Not sure what to do??

H

hmw

New member
Well, not all 50 states. CT doesn't universally screen (as we have found out the hard way, sigh), neither does Texas (although it's required to do so there). PA and NC are due to implement universal screening programs later this yr. Fortunately, the rest do screen... many of them having just started in the last couple yrs.

I hope you get answers for your son soon. Given his sweat test results and the symptoms he's had I think the genetic test would be warranted. I hope the dr got some good information after speaking to the dr. from the CF clinic.
 
H

hmw

New member
Well, not all 50 states. CT doesn't universally screen (as we have found out the hard way, sigh), neither does Texas (although it's required to do so there). PA and NC are due to implement universal screening programs later this yr. Fortunately, the rest do screen... many of them having just started in the last couple yrs.

I hope you get answers for your son soon. Given his sweat test results and the symptoms he's had I think the genetic test would be warranted. I hope the dr got some good information after speaking to the dr. from the CF clinic.
 
H

hmw

New member
Well, not all 50 states. CT doesn't universally screen (as we have found out the hard way, sigh), neither does Texas (although it's required to do so there). PA and NC are due to implement universal screening programs later this yr. Fortunately, the rest do screen... many of them having just started in the last couple yrs.

I hope you get answers for your son soon. Given his sweat test results and the symptoms he's had I think the genetic test would be warranted. I hope the dr got some good information after speaking to the dr. from the CF clinic.
 
H

hmw

New member
Well, not all 50 states. CT doesn't universally screen (as we have found out the hard way, sigh), neither does Texas (although it's required to do so there). PA and NC are due to implement universal screening programs later this yr. Fortunately, the rest do screen... many of them having just started in the last couple yrs.

I hope you get answers for your son soon. Given his sweat test results and the symptoms he's had I think the genetic test would be warranted. I hope the dr got some good information after speaking to the dr. from the CF clinic.
 
H

hmw

New member
Well, not all 50 states. CT doesn't universally screen (as we have found out the hard way, sigh), neither does Texas (although it's required to do so there). PA and NC are due to implement universal screening programs later this yr. Fortunately, the rest do screen... many of them having just started in the last couple yrs.
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<br />I hope you get answers for your son soon. Given his sweat test results and the symptoms he's had I think the genetic test would be warranted. I hope the dr got some good information after speaking to the dr. from the CF clinic.
 
R

reagansmom

New member
Texas has approved the newborn screening...just not the funding. Unfortunately Reagan fell through that loophole.

By 7 months of pregnancy they should have done a carrier test on you already, I'd ask your OB. Even then though, it's not testing for all the mutations. We learned that the hard way as my husbands carrier test was neg. The best thing would be to go straight to the Ambry Genetic test.
 
R

reagansmom

New member
Texas has approved the newborn screening...just not the funding. Unfortunately Reagan fell through that loophole.

By 7 months of pregnancy they should have done a carrier test on you already, I'd ask your OB. Even then though, it's not testing for all the mutations. We learned that the hard way as my husbands carrier test was neg. The best thing would be to go straight to the Ambry Genetic test.
 
R

reagansmom

New member
Texas has approved the newborn screening...just not the funding. Unfortunately Reagan fell through that loophole.

By 7 months of pregnancy they should have done a carrier test on you already, I'd ask your OB. Even then though, it's not testing for all the mutations. We learned that the hard way as my husbands carrier test was neg. The best thing would be to go straight to the Ambry Genetic test.
 
R

reagansmom

New member
Texas has approved the newborn screening...just not the funding. Unfortunately Reagan fell through that loophole.

By 7 months of pregnancy they should have done a carrier test on you already, I'd ask your OB. Even then though, it's not testing for all the mutations. We learned that the hard way as my husbands carrier test was neg. The best thing would be to go straight to the Ambry Genetic test.
 
R

reagansmom

New member
Texas has approved the newborn screening...just not the funding. Unfortunately Reagan fell through that loophole.
<br />
<br />By 7 months of pregnancy they should have done a carrier test on you already, I'd ask your OB. Even then though, it's not testing for all the mutations. We learned that the hard way as my husbands carrier test was neg. The best thing would be to go straight to the Ambry Genetic test.
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<br />
 
S

Skye

New member
Just as an added note on here. CF is so very specialized that not many docs outside of the CF clinics understand much about the disease...how to test properly for it, how to treat it, how to be pro-active about it. So just know that when you are getting advice from an ENT, GP, or pediatrician....they know very little about the disease. Go with your valuable mother instincts and search further until you are satisfied with the answers. There will even be doctors who may feel confident about what they may know about CF....they don't. Unless they are part of a CF care center, their knowledge is VERY limited. Good for you for being pro-active and asking for further testing.
 
S

Skye

New member
Just as an added note on here. CF is so very specialized that not many docs outside of the CF clinics understand much about the disease...how to test properly for it, how to treat it, how to be pro-active about it. So just know that when you are getting advice from an ENT, GP, or pediatrician....they know very little about the disease. Go with your valuable mother instincts and search further until you are satisfied with the answers. There will even be doctors who may feel confident about what they may know about CF....they don't. Unless they are part of a CF care center, their knowledge is VERY limited. Good for you for being pro-active and asking for further testing.
 
S

Skye

New member
Just as an added note on here. CF is so very specialized that not many docs outside of the CF clinics understand much about the disease...how to test properly for it, how to treat it, how to be pro-active about it. So just know that when you are getting advice from an ENT, GP, or pediatrician....they know very little about the disease. Go with your valuable mother instincts and search further until you are satisfied with the answers. There will even be doctors who may feel confident about what they may know about CF....they don't. Unless they are part of a CF care center, their knowledge is VERY limited. Good for you for being pro-active and asking for further testing.
 
S

Skye

New member
Just as an added note on here. CF is so very specialized that not many docs outside of the CF clinics understand much about the disease...how to test properly for it, how to treat it, how to be pro-active about it. So just know that when you are getting advice from an ENT, GP, or pediatrician....they know very little about the disease. Go with your valuable mother instincts and search further until you are satisfied with the answers. There will even be doctors who may feel confident about what they may know about CF....they don't. Unless they are part of a CF care center, their knowledge is VERY limited. Good for you for being pro-active and asking for further testing.
 
S

Skye

New member
Just as an added note on here. CF is so very specialized that not many docs outside of the CF clinics understand much about the disease...how to test properly for it, how to treat it, how to be pro-active about it. So just know that when you are getting advice from an ENT, GP, or pediatrician....they know very little about the disease. Go with your valuable mother instincts and search further until you are satisfied with the answers. There will even be doctors who may feel confident about what they may know about CF....they don't. Unless they are part of a CF care center, their knowledge is VERY limited. Good for you for being pro-active and asking for further testing.
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