic test because you might not feeling like doing much extra. I took Isaac at 10 weeks. He had no problem sweating. Of course, I would have taken him sooner if he'd shown signs of cf.

 

[hopesiris]

We knew what mutations to test for when Amelia was born (we had missed testing for one of them in the prenatal test because we didn't know I have CF). I was under the impression that insurance wouldn't cover the testing if it wasn't diagnostic. Amelia had a negative newborn screen and her Ambry came back showing she is only a carrier, but surprisingly our insurance covered the $300 Ambry test anyway. I'm guessing that because we knew she carried one mutation already, the chances of CF were very high so they covered it. It wouldn't hurt for you to ask Ambry to check into it with your insurance carrier though. You never know.
We used her cord blood to run the test, I kept an Ambry sample collection kit and forms in my hospital bag. My ob/gyn collected the blood and signed off on the forms, and DH shipped the kit to Ambry.
FYI, when I had my Ambry testing last year I had to have the full panel done and it cost $3K. The results took 3 weeks.

 

[hopesiris]

We knew what mutations to test for when Amelia was born (we had missed testing for one of them in the prenatal test because we didn't know I have CF). I was under the impression that insurance wouldn't cover the testing if it wasn't diagnostic. Amelia had a negative newborn screen and her Ambry came back showing she is only a carrier, but surprisingly our insurance covered the $300 Ambry test anyway. I'm guessing that because we knew she carried one mutation already, the chances of CF were very high so they covered it. It wouldn't hurt for you to ask Ambry to check into it with your insurance carrier though. You never know.
We used her cord blood to run the test, I kept an Ambry sample collection kit and forms in my hospital bag. My ob/gyn collected the blood and signed off on the forms, and DH shipped the kit to Ambry.
FYI, when I had my Ambry testing last year I had to have the full panel done and it cost $3K. The results took 3 weeks.

 

[hopesiris]

We knew what mutations to test for when Amelia was born (we had missed testing for one of them in the prenatal test because we didn't know I have CF). I was under the impression that insurance wouldn't cover the testing if it wasn't diagnostic. Amelia had a negative newborn screen and her Ambry came back showing she is only a carrier, but surprisingly our insurance covered the $300 Ambry test anyway. I'm guessing that because we knew she carried one mutation already, the chances of CF were very high so they covered it. It wouldn't hurt for you to ask Ambry to check into it with your insurance carrier though. You never know.
We used her cord blood to run the test, I kept an Ambry sample collection kit and forms in my hospital bag. My ob/gyn collected the blood and signed off on the forms, and DH shipped the kit to Ambry.
FYI, when I had my Ambry testing last year I had to have the full panel done and it cost $3K. The results took 3 weeks.

 

[hopesiris]

We knew what mutations to test for when Amelia was born (we had missed testing for one of them in the prenatal test because we didn't know I have CF). I was under the impression that insurance wouldn't cover the testing if it wasn't diagnostic. Amelia had a negative newborn screen and her Ambry came back showing she is only a carrier, but surprisingly our insurance covered the $300 Ambry test anyway. I'm guessing that because we knew she carried one mutation already, the chances of CF were very high so they covered it. It wouldn't hurt for you to ask Ambry to check into it with your insurance carrier though. You never know.
We used her cord blood to run the test, I kept an Ambry sample collection kit and forms in my hospital bag. My ob/gyn collected the blood and signed off on the forms, and DH shipped the kit to Ambry.
FYI, when I had my Ambry testing last year I had to have the full panel done and it cost $3K. The results took 3 weeks.

 

[hopesiris]

We knew what mutations to test for when Amelia was born (we had missed testing for one of them in the prenatal test because we didn't know I have CF). I was under the impression that insurance wouldn't cover the testing if it wasn't diagnostic. Amelia had a negative newborn screen and her Ambry came back showing she is only a carrier, but surprisingly our insurance covered the $300 Ambry test anyway. I'm guessing that because we knew she carried one mutation already, the chances of CF were very high so they covered it. It wouldn't hurt for you to ask Ambry to check into it with your insurance carrier though. You never know.
<br />We used her cord blood to run the test, I kept an Ambry sample collection kit and forms in my hospital bag. My ob/gyn collected the blood and signed off on the forms, and DH shipped the kit to Ambry.
<br />FYI, when I had my Ambry testing last year I had to have the full panel done and it cost $3K. The results took 3 weeks.