How often is it a false positive?

M

Mommy2Zeke

Guest
Sorry... In our state (Oklahoma) they do a genetic test on the NB screening. We knew he was DDf508 at 2 weeks old when the second one came back. I didn't know about the IRT testing- so yeah... I can definitely see how there could be a false positive with that.
 
M

Mommy2Zeke

Guest
Sorry... In our state (Oklahoma) they do a genetic test on the NB screening. We knew he was DDf508 at 2 weeks old when the second one came back. I didn't know about the IRT testing- so yeah... I can definitely see how there could be a false positive with that.
 
M

Mommy2Zeke

Guest
Sorry... In our state (Oklahoma) they do a genetic test on the NB screening. We knew he was DDf508 at 2 weeks old when the second one came back. I didn't know about the IRT testing- so yeah... I can definitely see how there could be a false positive with that.
 
M

Mommy2Zeke

Guest
Sorry... In our state (Oklahoma) they do a genetic test on the NB screening. We knew he was DDf508 at 2 weeks old when the second one came back. I didn't know about the IRT testing- so yeah... I can definitely see how there could be a false positive with that.
 
M

Mommy2Zeke

Guest
Sorry... In our state (Oklahoma) they do a genetic test on the NB screening. We knew he was DDf508 at 2 weeks old when the second one came back. I didn't know about the IRT testing- so yeah... I can definitely see how there could be a false positive with that.
 
H

hmw

New member
It would be so much easier if there was a universal method of doing the newborn screen for cf! In many cases I think it comes down to expense; the IRT is much less expensive (only adds about $1 to the cost of the nbs.) Some states to IRT/IRT, others do IRT/panel test, at least one I've heard of does IRT/df508, and still others do a panel test right off as part of the first tier of the nbs. So it's important to know exactly how your state does the screening. And none of the screening is 'diagnostic' unless someone has a panel test and comes back with 2 mutations. Otherwise, it's just a tool that has to be taken into context with other factors- symptoms, sweat test, more comprehensive genetic testing.
 
H

hmw

New member
It would be so much easier if there was a universal method of doing the newborn screen for cf! In many cases I think it comes down to expense; the IRT is much less expensive (only adds about $1 to the cost of the nbs.) Some states to IRT/IRT, others do IRT/panel test, at least one I've heard of does IRT/df508, and still others do a panel test right off as part of the first tier of the nbs. So it's important to know exactly how your state does the screening. And none of the screening is 'diagnostic' unless someone has a panel test and comes back with 2 mutations. Otherwise, it's just a tool that has to be taken into context with other factors- symptoms, sweat test, more comprehensive genetic testing.
 
H

hmw

New member
It would be so much easier if there was a universal method of doing the newborn screen for cf! In many cases I think it comes down to expense; the IRT is much less expensive (only adds about $1 to the cost of the nbs.) Some states to IRT/IRT, others do IRT/panel test, at least one I've heard of does IRT/df508, and still others do a panel test right off as part of the first tier of the nbs. So it's important to know exactly how your state does the screening. And none of the screening is 'diagnostic' unless someone has a panel test and comes back with 2 mutations. Otherwise, it's just a tool that has to be taken into context with other factors- symptoms, sweat test, more comprehensive genetic testing.
 
H

hmw

New member
It would be so much easier if there was a universal method of doing the newborn screen for cf! In many cases I think it comes down to expense; the IRT is much less expensive (only adds about $1 to the cost of the nbs.) Some states to IRT/IRT, others do IRT/panel test, at least one I've heard of does IRT/df508, and still others do a panel test right off as part of the first tier of the nbs. So it's important to know exactly how your state does the screening. And none of the screening is 'diagnostic' unless someone has a panel test and comes back with 2 mutations. Otherwise, it's just a tool that has to be taken into context with other factors- symptoms, sweat test, more comprehensive genetic testing.
 
H

hmw

New member
It would be so much easier if there was a universal method of doing the newborn screen for cf! In many cases I think it comes down to expense; the IRT is much less expensive (only adds about $1 to the cost of the nbs.) Some states to IRT/IRT, others do IRT/panel test, at least one I've heard of does IRT/df508, and still others do a panel test right off as part of the first tier of the nbs. So it's important to know exactly how your state does the screening. And none of the screening is 'diagnostic' unless someone has a panel test and comes back with 2 mutations. Otherwise, it's just a tool that has to be taken into context with other factors- symptoms, sweat test, more comprehensive genetic testing.
 
P

petnurse

New member
Thanks guys...It makes much more sense to do the IRT then a genetic screen if the IRT is elevated. When I asked that, they looked at me like I was crazy! Oh well. So we wait.....
 
P

petnurse

New member
Thanks guys...It makes much more sense to do the IRT then a genetic screen if the IRT is elevated. When I asked that, they looked at me like I was crazy! Oh well. So we wait.....
 
P

petnurse

New member
Thanks guys...It makes much more sense to do the IRT then a genetic screen if the IRT is elevated. When I asked that, they looked at me like I was crazy! Oh well. So we wait.....
 
P

petnurse

New member
Thanks guys...It makes much more sense to do the IRT then a genetic screen if the IRT is elevated. When I asked that, they looked at me like I was crazy! Oh well. So we wait.....
 
P

petnurse

New member
Thanks guys...It makes much more sense to do the IRT then a genetic screen if the IRT is elevated. When I asked that, they looked at me like I was crazy! Oh well. So we wait.....
 
R

Ratatosk

Administrator
Staff member
We were told at the very beginning the people wcf are born with normal lungs; however, with extra thick mucus, infections, time that will change as CF is a progressive disease.

While DS DID come home from the NICU with a bug and developed bronchitis. He was probably the healthiest babies in his daycare. The director would warn us about what was going around and it pretty much missed him. He had a couple ear and sinus infections the first year or so. Cultured pseudo and H. Flu -- but didn't have a cough or a wheeze, nose didn't run... Other than his bronchitis at 3 months, he didn't cough or get sick with a cough until he was about 4.

I agree the testing issues are confusing. DS had a normal sweat test and a couple of his initial blood tests were inconclusive due to there not being a large enough sample. So we had one test showing double delta f508 and a normal sweat test, which did make us wonder in the back of our minds that maybe it was all just a big mistake. While we continued to do treatments and adminster meds, we kept thinking that maybe someday someone would tell us it was all just a big mistake. A lab error...

He was pretty much on enzymes from day one and he never had oily, greasy, bulky stools. Just weird colors. And DH had some relatives who early on had digestive issues as children and later recovered, so again -- we thought maybe, just maybe... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
We were told at the very beginning the people wcf are born with normal lungs; however, with extra thick mucus, infections, time that will change as CF is a progressive disease.

While DS DID come home from the NICU with a bug and developed bronchitis. He was probably the healthiest babies in his daycare. The director would warn us about what was going around and it pretty much missed him. He had a couple ear and sinus infections the first year or so. Cultured pseudo and H. Flu -- but didn't have a cough or a wheeze, nose didn't run... Other than his bronchitis at 3 months, he didn't cough or get sick with a cough until he was about 4.

I agree the testing issues are confusing. DS had a normal sweat test and a couple of his initial blood tests were inconclusive due to there not being a large enough sample. So we had one test showing double delta f508 and a normal sweat test, which did make us wonder in the back of our minds that maybe it was all just a big mistake. While we continued to do treatments and adminster meds, we kept thinking that maybe someday someone would tell us it was all just a big mistake. A lab error...

He was pretty much on enzymes from day one and he never had oily, greasy, bulky stools. Just weird colors. And DH had some relatives who early on had digestive issues as children and later recovered, so again -- we thought maybe, just maybe... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
We were told at the very beginning the people wcf are born with normal lungs; however, with extra thick mucus, infections, time that will change as CF is a progressive disease.

While DS DID come home from the NICU with a bug and developed bronchitis. He was probably the healthiest babies in his daycare. The director would warn us about what was going around and it pretty much missed him. He had a couple ear and sinus infections the first year or so. Cultured pseudo and H. Flu -- but didn't have a cough or a wheeze, nose didn't run... Other than his bronchitis at 3 months, he didn't cough or get sick with a cough until he was about 4.

I agree the testing issues are confusing. DS had a normal sweat test and a couple of his initial blood tests were inconclusive due to there not being a large enough sample. So we had one test showing double delta f508 and a normal sweat test, which did make us wonder in the back of our minds that maybe it was all just a big mistake. While we continued to do treatments and adminster meds, we kept thinking that maybe someday someone would tell us it was all just a big mistake. A lab error...

He was pretty much on enzymes from day one and he never had oily, greasy, bulky stools. Just weird colors. And DH had some relatives who early on had digestive issues as children and later recovered, so again -- we thought maybe, just maybe... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
We were told at the very beginning the people wcf are born with normal lungs; however, with extra thick mucus, infections, time that will change as CF is a progressive disease.

While DS DID come home from the NICU with a bug and developed bronchitis. He was probably the healthiest babies in his daycare. The director would warn us about what was going around and it pretty much missed him. He had a couple ear and sinus infections the first year or so. Cultured pseudo and H. Flu -- but didn't have a cough or a wheeze, nose didn't run... Other than his bronchitis at 3 months, he didn't cough or get sick with a cough until he was about 4.

I agree the testing issues are confusing. DS had a normal sweat test and a couple of his initial blood tests were inconclusive due to there not being a large enough sample. So we had one test showing double delta f508 and a normal sweat test, which did make us wonder in the back of our minds that maybe it was all just a big mistake. While we continued to do treatments and adminster meds, we kept thinking that maybe someday someone would tell us it was all just a big mistake. A lab error...

He was pretty much on enzymes from day one and he never had oily, greasy, bulky stools. Just weird colors. And DH had some relatives who early on had digestive issues as children and later recovered, so again -- we thought maybe, just maybe... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
We were told at the very beginning the people wcf are born with normal lungs; however, with extra thick mucus, infections, time that will change as CF is a progressive disease.
<br />
<br />While DS DID come home from the NICU with a bug and developed bronchitis. He was probably the healthiest babies in his daycare. The director would warn us about what was going around and it pretty much missed him. He had a couple ear and sinus infections the first year or so. Cultured pseudo and H. Flu -- but didn't have a cough or a wheeze, nose didn't run... Other than his bronchitis at 3 months, he didn't cough or get sick with a cough until he was about 4.
<br />
<br />I agree the testing issues are confusing. DS had a normal sweat test and a couple of his initial blood tests were inconclusive due to there not being a large enough sample. So we had one test showing double delta f508 and a normal sweat test, which did make us wonder in the back of our minds that maybe it was all just a big mistake. While we continued to do treatments and adminster meds, we kept thinking that maybe someday someone would tell us it was all just a big mistake. A lab error...
<br />
<br />He was pretty much on enzymes from day one and he never had oily, greasy, bulky stools. Just weird colors. And DH had some relatives who early on had digestive issues as children and later recovered, so again -- we thought maybe, just maybe... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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