IRT levels

[tcb121]

I realize the push here for "Full Genetic Testing" but our daughter is fine and healthy. She has a negative sweat test and a negative second heel prick test. Wife went for testing last week and we should have her results soon. She did not do "Full Genetic Testing", but just the most common markers test. I will let you know her results when they come in. If she comes back positive I will get tested as well. Folione, you are in a statistical category all by yourself and even though it is "possible" that one of us has a rare mutation the odds are very very low. Just to put things in proper perspective even if we were both carriers of CF genes, no matter which ones they were, that would put our baby at a 1 in 4 chance of having CF. 25% chance is high, but you would have a 75% chance of having a child without CF at all. Thats with both parents being carriers. If you test both parents and only one shows one of the "Common Markers", the numbers go to a near 0% chance of having a CF baby. I realize that that is your reality, but that is a risk I think most people would take. You would have a higher chance of having another genetic disorder like "Down Syndrome" over having CF at that point in the statistics.

I guess my point is every baby has a chance of being born with a genetic problem and knowing risks vs the non-risks can be good and bad. I wanted to post my information for other parents to look at so that when they are told that their newborn was flagged for more testing that they could have a resource to look at IRT levels vs % with CF. I know my initial thought process was to find out the real % chances of our baby having CF. I knew the IRT level and I knew the F508 was the mutation. I then found a study that had done this exact test and was able to apply that data to our case. Instead of having a 25% chance or a 10% chance, I knew based on the data that our baby had a near 0% chance. Turns out that that indeed she is negative and does not have CF. That being said, she could have been the 1 in 800 or 1000 case, but those are odds I felt better about. At what point would the math make us consider not having another baby?? I would say if we were both carriers that would be enough. 25% risk is too much risk going in, but anything less then 5% I think we would be willing to give it a go. To each his own, I'm only posting to give others information. Full genetic testing imo is a money maker for the medical industry. Initial screenings give a accurate enough indicator that the majority of patients would be captured in the data sample. The 1 in a million cases are good cases for full genetic testing and most are done after the dx of a genetic disorder. Still, even if both parents have the testing done you still have a better chance of having a non CF child. So you can spend the money and be told both are carriers and that puts you in a 25% risk category or you can scan for the common markers and take your chances. I would push for full scanning of the baby if she was showing signs or had a borderline sweat test, but her results are fine and there is no need to continue down this road. I appreciate all the input from the folks here who have kids with CF. Some of the families here are those 1 in a million cases and that is why they stress the need for full testing. Common sense will tell you the odds are in your favor even if both parents are carriers. Get full testing done when other means fail. (ie borderline sweat tests, other symptoms etc..) If insurance is willing to pay for full testing and you need the piece of mind by all means go for it. For the masses of us out here who are flagged for false positives full testing is overkill and a money maker for the medical community.

 

[tcb121]

I realize the push here for "Full Genetic Testing" but our daughter is fine and healthy. She has a negative sweat test and a negative second heel prick test. Wife went for testing last week and we should have her results soon. She did not do "Full Genetic Testing", but just the most common markers test. I will let you know her results when they come in. If she comes back positive I will get tested as well. Folione, you are in a statistical category all by yourself and even though it is "possible" that one of us has a rare mutation the odds are very very low. Just to put things in proper perspective even if we were both carriers of CF genes, no matter which ones they were, that would put our baby at a 1 in 4 chance of having CF. 25% chance is high, but you would have a 75% chance of having a child without CF at all. Thats with both parents being carriers. If you test both parents and only one shows one of the "Common Markers", the numbers go to a near 0% chance of having a CF baby. I realize that that is your reality, but that is a risk I think most people would take. You would have a higher chance of having another genetic disorder like "Down Syndrome" over having CF at that point in the statistics.

I guess my point is every baby has a chance of being born with a genetic problem and knowing risks vs the non-risks can be good and bad. I wanted to post my information for other parents to look at so that when they are told that their newborn was flagged for more testing that they could have a resource to look at IRT levels vs % with CF. I know my initial thought process was to find out the real % chances of our baby having CF. I knew the IRT level and I knew the F508 was the mutation. I then found a study that had done this exact test and was able to apply that data to our case. Instead of having a 25% chance or a 10% chance, I knew based on the data that our baby had a near 0% chance. Turns out that that indeed she is negative and does not have CF. That being said, she could have been the 1 in 800 or 1000 case, but those are odds I felt better about. At what point would the math make us consider not having another baby?? I would say if we were both carriers that would be enough. 25% risk is too much risk going in, but anything less then 5% I think we would be willing to give it a go. To each his own, I'm only posting to give others information. Full genetic testing imo is a money maker for the medical industry. Initial screenings give a accurate enough indicator that the majority of patients would be captured in the data sample. The 1 in a million cases are good cases for full genetic testing and most are done after the dx of a genetic disorder. Still, even if both parents have the testing done you still have a better chance of having a non CF child. So you can spend the money and be told both are carriers and that puts you in a 25% risk category or you can scan for the common markers and take your chances. I would push for full scanning of the baby if she was showing signs or had a borderline sweat test, but her results are fine and there is no need to continue down this road. I appreciate all the input from the folks here who have kids with CF. Some of the families here are those 1 in a million cases and that is why they stress the need for full testing. Common sense will tell you the odds are in your favor even if both parents are carriers. Get full testing done when other means fail. (ie borderline sweat tests, other symptoms etc..) If insurance is willing to pay for full testing and you need the piece of mind by all means go for it. For the masses of us out here who are flagged for false positives full testing is overkill and a money maker for the medical community.

 

[tcb121]

I realize the push here for "Full Genetic Testing" but our daughter is fine and healthy. She has a negative sweat test and a negative second heel prick test. Wife went for testing last week and we should have her results soon. She did not do "Full Genetic Testing", but just the most common markers test. I will let you know her results when they come in. If she comes back positive I will get tested as well. Folione, you are in a statistical category all by yourself and even though it is "possible" that one of us has a rare mutation the odds are very very low. Just to put things in proper perspective even if we were both carriers of CF genes, no matter which ones they were, that would put our baby at a 1 in 4 chance of having CF. 25% chance is high, but you would have a 75% chance of having a child without CF at all. Thats with both parents being carriers. If you test both parents and only one shows one of the "Common Markers", the numbers go to a near 0% chance of having a CF baby. I realize that that is your reality, but that is a risk I think most people would take. You would have a higher chance of having another genetic disorder like "Down Syndrome" over having CF at that point in the statistics.

I guess my point is every baby has a chance of being born with a genetic problem and knowing risks vs the non-risks can be good and bad. I wanted to post my information for other parents to look at so that when they are told that their newborn was flagged for more testing that they could have a resource to look at IRT levels vs % with CF. I know my initial thought process was to find out the real % chances of our baby having CF. I knew the IRT level and I knew the F508 was the mutation. I then found a study that had done this exact test and was able to apply that data to our case. Instead of having a 25% chance or a 10% chance, I knew based on the data that our baby had a near 0% chance. Turns out that that indeed she is negative and does not have CF. That being said, she could have been the 1 in 800 or 1000 case, but those are odds I felt better about. At what point would the math make us consider not having another baby?? I would say if we were both carriers that would be enough. 25% risk is too much risk going in, but anything less then 5% I think we would be willing to give it a go. To each his own, I'm only posting to give others information. Full genetic testing imo is a money maker for the medical industry. Initial screenings give a accurate enough indicator that the majority of patients would be captured in the data sample. The 1 in a million cases are good cases for full genetic testing and most are done after the dx of a genetic disorder. Still, even if both parents have the testing done you still have a better chance of having a non CF child. So you can spend the money and be told both are carriers and that puts you in a 25% risk category or you can scan for the common markers and take your chances. I would push for full scanning of the baby if she was showing signs or had a borderline sweat test, but her results are fine and there is no need to continue down this road. I appreciate all the input from the folks here who have kids with CF. Some of the families here are those 1 in a million cases and that is why they stress the need for full testing. Common sense will tell you the odds are in your favor even if both parents are carriers. Get full testing done when other means fail. (ie borderline sweat tests, other symptoms etc..) If insurance is willing to pay for full testing and you need the piece of mind by all means go for it. For the masses of us out here who are flagged for false positives full testing is overkill and a money maker for the medical community.

 

[tcb121]

I realize the push here for "Full Genetic Testing" but our daughter is fine and healthy. She has a negative sweat test and a negative second heel prick test. Wife went for testing last week and we should have her results soon. She did not do "Full Genetic Testing", but just the most common markers test. I will let you know her results when they come in. If she comes back positive I will get tested as well. Folione, you are in a statistical category all by yourself and even though it is "possible" that one of us has a rare mutation the odds are very very low. Just to put things in proper perspective even if we were both carriers of CF genes, no matter which ones they were, that would put our baby at a 1 in 4 chance of having CF. 25% chance is high, but you would have a 75% chance of having a child without CF at all. Thats with both parents being carriers. If you test both parents and only one shows one of the "Common Markers", the numbers go to a near 0% chance of having a CF baby. I realize that that is your reality, but that is a risk I think most people would take. You would have a higher chance of having another genetic disorder like "Down Syndrome" over having CF at that point in the statistics.

I guess my point is every baby has a chance of being born with a genetic problem and knowing risks vs the non-risks can be good and bad. I wanted to post my information for other parents to look at so that when they are told that their newborn was flagged for more testing that they could have a resource to look at IRT levels vs % with CF. I know my initial thought process was to find out the real % chances of our baby having CF. I knew the IRT level and I knew the F508 was the mutation. I then found a study that had done this exact test and was able to apply that data to our case. Instead of having a 25% chance or a 10% chance, I knew based on the data that our baby had a near 0% chance. Turns out that that indeed she is negative and does not have CF. That being said, she could have been the 1 in 800 or 1000 case, but those are odds I felt better about. At what point would the math make us consider not having another baby?? I would say if we were both carriers that would be enough. 25% risk is too much risk going in, but anything less then 5% I think we would be willing to give it a go. To each his own, I'm only posting to give others information. Full genetic testing imo is a money maker for the medical industry. Initial screenings give a accurate enough indicator that the majority of patients would be captured in the data sample. The 1 in a million cases are good cases for full genetic testing and most are done after the dx of a genetic disorder. Still, even if both parents have the testing done you still have a better chance of having a non CF child. So you can spend the money and be told both are carriers and that puts you in a 25% risk category or you can scan for the common markers and take your chances. I would push for full scanning of the baby if she was showing signs or had a borderline sweat test, but her results are fine and there is no need to continue down this road. I appreciate all the input from the folks here who have kids with CF. Some of the families here are those 1 in a million cases and that is why they stress the need for full testing. Common sense will tell you the odds are in your favor even if both parents are carriers. Get full testing done when other means fail. (ie borderline sweat tests, other symptoms etc..) If insurance is willing to pay for full testing and you need the piece of mind by all means go for it. For the masses of us out here who are flagged for false positives full testing is overkill and a money maker for the medical community.

 

[tcb121]

I realize the push here for "Full Genetic Testing" but our daughter is fine and healthy. She has a negative sweat test and a negative second heel prick test. Wife went for testing last week and we should have her results soon. She did not do "Full Genetic Testing", but just the most common markers test. I will let you know her results when they come in. If she comes back positive I will get tested as well. Folione, you are in a statistical category all by yourself and even though it is "possible" that one of us has a rare mutation the odds are very very low. Just to put things in proper perspective even if we were both carriers of CF genes, no matter which ones they were, that would put our baby at a 1 in 4 chance of having CF. 25% chance is high, but you would have a 75% chance of having a child without CF at all. Thats with both parents being carriers. If you test both parents and only one shows one of the "Common Markers", the numbers go to a near 0% chance of having a CF baby. I realize that that is your reality, but that is a risk I think most people would take. You would have a higher chance of having another genetic disorder like "Down Syndrome" over having CF at that point in the statistics.
<br />
<br />I guess my point is every baby has a chance of being born with a genetic problem and knowing risks vs the non-risks can be good and bad. I wanted to post my information for other parents to look at so that when they are told that their newborn was flagged for more testing that they could have a resource to look at IRT levels vs % with CF. I know my initial thought process was to find out the real % chances of our baby having CF. I knew the IRT level and I knew the F508 was the mutation. I then found a study that had done this exact test and was able to apply that data to our case. Instead of having a 25% chance or a 10% chance, I knew based on the data that our baby had a near 0% chance. Turns out that that indeed she is negative and does not have CF. That being said, she could have been the 1 in 800 or 1000 case, but those are odds I felt better about. At what point would the math make us consider not having another baby?? I would say if we were both carriers that would be enough. 25% risk is too much risk going in, but anything less then 5% I think we would be willing to give it a go. To each his own, I'm only posting to give others information. Full genetic testing imo is a money maker for the medical industry. Initial screenings give a accurate enough indicator that the majority of patients would be captured in the data sample. The 1 in a million cases are good cases for full genetic testing and most are done after the dx of a genetic disorder. Still, even if both parents have the testing done you still have a better chance of having a non CF child. So you can spend the money and be told both are carriers and that puts you in a 25% risk category or you can scan for the common markers and take your chances. I would push for full scanning of the baby if she was showing signs or had a borderline sweat test, but her results are fine and there is no need to continue down this road. I appreciate all the input from the folks here who have kids with CF. Some of the families here are those 1 in a million cases and that is why they stress the need for full testing. Common sense will tell you the odds are in your favor even if both parents are carriers. Get full testing done when other means fail. (ie borderline sweat tests, other symptoms etc..) If insurance is willing to pay for full testing and you need the piece of mind by all means go for it. For the masses of us out here who are flagged for false positives full testing is overkill and a money maker for the medical community.

 

[Buckeye]

Thanks for all your research on IRT levels, I'm sure that took you a great deal of time. I think what everyone is trying to tell you that if one of you is a carrier for the most common CF mutation, then you should probably find out if the other one of you carries a CF mutation. Your theory that you are testing for the <b>most common ones </b>is not accurate at all. I thought the same also when my son was first tested, but to quote Steve Keiles who is a geneticist "those are not the 97 most common mutations, they are just 97 mutations that happen to be on that panel. There is only one common mutation and all the rest are rare. There are a few mutations that occur more frequently but 99% of all mutation occur with a frequency of less than .1%.".I am not at all sure that it is a good idea to dissuade parents of babies that have had a high IRT test to not take it seriously. I think any child that had the remote possibility of having cf deserves to be thoroughly tested. I understand that you may feel that you were "cheated" by the system, but it really does save thousands of babies from going months without preventative treatment.

 

[Buckeye]

Thanks for all your research on IRT levels, I'm sure that took you a great deal of time. I think what everyone is trying to tell you that if one of you is a carrier for the most common CF mutation, then you should probably find out if the other one of you carries a CF mutation. Your theory that you are testing for the <b>most common ones </b>is not accurate at all. I thought the same also when my son was first tested, but to quote Steve Keiles who is a geneticist "those are not the 97 most common mutations, they are just 97 mutations that happen to be on that panel. There is only one common mutation and all the rest are rare. There are a few mutations that occur more frequently but 99% of all mutation occur with a frequency of less than .1%.".I am not at all sure that it is a good idea to dissuade parents of babies that have had a high IRT test to not take it seriously. I think any child that had the remote possibility of having cf deserves to be thoroughly tested. I understand that you may feel that you were "cheated" by the system, but it really does save thousands of babies from going months without preventative treatment.

 

[Buckeye]

Thanks for all your research on IRT levels, I'm sure that took you a great deal of time. I think what everyone is trying to tell you that if one of you is a carrier for the most common CF mutation, then you should probably find out if the other one of you carries a CF mutation. Your theory that you are testing for the <b>most common ones </b>is not accurate at all. I thought the same also when my son was first tested, but to quote Steve Keiles who is a geneticist "those are not the 97 most common mutations, they are just 97 mutations that happen to be on that panel. There is only one common mutation and all the rest are rare. There are a few mutations that occur more frequently but 99% of all mutation occur with a frequency of less than .1%.".I am not at all sure that it is a good idea to dissuade parents of babies that have had a high IRT test to not take it seriously. I think any child that had the remote possibility of having cf deserves to be thoroughly tested. I understand that you may feel that you were "cheated" by the system, but it really does save thousands of babies from going months without preventative treatment.

 

[Buckeye]

Thanks for all your research on IRT levels, I'm sure that took you a great deal of time. I think what everyone is trying to tell you that if one of you is a carrier for the most common CF mutation, then you should probably find out if the other one of you carries a CF mutation. Your theory that you are testing for the <b>most common ones </b>is not accurate at all. I thought the same also when my son was first tested, but to quote Steve Keiles who is a geneticist "those are not the 97 most common mutations, they are just 97 mutations that happen to be on that panel. There is only one common mutation and all the rest are rare. There are a few mutations that occur more frequently but 99% of all mutation occur with a frequency of less than .1%.".I am not at all sure that it is a good idea to dissuade parents of babies that have had a high IRT test to not take it seriously. I think any child that had the remote possibility of having cf deserves to be thoroughly tested. I understand that you may feel that you were "cheated" by the system, but it really does save thousands of babies from going months without preventative treatment.

 

[Buckeye]

<p>Thanks for all your research on IRT levels, I'm sure that took you a great deal of time. I think what everyone is trying to tell you that if one of you is a carrier for the most common CF mutation, then you should probably find out if the other one of you carries a CF mutation. Your theory that you are testing for the <b>most common ones </b>is not accurate at all. I thought the same also when my son was first tested, but to quote Steve Keiles who is a geneticist "those are not the 97 most common mutations, they are just 97 mutations that happen to be on that panel. There is only one common mutation and all the rest are rare. There are a few mutations that occur more frequently but 99% of all mutation occur with a frequency of less than .1%.".<p>I am not at all sure that it is a good idea to dissuade parents of babies that have had a high IRT test to not take it seriously. I think any child that had the remote possibility of having cf deserves to be thoroughly tested. I understand that you may feel that you were "cheated" by the system, but it really does save thousands of babies from going months without preventative treatment.

 

[tcb121]

Buckeye,

I don't feel cheated by the system. In fact I'm quite happy that we now know she is a carrier and we are both getting tested for the common markers to figure out if one or both of us are carriers. Full genetic testing I think is not needed for every case and is pushed quite heavy here. Our example is good proof. Two years ago our daughter would not have even been flagged for further testing. Today hospitals are doing more scans and lowering the criteria to capture all cases of CF. This also means more babies are flagged for false positives when their real chances of having CF are quite low. I'm not suggesting to parents to not be concerned or worried, but I'm giving them real data that shows real percentages of what the odds are based on IRT levels and a single mutation of the F508 gene. If your baby gets flagged for further testing and you know the IRT level and if the mutation is a single copy of the F508, then you can get a good idea of what the real odds of that newborn having CF is. If the IRT levels are below 140 the odds are near 0%. If they are above 300 you are looking at near 25% odds. Prior to 2006 IRT levels had to be above 180 here in Maryland to even get flagged. To some extent it is a money maker. On the other hand it is nice to know they are doing more testing and catching even the least likely cases of CF right from the start.

As to parents being tested before they have kids... If we went to get genetic screening and one parent had a single copy of a common CF gene and the other partner did not have any of the common markers they would tell you you are fine. The odds of having a CF baby under that criteria is a statistical anomaly. My point is the most common markers will capture the majority of cases and that full testing will capture the one in a million cases. Yes it is still possible that you could be that one in a million, but I think most of us would take the risks at those odds. By all means get full testing if you think you need it, but use some common sense also.

 

[tcb121]

Buckeye,

I don't feel cheated by the system. In fact I'm quite happy that we now know she is a carrier and we are both getting tested for the common markers to figure out if one or both of us are carriers. Full genetic testing I think is not needed for every case and is pushed quite heavy here. Our example is good proof. Two years ago our daughter would not have even been flagged for further testing. Today hospitals are doing more scans and lowering the criteria to capture all cases of CF. This also means more babies are flagged for false positives when their real chances of having CF are quite low. I'm not suggesting to parents to not be concerned or worried, but I'm giving them real data that shows real percentages of what the odds are based on IRT levels and a single mutation of the F508 gene. If your baby gets flagged for further testing and you know the IRT level and if the mutation is a single copy of the F508, then you can get a good idea of what the real odds of that newborn having CF is. If the IRT levels are below 140 the odds are near 0%. If they are above 300 you are looking at near 25% odds. Prior to 2006 IRT levels had to be above 180 here in Maryland to even get flagged. To some extent it is a money maker. On the other hand it is nice to know they are doing more testing and catching even the least likely cases of CF right from the start.

As to parents being tested before they have kids... If we went to get genetic screening and one parent had a single copy of a common CF gene and the other partner did not have any of the common markers they would tell you you are fine. The odds of having a CF baby under that criteria is a statistical anomaly. My point is the most common markers will capture the majority of cases and that full testing will capture the one in a million cases. Yes it is still possible that you could be that one in a million, but I think most of us would take the risks at those odds. By all means get full testing if you think you need it, but use some common sense also.

 

[tcb121]

Buckeye,

I don't feel cheated by the system. In fact I'm quite happy that we now know she is a carrier and we are both getting tested for the common markers to figure out if one or both of us are carriers. Full genetic testing I think is not needed for every case and is pushed quite heavy here. Our example is good proof. Two years ago our daughter would not have even been flagged for further testing. Today hospitals are doing more scans and lowering the criteria to capture all cases of CF. This also means more babies are flagged for false positives when their real chances of having CF are quite low. I'm not suggesting to parents to not be concerned or worried, but I'm giving them real data that shows real percentages of what the odds are based on IRT levels and a single mutation of the F508 gene. If your baby gets flagged for further testing and you know the IRT level and if the mutation is a single copy of the F508, then you can get a good idea of what the real odds of that newborn having CF is. If the IRT levels are below 140 the odds are near 0%. If they are above 300 you are looking at near 25% odds. Prior to 2006 IRT levels had to be above 180 here in Maryland to even get flagged. To some extent it is a money maker. On the other hand it is nice to know they are doing more testing and catching even the least likely cases of CF right from the start.

As to parents being tested before they have kids... If we went to get genetic screening and one parent had a single copy of a common CF gene and the other partner did not have any of the common markers they would tell you you are fine. The odds of having a CF baby under that criteria is a statistical anomaly. My point is the most common markers will capture the majority of cases and that full testing will capture the one in a million cases. Yes it is still possible that you could be that one in a million, but I think most of us would take the risks at those odds. By all means get full testing if you think you need it, but use some common sense also.

 

[tcb121]

Buckeye,

I don't feel cheated by the system. In fact I'm quite happy that we now know she is a carrier and we are both getting tested for the common markers to figure out if one or both of us are carriers. Full genetic testing I think is not needed for every case and is pushed quite heavy here. Our example is good proof. Two years ago our daughter would not have even been flagged for further testing. Today hospitals are doing more scans and lowering the criteria to capture all cases of CF. This also means more babies are flagged for false positives when their real chances of having CF are quite low. I'm not suggesting to parents to not be concerned or worried, but I'm giving them real data that shows real percentages of what the odds are based on IRT levels and a single mutation of the F508 gene. If your baby gets flagged for further testing and you know the IRT level and if the mutation is a single copy of the F508, then you can get a good idea of what the real odds of that newborn having CF is. If the IRT levels are below 140 the odds are near 0%. If they are above 300 you are looking at near 25% odds. Prior to 2006 IRT levels had to be above 180 here in Maryland to even get flagged. To some extent it is a money maker. On the other hand it is nice to know they are doing more testing and catching even the least likely cases of CF right from the start.

As to parents being tested before they have kids... If we went to get genetic screening and one parent had a single copy of a common CF gene and the other partner did not have any of the common markers they would tell you you are fine. The odds of having a CF baby under that criteria is a statistical anomaly. My point is the most common markers will capture the majority of cases and that full testing will capture the one in a million cases. Yes it is still possible that you could be that one in a million, but I think most of us would take the risks at those odds. By all means get full testing if you think you need it, but use some common sense also.

 

[tcb121]

Buckeye,
<br />
<br />I don't feel cheated by the system. In fact I'm quite happy that we now know she is a carrier and we are both getting tested for the common markers to figure out if one or both of us are carriers. Full genetic testing I think is not needed for every case and is pushed quite heavy here. Our example is good proof. Two years ago our daughter would not have even been flagged for further testing. Today hospitals are doing more scans and lowering the criteria to capture all cases of CF. This also means more babies are flagged for false positives when their real chances of having CF are quite low. I'm not suggesting to parents to not be concerned or worried, but I'm giving them real data that shows real percentages of what the odds are based on IRT levels and a single mutation of the F508 gene. If your baby gets flagged for further testing and you know the IRT level and if the mutation is a single copy of the F508, then you can get a good idea of what the real odds of that newborn having CF is. If the IRT levels are below 140 the odds are near 0%. If they are above 300 you are looking at near 25% odds. Prior to 2006 IRT levels had to be above 180 here in Maryland to even get flagged. To some extent it is a money maker. On the other hand it is nice to know they are doing more testing and catching even the least likely cases of CF right from the start.
<br />
<br />As to parents being tested before they have kids... If we went to get genetic screening and one parent had a single copy of a common CF gene and the other partner did not have any of the common markers they would tell you you are fine. The odds of having a CF baby under that criteria is a statistical anomaly. My point is the most common markers will capture the majority of cases and that full testing will capture the one in a million cases. Yes it is still possible that you could be that one in a million, but I think most of us would take the risks at those odds. By all means get full testing if you think you need it, but use some common sense also.

 

[pypersmom]

I have to agree with tcb121, we where in the same situation as you. tcb121 did excellent research, which our CF dr agreed and knew about the study. I came to this website for answers and I felt attacked about full panel genetic testing even after we had two negative sweat tests. And went to see a CF specialists who suggested we too not have the full panel testing. I have to agree that you have to trust yourself but use common sense also. We are perfectly happy and secure that our daughter does not have CF. We trusted our medical team but most of all trusted the Lord, he is a healing God.

I am sorry for all of these parents that go through this process and do find their child have CF. I am saddened for them and hurt for some people on here because they are understanding of every situation and do not try to make you feel guilty.

I quite frankly, think that alot of people on this site over step bounds and try and make you feel like a bad parent if you don't do what they do/did. I vowed never to look at this site again for that reason, and I am sorry that I checked back on this site to see such negative responses to tcb121, why try to take someone's happiness!?!?! I will never again look at this website.
this time I will not return to this site!!

 

[pypersmom]

I have to agree with tcb121, we where in the same situation as you. tcb121 did excellent research, which our CF dr agreed and knew about the study. I came to this website for answers and I felt attacked about full panel genetic testing even after we had two negative sweat tests. And went to see a CF specialists who suggested we too not have the full panel testing. I have to agree that you have to trust yourself but use common sense also. We are perfectly happy and secure that our daughter does not have CF. We trusted our medical team but most of all trusted the Lord, he is a healing God.

I am sorry for all of these parents that go through this process and do find their child have CF. I am saddened for them and hurt for some people on here because they are understanding of every situation and do not try to make you feel guilty.

I quite frankly, think that alot of people on this site over step bounds and try and make you feel like a bad parent if you don't do what they do/did. I vowed never to look at this site again for that reason, and I am sorry that I checked back on this site to see such negative responses to tcb121, why try to take someone's happiness!?!?! I will never again look at this website.
this time I will not return to this site!!

 

[pypersmom]

I have to agree with tcb121, we where in the same situation as you. tcb121 did excellent research, which our CF dr agreed and knew about the study. I came to this website for answers and I felt attacked about full panel genetic testing even after we had two negative sweat tests. And went to see a CF specialists who suggested we too not have the full panel testing. I have to agree that you have to trust yourself but use common sense also. We are perfectly happy and secure that our daughter does not have CF. We trusted our medical team but most of all trusted the Lord, he is a healing God.

I am sorry for all of these parents that go through this process and do find their child have CF. I am saddened for them and hurt for some people on here because they are understanding of every situation and do not try to make you feel guilty.

I quite frankly, think that alot of people on this site over step bounds and try and make you feel like a bad parent if you don't do what they do/did. I vowed never to look at this site again for that reason, and I am sorry that I checked back on this site to see such negative responses to tcb121, why try to take someone's happiness!?!?! I will never again look at this website.
this time I will not return to this site!!

 

[pypersmom]

I have to agree with tcb121, we where in the same situation as you. tcb121 did excellent research, which our CF dr agreed and knew about the study. I came to this website for answers and I felt attacked about full panel genetic testing even after we had two negative sweat tests. And went to see a CF specialists who suggested we too not have the full panel testing. I have to agree that you have to trust yourself but use common sense also. We are perfectly happy and secure that our daughter does not have CF. We trusted our medical team but most of all trusted the Lord, he is a healing God.

I am sorry for all of these parents that go through this process and do find their child have CF. I am saddened for them and hurt for some people on here because they are understanding of every situation and do not try to make you feel guilty.

I quite frankly, think that alot of people on this site over step bounds and try and make you feel like a bad parent if you don't do what they do/did. I vowed never to look at this site again for that reason, and I am sorry that I checked back on this site to see such negative responses to tcb121, why try to take someone's happiness!?!?! I will never again look at this website.
this time I will not return to this site!!

 

[pypersmom]

I have to agree with tcb121, we where in the same situation as you. tcb121 did excellent research, which our CF dr agreed and knew about the study. I came to this website for answers and I felt attacked about full panel genetic testing even after we had two negative sweat tests. And went to see a CF specialists who suggested we too not have the full panel testing. I have to agree that you have to trust yourself but use common sense also. We are perfectly happy and secure that our daughter does not have CF. We trusted our medical team but most of all trusted the Lord, he is a healing God.
<br />
<br />I am sorry for all of these parents that go through this process and do find their child have CF. I am saddened for them and hurt for some people on here because they are understanding of every situation and do not try to make you feel guilty.
<br />
<br />I quite frankly, think that alot of people on this site over step bounds and try and make you feel like a bad parent if you don't do what they do/did. I vowed never to look at this site again for that reason, and I am sorry that I checked back on this site to see such negative responses to tcb121, why try to take someone's happiness!?!?! I will never again look at this website.
<br />this time I will not return to this site!!