IRT levels

tcb121 · Jun 5, 2008

Alyssa,

Thanks so much for the reply. We will probably pursue full testing after the sweat test. The elevated IRT is what triggers further testing here in Maryland. Two years ago they would not have even tested our daughter because her IRT was below 180. Over the last couple years they changed that standard to anything above 90 IRT they do genetic testing for the most common markers of CF. If you have one of the markers like the F508 then they send you on to get the sweat test done. In my research I found a pediatrics document that correlates elevated IRT with single mutation of the F508 gene and provides number of CF cases depending on how high the IRT was. In our case, having an IRT level below 140 puts her at a near 0% ( roughly 2 positives for every 1404 newborns tested in this range ). I would be much more concerned had her IRT levels been 220 and above. Those newborns have a 10% + chance of having CF. Newborns in the 300 + IRT range have a 24% chance of having CF. According to the study it looks like the higher the IRT the higher the dx of CF is. If anything I would like to get this information out to other parents that may be looking for information on what the real % chances are of their child having CF. When we first went to the pediatrician and she told us our daughter was "screen positive" to get further testing for CF and that she had a 1 in 12 chance of having CF I wanted to know more. So I contacted the lab that did our tests and talked with a genetics expert who pointed me to the study that I have linked in my initial post. Having the IRT number was a real relief to us because it showed hard data that our daughter was not in a greater risk category. Knowing that her percentages went from 1 in 12 to 2 in 1404 helps some. Of course we still have plenty of worry, but this information did help calm some of those nerves. Our pediatrician didn't have the IRT value from the lab at our first meeting, but then called us once she got the IRT values and re-affirmed the study findings and said instead of a 1 in 12 chance that her odds were near 0% and that the state was just looking for those 1 in a million cases. Either way the information needs to be on the boards for other parents to look at. I can't tell you how long I looked on the internet to find answers, and having the IRT level chart would have been a great peace of mind from the beginning. If other parents with CF kids could post their newborns IRT value vs dx of CF I think it would also help. We go for sweat testing on the 16th of this month, so I will keep everyone posted.

Thanks.

tcb121 · Jun 5, 2008

Alyssa,

Thanks so much for the reply. We will probably pursue full testing after the sweat test. The elevated IRT is what triggers further testing here in Maryland. Two years ago they would not have even tested our daughter because her IRT was below 180. Over the last couple years they changed that standard to anything above 90 IRT they do genetic testing for the most common markers of CF. If you have one of the markers like the F508 then they send you on to get the sweat test done. In my research I found a pediatrics document that correlates elevated IRT with single mutation of the F508 gene and provides number of CF cases depending on how high the IRT was. In our case, having an IRT level below 140 puts her at a near 0% ( roughly 2 positives for every 1404 newborns tested in this range ). I would be much more concerned had her IRT levels been 220 and above. Those newborns have a 10% + chance of having CF. Newborns in the 300 + IRT range have a 24% chance of having CF. According to the study it looks like the higher the IRT the higher the dx of CF is. If anything I would like to get this information out to other parents that may be looking for information on what the real % chances are of their child having CF. When we first went to the pediatrician and she told us our daughter was "screen positive" to get further testing for CF and that she had a 1 in 12 chance of having CF I wanted to know more. So I contacted the lab that did our tests and talked with a genetics expert who pointed me to the study that I have linked in my initial post. Having the IRT number was a real relief to us because it showed hard data that our daughter was not in a greater risk category. Knowing that her percentages went from 1 in 12 to 2 in 1404 helps some. Of course we still have plenty of worry, but this information did help calm some of those nerves. Our pediatrician didn't have the IRT value from the lab at our first meeting, but then called us once she got the IRT values and re-affirmed the study findings and said instead of a 1 in 12 chance that her odds were near 0% and that the state was just looking for those 1 in a million cases. Either way the information needs to be on the boards for other parents to look at. I can't tell you how long I looked on the internet to find answers, and having the IRT level chart would have been a great peace of mind from the beginning. If other parents with CF kids could post their newborns IRT value vs dx of CF I think it would also help. We go for sweat testing on the 16th of this month, so I will keep everyone posted.

Thanks.

tcb121 · Jun 5, 2008

Alyssa,

Thanks so much for the reply. We will probably pursue full testing after the sweat test. The elevated IRT is what triggers further testing here in Maryland. Two years ago they would not have even tested our daughter because her IRT was below 180. Over the last couple years they changed that standard to anything above 90 IRT they do genetic testing for the most common markers of CF. If you have one of the markers like the F508 then they send you on to get the sweat test done. In my research I found a pediatrics document that correlates elevated IRT with single mutation of the F508 gene and provides number of CF cases depending on how high the IRT was. In our case, having an IRT level below 140 puts her at a near 0% ( roughly 2 positives for every 1404 newborns tested in this range ). I would be much more concerned had her IRT levels been 220 and above. Those newborns have a 10% + chance of having CF. Newborns in the 300 + IRT range have a 24% chance of having CF. According to the study it looks like the higher the IRT the higher the dx of CF is. If anything I would like to get this information out to other parents that may be looking for information on what the real % chances are of their child having CF. When we first went to the pediatrician and she told us our daughter was "screen positive" to get further testing for CF and that she had a 1 in 12 chance of having CF I wanted to know more. So I contacted the lab that did our tests and talked with a genetics expert who pointed me to the study that I have linked in my initial post. Having the IRT number was a real relief to us because it showed hard data that our daughter was not in a greater risk category. Knowing that her percentages went from 1 in 12 to 2 in 1404 helps some. Of course we still have plenty of worry, but this information did help calm some of those nerves. Our pediatrician didn't have the IRT value from the lab at our first meeting, but then called us once she got the IRT values and re-affirmed the study findings and said instead of a 1 in 12 chance that her odds were near 0% and that the state was just looking for those 1 in a million cases. Either way the information needs to be on the boards for other parents to look at. I can't tell you how long I looked on the internet to find answers, and having the IRT level chart would have been a great peace of mind from the beginning. If other parents with CF kids could post their newborns IRT value vs dx of CF I think it would also help. We go for sweat testing on the 16th of this month, so I will keep everyone posted.

Thanks.

tcb121 · Jun 5, 2008

Alyssa,

Thanks so much for the reply. We will probably pursue full testing after the sweat test. The elevated IRT is what triggers further testing here in Maryland. Two years ago they would not have even tested our daughter because her IRT was below 180. Over the last couple years they changed that standard to anything above 90 IRT they do genetic testing for the most common markers of CF. If you have one of the markers like the F508 then they send you on to get the sweat test done. In my research I found a pediatrics document that correlates elevated IRT with single mutation of the F508 gene and provides number of CF cases depending on how high the IRT was. In our case, having an IRT level below 140 puts her at a near 0% ( roughly 2 positives for every 1404 newborns tested in this range ). I would be much more concerned had her IRT levels been 220 and above. Those newborns have a 10% + chance of having CF. Newborns in the 300 + IRT range have a 24% chance of having CF. According to the study it looks like the higher the IRT the higher the dx of CF is. If anything I would like to get this information out to other parents that may be looking for information on what the real % chances are of their child having CF. When we first went to the pediatrician and she told us our daughter was "screen positive" to get further testing for CF and that she had a 1 in 12 chance of having CF I wanted to know more. So I contacted the lab that did our tests and talked with a genetics expert who pointed me to the study that I have linked in my initial post. Having the IRT number was a real relief to us because it showed hard data that our daughter was not in a greater risk category. Knowing that her percentages went from 1 in 12 to 2 in 1404 helps some. Of course we still have plenty of worry, but this information did help calm some of those nerves. Our pediatrician didn't have the IRT value from the lab at our first meeting, but then called us once she got the IRT values and re-affirmed the study findings and said instead of a 1 in 12 chance that her odds were near 0% and that the state was just looking for those 1 in a million cases. Either way the information needs to be on the boards for other parents to look at. I can't tell you how long I looked on the internet to find answers, and having the IRT level chart would have been a great peace of mind from the beginning. If other parents with CF kids could post their newborns IRT value vs dx of CF I think it would also help. We go for sweat testing on the 16th of this month, so I will keep everyone posted.

Thanks.

tcb121 · Jun 5, 2008

Alyssa,
 
 Thanks so much for the reply. We will probably pursue full testing after the sweat test. The elevated IRT is what triggers further testing here in Maryland. Two years ago they would not have even tested our daughter because her IRT was below 180. Over the last couple years they changed that standard to anything above 90 IRT they do genetic testing for the most common markers of CF. If you have one of the markers like the F508 then they send you on to get the sweat test done. In my research I found a pediatrics document that correlates elevated IRT with single mutation of the F508 gene and provides number of CF cases depending on how high the IRT was. In our case, having an IRT level below 140 puts her at a near 0% ( roughly 2 positives for every 1404 newborns tested in this range ). I would be much more concerned had her IRT levels been 220 and above. Those newborns have a 10% + chance of having CF. Newborns in the 300 + IRT range have a 24% chance of having CF. According to the study it looks like the higher the IRT the higher the dx of CF is. If anything I would like to get this information out to other parents that may be looking for information on what the real % chances are of their child having CF. When we first went to the pediatrician and she told us our daughter was "screen positive" to get further testing for CF and that she had a 1 in 12 chance of having CF I wanted to know more. So I contacted the lab that did our tests and talked with a genetics expert who pointed me to the study that I have linked in my initial post. Having the IRT number was a real relief to us because it showed hard data that our daughter was not in a greater risk category. Knowing that her percentages went from 1 in 12 to 2 in 1404 helps some. Of course we still have plenty of worry, but this information did help calm some of those nerves. Our pediatrician didn't have the IRT value from the lab at our first meeting, but then called us once she got the IRT values and re-affirmed the study findings and said instead of a 1 in 12 chance that her odds were near 0% and that the state was just looking for those 1 in a million cases. Either way the information needs to be on the boards for other parents to look at. I can't tell you how long I looked on the internet to find answers, and having the IRT level chart would have been a great peace of mind from the beginning. If other parents with CF kids could post their newborns IRT value vs dx of CF I think it would also help. We go for sweat testing on the 16th of this month, so I will keep everyone posted.
 
 Thanks.

pypersmom · Jun 5, 2008

Hi TCB121-

Thanks for sharing your story. Please check your private messages, it is located on the left side of the page. I have similiar story to yours.

Thanks

pypersmom · Jun 5, 2008

Hi TCB121-

Thanks for sharing your story. Please check your private messages, it is located on the left side of the page. I have similiar story to yours.

Thanks

pypersmom · Jun 5, 2008

Hi TCB121-

Thanks for sharing your story. Please check your private messages, it is located on the left side of the page. I have similiar story to yours.

Thanks

pypersmom · Jun 5, 2008

Hi TCB121-

Thanks for sharing your story. Please check your private messages, it is located on the left side of the page. I have similiar story to yours.

Thanks

pypersmom · Jun 5, 2008

Hi TCB121-
 
 Thanks for sharing your story. Please check your private messages, it is located on the left side of the page. I have similiar story to yours.
 
 Thanks

zoeg · Jun 6, 2008

I'm not sure what my daughter's IRT level was, but I remember getting the call from the pediatrician that her IRT level was elevated and that she had the delta F508 on her newborn screen. They wanted her to do a sweat test as well. Well, that came back negative. She too, was at her birth weight at 2 weeks. Now is where things changed...After two weeks she did start to have failure to thrive. At about 2 months they did another sweat test that was positive. Apparently, sweat tests don't always work when they are very little. Ambry testing showed another mutation but a rare one that newborn screening wouldn't pick up. Good luck to you guys and keep us posted.

Zoe, mom to KatewCF and Ava

zoeg · Jun 6, 2008

I'm not sure what my daughter's IRT level was, but I remember getting the call from the pediatrician that her IRT level was elevated and that she had the delta F508 on her newborn screen. They wanted her to do a sweat test as well. Well, that came back negative. She too, was at her birth weight at 2 weeks. Now is where things changed...After two weeks she did start to have failure to thrive. At about 2 months they did another sweat test that was positive. Apparently, sweat tests don't always work when they are very little. Ambry testing showed another mutation but a rare one that newborn screening wouldn't pick up. Good luck to you guys and keep us posted.

Zoe, mom to KatewCF and Ava

zoeg · Jun 6, 2008

I'm not sure what my daughter's IRT level was, but I remember getting the call from the pediatrician that her IRT level was elevated and that she had the delta F508 on her newborn screen. They wanted her to do a sweat test as well. Well, that came back negative. She too, was at her birth weight at 2 weeks. Now is where things changed...After two weeks she did start to have failure to thrive. At about 2 months they did another sweat test that was positive. Apparently, sweat tests don't always work when they are very little. Ambry testing showed another mutation but a rare one that newborn screening wouldn't pick up. Good luck to you guys and keep us posted.

Zoe, mom to KatewCF and Ava

zoeg · Jun 6, 2008

I'm not sure what my daughter's IRT level was, but I remember getting the call from the pediatrician that her IRT level was elevated and that she had the delta F508 on her newborn screen. They wanted her to do a sweat test as well. Well, that came back negative. She too, was at her birth weight at 2 weeks. Now is where things changed...After two weeks she did start to have failure to thrive. At about 2 months they did another sweat test that was positive. Apparently, sweat tests don't always work when they are very little. Ambry testing showed another mutation but a rare one that newborn screening wouldn't pick up. Good luck to you guys and keep us posted.

Zoe, mom to KatewCF and Ava

zoeg · Jun 6, 2008

I'm not sure what my daughter's IRT level was, but I remember getting the call from the pediatrician that her IRT level was elevated and that she had the delta F508 on her newborn screen. They wanted her to do a sweat test as well. Well, that came back negative. She too, was at her birth weight at 2 weeks. Now is where things changed...After two weeks she did start to have failure to thrive. At about 2 months they did another sweat test that was positive. Apparently, sweat tests don't always work when they are very little. Ambry testing showed another mutation but a rare one that newborn screening wouldn't pick up. Good luck to you guys and keep us posted.
 
 Zoe, mom to KatewCF and Ava

mjflowergirl · Jun 20, 2008

Great research! Aiden had no other symptoms when he was that little. Remember, CF is a PROGRESSIVE disease. He had normal poos (as normal as newborn poos could be), and was born in the 70-80th percentile for weight. He was almost 9 lbs! We only had the alert from the IRT level to signal our ped. His first test was in the 120's. I don't remember the exact number. 2 weeks later, he showed 280 something. And then, our sweat test was 102 at 3 weeks of age (obviously a positive diagnosis). It takes time for newborn blood to normalize. This is actually what our ped told us when the test came back abnormal the first time. That the chance of having a diagnosis of CF was so incredibly rare and we shouldn't even be concerned about it with the high incidence of false-positives in newborn screening.

I am not trying to scare you, please understand that, I'm just being honest. I did forget to mention, though, that Aiden DID taste like salt. I would lick my lips, kiss his forehead, and then lick my lips again. This works better if the child has not JUST had a bath- as that would wash all of the sweat away. Try it right after she gets up from a long nap.

Crossing my fingers and sending prayers your way!

Misty

mjflowergirl · Jun 20, 2008

Great research! Aiden had no other symptoms when he was that little. Remember, CF is a PROGRESSIVE disease. He had normal poos (as normal as newborn poos could be), and was born in the 70-80th percentile for weight. He was almost 9 lbs! We only had the alert from the IRT level to signal our ped. His first test was in the 120's. I don't remember the exact number. 2 weeks later, he showed 280 something. And then, our sweat test was 102 at 3 weeks of age (obviously a positive diagnosis). It takes time for newborn blood to normalize. This is actually what our ped told us when the test came back abnormal the first time. That the chance of having a diagnosis of CF was so incredibly rare and we shouldn't even be concerned about it with the high incidence of false-positives in newborn screening.

I am not trying to scare you, please understand that, I'm just being honest. I did forget to mention, though, that Aiden DID taste like salt. I would lick my lips, kiss his forehead, and then lick my lips again. This works better if the child has not JUST had a bath- as that would wash all of the sweat away. Try it right after she gets up from a long nap.

Crossing my fingers and sending prayers your way!

Misty

mjflowergirl · Jun 20, 2008

Great research! Aiden had no other symptoms when he was that little. Remember, CF is a PROGRESSIVE disease. He had normal poos (as normal as newborn poos could be), and was born in the 70-80th percentile for weight. He was almost 9 lbs! We only had the alert from the IRT level to signal our ped. His first test was in the 120's. I don't remember the exact number. 2 weeks later, he showed 280 something. And then, our sweat test was 102 at 3 weeks of age (obviously a positive diagnosis). It takes time for newborn blood to normalize. This is actually what our ped told us when the test came back abnormal the first time. That the chance of having a diagnosis of CF was so incredibly rare and we shouldn't even be concerned about it with the high incidence of false-positives in newborn screening.

I am not trying to scare you, please understand that, I'm just being honest. I did forget to mention, though, that Aiden DID taste like salt. I would lick my lips, kiss his forehead, and then lick my lips again. This works better if the child has not JUST had a bath- as that would wash all of the sweat away. Try it right after she gets up from a long nap.

Crossing my fingers and sending prayers your way!

Misty

mjflowergirl · Jun 20, 2008

Great research! Aiden had no other symptoms when he was that little. Remember, CF is a PROGRESSIVE disease. He had normal poos (as normal as newborn poos could be), and was born in the 70-80th percentile for weight. He was almost 9 lbs! We only had the alert from the IRT level to signal our ped. His first test was in the 120's. I don't remember the exact number. 2 weeks later, he showed 280 something. And then, our sweat test was 102 at 3 weeks of age (obviously a positive diagnosis). It takes time for newborn blood to normalize. This is actually what our ped told us when the test came back abnormal the first time. That the chance of having a diagnosis of CF was so incredibly rare and we shouldn't even be concerned about it with the high incidence of false-positives in newborn screening.

I am not trying to scare you, please understand that, I'm just being honest. I did forget to mention, though, that Aiden DID taste like salt. I would lick my lips, kiss his forehead, and then lick my lips again. This works better if the child has not JUST had a bath- as that would wash all of the sweat away. Try it right after she gets up from a long nap.

Crossing my fingers and sending prayers your way!

Misty

mjflowergirl · Jun 20, 2008

Great research! Aiden had no other symptoms when he was that little. Remember, CF is a PROGRESSIVE disease. He had normal poos (as normal as newborn poos could be), and was born in the 70-80th percentile for weight. He was almost 9 lbs! We only had the alert from the IRT level to signal our ped. His first test was in the 120's. I don't remember the exact number. 2 weeks later, he showed 280 something. And then, our sweat test was 102 at 3 weeks of age (obviously a positive diagnosis). It takes time for newborn blood to normalize. This is actually what our ped told us when the test came back abnormal the first time. That the chance of having a diagnosis of CF was so incredibly rare and we shouldn't even be concerned about it with the high incidence of false-positives in newborn screening.
 
 I am not trying to scare you, please understand that, I'm just being honest. I did forget to mention, though, that Aiden DID taste like salt. I would lick my lips, kiss his forehead, and then lick my lips again. This works better if the child has not JUST had a bath- as that would wash all of the sweat away. Try it right after she gets up from a long nap.
 
 Crossing my fingers and sending prayers your way!
 
 Misty

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