Just Found Out...

JNM · Jan 7, 2009

My wife was screened in her pregnancies with our first child and second child and her file showed that she is not a carrier of the CF gene. I (dad) have not been screened yet. Out of our first two daughters (6yr) has taken a sweat test and came back good. Our second (2yr) has not yet. (we scheduled it for next week)

We just had a baby boy 10 days ago and at our ped visit today we were told that our son's IRT is 66ng/ml and we were sent to take another blood test today. We are waiting for the results.

My wife and I have been scouring the internet for info on CF and have found this forum to be very helpful. My questions that my wife and I have are, "Is it possible for our son to have CF if I am the only carrier?" In otherwords we both need to be carriers of the gene for this to be a positive test.

My next question as I wait for a few days for the test to come back, do IRT numbers increase in CF patients as they grow older or do they always remain the same?

If our IRT comes back lower, does that mean he doesnt have it or he has a mild case?

Does the IRT number signify the severity of CF?

I know I have numerous questions, but I cannot sleep or eat and want to be educated as possible on the matter.

JNM · Jan 7, 2009

My wife was screened in her pregnancies with our first child and second child and her file showed that she is not a carrier of the CF gene. I (dad) have not been screened yet. Out of our first two daughters (6yr) has taken a sweat test and came back good. Our second (2yr) has not yet. (we scheduled it for next week)

We just had a baby boy 10 days ago and at our ped visit today we were told that our son's IRT is 66ng/ml and we were sent to take another blood test today. We are waiting for the results.

My wife and I have been scouring the internet for info on CF and have found this forum to be very helpful. My questions that my wife and I have are, "Is it possible for our son to have CF if I am the only carrier?" In otherwords we both need to be carriers of the gene for this to be a positive test.

My next question as I wait for a few days for the test to come back, do IRT numbers increase in CF patients as they grow older or do they always remain the same?

If our IRT comes back lower, does that mean he doesnt have it or he has a mild case?

Does the IRT number signify the severity of CF?

I know I have numerous questions, but I cannot sleep or eat and want to be educated as possible on the matter.

JNM · Jan 7, 2009

My wife was screened in her pregnancies with our first child and second child and her file showed that she is not a carrier of the CF gene. I (dad) have not been screened yet. Out of our first two daughters (6yr) has taken a sweat test and came back good. Our second (2yr) has not yet. (we scheduled it for next week)

We just had a baby boy 10 days ago and at our ped visit today we were told that our son's IRT is 66ng/ml and we were sent to take another blood test today. We are waiting for the results.

My wife and I have been scouring the internet for info on CF and have found this forum to be very helpful. My questions that my wife and I have are, "Is it possible for our son to have CF if I am the only carrier?" In otherwords we both need to be carriers of the gene for this to be a positive test.

My next question as I wait for a few days for the test to come back, do IRT numbers increase in CF patients as they grow older or do they always remain the same?

If our IRT comes back lower, does that mean he doesnt have it or he has a mild case?

Does the IRT number signify the severity of CF?

I know I have numerous questions, but I cannot sleep or eat and want to be educated as possible on the matter.

JNM · Jan 7, 2009

My wife was screened in her pregnancies with our first child and second child and her file showed that she is not a carrier of the CF gene. I (dad) have not been screened yet. Out of our first two daughters (6yr) has taken a sweat test and came back good. Our second (2yr) has not yet. (we scheduled it for next week)

We just had a baby boy 10 days ago and at our ped visit today we were told that our son's IRT is 66ng/ml and we were sent to take another blood test today. We are waiting for the results.

My wife and I have been scouring the internet for info on CF and have found this forum to be very helpful. My questions that my wife and I have are, "Is it possible for our son to have CF if I am the only carrier?" In otherwords we both need to be carriers of the gene for this to be a positive test.

My next question as I wait for a few days for the test to come back, do IRT numbers increase in CF patients as they grow older or do they always remain the same?

If our IRT comes back lower, does that mean he doesnt have it or he has a mild case?

Does the IRT number signify the severity of CF?

I know I have numerous questions, but I cannot sleep or eat and want to be educated as possible on the matter.

JNM · Jan 7, 2009

My wife was screened in her pregnancies with our first child and second child and her file showed that she is not a carrier of the CF gene. I (dad) have not been screened yet. Out of our first two daughters (6yr) has taken a sweat test and came back good. Our second (2yr) has not yet. (we scheduled it for next week)
 
 We just had a baby boy 10 days ago and at our ped visit today we were told that our son's IRT is 66ng/ml and we were sent to take another blood test today. We are waiting for the results.
 
 My wife and I have been scouring the internet for info on CF and have found this forum to be very helpful. My questions that my wife and I have are, "Is it possible for our son to have CF if I am the only carrier?" In otherwords we both need to be carriers of the gene for this to be a positive test.
 
 My next question as I wait for a few days for the test to come back, do IRT numbers increase in CF patients as they grow older or do they always remain the same?
 
 If our IRT comes back lower, does that mean he doesnt have it or he has a mild case?
 
 Does the IRT number signify the severity of CF?
 
 I know I have numerous questions, but I cannot sleep or eat and want to be educated as possible on the matter.

JazzysMom · Jan 7, 2009

I am not sure about the numbers that you specifically asked about. What I can tell you is this.....

The screenings that were done on your wife are JUST THAT. Screening. It doesnt cover every mutation known for CF. It covers some of the most common ones which is a drop in the bucket.

Now BOTH of you do have to be carriers for the child to get CF itself, but then its only a 25% chance with each pregnancy. A 50% chance of the child being a carrier & 25% chance of neither.

Numbers & mutations can not dictate for sure the severity of a case of CF. Gene mutations can give an indication on what characteristics normally come with it. Like DF508 (the most common) is linked to digestive and respiratory issues where others might be more digestive.

That all being said....just like your wife's screening was JUST that.....this also applies to the baby. Just because the screening triggered a red flag does guarantee CF. It just means additional testing needs to be done.

I know its very difficult to sit & wait, but IF it turns out that your child has CF you are in the right place. PLEASE dont put the cart before the horse. Additional testing will probably need to be done if nothing else!

Good Luck & Keep us informed either way~!

JazzysMom · Jan 7, 2009

I am not sure about the numbers that you specifically asked about. What I can tell you is this.....

The screenings that were done on your wife are JUST THAT. Screening. It doesnt cover every mutation known for CF. It covers some of the most common ones which is a drop in the bucket.

Now BOTH of you do have to be carriers for the child to get CF itself, but then its only a 25% chance with each pregnancy. A 50% chance of the child being a carrier & 25% chance of neither.

Numbers & mutations can not dictate for sure the severity of a case of CF. Gene mutations can give an indication on what characteristics normally come with it. Like DF508 (the most common) is linked to digestive and respiratory issues where others might be more digestive.

That all being said....just like your wife's screening was JUST that.....this also applies to the baby. Just because the screening triggered a red flag does guarantee CF. It just means additional testing needs to be done.

I know its very difficult to sit & wait, but IF it turns out that your child has CF you are in the right place. PLEASE dont put the cart before the horse. Additional testing will probably need to be done if nothing else!

Good Luck & Keep us informed either way~!

JazzysMom · Jan 7, 2009

I am not sure about the numbers that you specifically asked about. What I can tell you is this.....

The screenings that were done on your wife are JUST THAT. Screening. It doesnt cover every mutation known for CF. It covers some of the most common ones which is a drop in the bucket.

Now BOTH of you do have to be carriers for the child to get CF itself, but then its only a 25% chance with each pregnancy. A 50% chance of the child being a carrier & 25% chance of neither.

Numbers & mutations can not dictate for sure the severity of a case of CF. Gene mutations can give an indication on what characteristics normally come with it. Like DF508 (the most common) is linked to digestive and respiratory issues where others might be more digestive.

That all being said....just like your wife's screening was JUST that.....this also applies to the baby. Just because the screening triggered a red flag does guarantee CF. It just means additional testing needs to be done.

I know its very difficult to sit & wait, but IF it turns out that your child has CF you are in the right place. PLEASE dont put the cart before the horse. Additional testing will probably need to be done if nothing else!

Good Luck & Keep us informed either way~!

JazzysMom · Jan 7, 2009

I am not sure about the numbers that you specifically asked about. What I can tell you is this.....

The screenings that were done on your wife are JUST THAT. Screening. It doesnt cover every mutation known for CF. It covers some of the most common ones which is a drop in the bucket.

Now BOTH of you do have to be carriers for the child to get CF itself, but then its only a 25% chance with each pregnancy. A 50% chance of the child being a carrier & 25% chance of neither.

Numbers & mutations can not dictate for sure the severity of a case of CF. Gene mutations can give an indication on what characteristics normally come with it. Like DF508 (the most common) is linked to digestive and respiratory issues where others might be more digestive.

That all being said....just like your wife's screening was JUST that.....this also applies to the baby. Just because the screening triggered a red flag does guarantee CF. It just means additional testing needs to be done.

I know its very difficult to sit & wait, but IF it turns out that your child has CF you are in the right place. PLEASE dont put the cart before the horse. Additional testing will probably need to be done if nothing else!

Good Luck & Keep us informed either way~!

JazzysMom · Jan 7, 2009

I am not sure about the numbers that you specifically asked about. What I can tell you is this.....
 
 The screenings that were done on your wife are JUST THAT. Screening. It doesnt cover every mutation known for CF. It covers some of the most common ones which is a drop in the bucket.
 
 Now BOTH of you do have to be carriers for the child to get CF itself, but then its only a 25% chance with each pregnancy. A 50% chance of the child being a carrier & 25% chance of neither.
 
 Numbers & mutations can not dictate for sure the severity of a case of CF. Gene mutations can give an indication on what characteristics normally come with it. Like DF508 (the most common) is linked to digestive and respiratory issues where others might be more digestive.
 
 That all being said....just like your wife's screening was JUST that.....this also applies to the baby. Just because the screening triggered a red flag does guarantee CF. It just means additional testing needs to be done.
 
 I know its very difficult to sit & wait, but IF it turns out that your child has CF you are in the right place. PLEASE dont put the cart before the horse. Additional testing will probably need to be done if nothing else!
 
 Good Luck & Keep us informed either way~!

fourkidsmom · Jan 7, 2009

Welcome! This is how I understand it to work.
Your wife and yourself BOTH have to be carriers in order for your children to possibly have CF. IF your wife and yourself are carriers then the kids have a 25% chance of having CF, or a 25% chance of no cf or carrier, or a 50% chance of being a carrier.(which has no symptoms)

fourkidsmom · Jan 7, 2009

Welcome! This is how I understand it to work.
Your wife and yourself BOTH have to be carriers in order for your children to possibly have CF. IF your wife and yourself are carriers then the kids have a 25% chance of having CF, or a 25% chance of no cf or carrier, or a 50% chance of being a carrier.(which has no symptoms)

fourkidsmom · Jan 7, 2009

Welcome! This is how I understand it to work.
Your wife and yourself BOTH have to be carriers in order for your children to possibly have CF. IF your wife and yourself are carriers then the kids have a 25% chance of having CF, or a 25% chance of no cf or carrier, or a 50% chance of being a carrier.(which has no symptoms)

fourkidsmom · Jan 7, 2009

Welcome! This is how I understand it to work.
Your wife and yourself BOTH have to be carriers in order for your children to possibly have CF. IF your wife and yourself are carriers then the kids have a 25% chance of having CF, or a 25% chance of no cf or carrier, or a 50% chance of being a carrier.(which has no symptoms)

fourkidsmom · Jan 7, 2009

Welcome! This is how I understand it to work.
 Your wife and yourself BOTH have to be carriers in order for your children to possibly have CF. IF your wife and yourself are carriers then the kids have a 25% chance of having CF, or a 25% chance of no cf or carrier, or a 50% chance of being a carrier.(which has no symptoms)

Mommafirst · Jan 7, 2009

Welcome.

I'm so sorry that you are dealing with this very stressful news. I have done a bit of research on the newborn screen in the past. From what I understand, about 90% of the time when the IRT comes back high, it is usually a case of the child being a carrier of the CF gene and not one that has CF. Only a small percentage of positive newborn screens are true CF cases, though there are very few incidences of false negatives -- the exception ironically being babies born with meconium illeus (a bowel obstruction that is highly correlated with CF).

If your wife is truly NOT a carrier, then your child can not have CF. However, carrier screens only tend to look at a few CF mutations (the most common ones) out of over 1500+ known mutations. True carrier status would require a very expensive gene analysis that is usually saved for actual patient diagnosis.

IRT numbers are not a diagnostic for CF, just a red flag, so there is no correlation to CF severity.

I hope this all helps. Chances are good that this is just a false positive. I hope you won't need us here.

Mommafirst · Jan 7, 2009

Welcome.

I'm so sorry that you are dealing with this very stressful news. I have done a bit of research on the newborn screen in the past. From what I understand, about 90% of the time when the IRT comes back high, it is usually a case of the child being a carrier of the CF gene and not one that has CF. Only a small percentage of positive newborn screens are true CF cases, though there are very few incidences of false negatives -- the exception ironically being babies born with meconium illeus (a bowel obstruction that is highly correlated with CF).

If your wife is truly NOT a carrier, then your child can not have CF. However, carrier screens only tend to look at a few CF mutations (the most common ones) out of over 1500+ known mutations. True carrier status would require a very expensive gene analysis that is usually saved for actual patient diagnosis.

IRT numbers are not a diagnostic for CF, just a red flag, so there is no correlation to CF severity.

I hope this all helps. Chances are good that this is just a false positive. I hope you won't need us here.

Mommafirst · Jan 7, 2009

Welcome.

I'm so sorry that you are dealing with this very stressful news. I have done a bit of research on the newborn screen in the past. From what I understand, about 90% of the time when the IRT comes back high, it is usually a case of the child being a carrier of the CF gene and not one that has CF. Only a small percentage of positive newborn screens are true CF cases, though there are very few incidences of false negatives -- the exception ironically being babies born with meconium illeus (a bowel obstruction that is highly correlated with CF).

If your wife is truly NOT a carrier, then your child can not have CF. However, carrier screens only tend to look at a few CF mutations (the most common ones) out of over 1500+ known mutations. True carrier status would require a very expensive gene analysis that is usually saved for actual patient diagnosis.

IRT numbers are not a diagnostic for CF, just a red flag, so there is no correlation to CF severity.

I hope this all helps. Chances are good that this is just a false positive. I hope you won't need us here.

Mommafirst · Jan 7, 2009

Welcome.

I'm so sorry that you are dealing with this very stressful news. I have done a bit of research on the newborn screen in the past. From what I understand, about 90% of the time when the IRT comes back high, it is usually a case of the child being a carrier of the CF gene and not one that has CF. Only a small percentage of positive newborn screens are true CF cases, though there are very few incidences of false negatives -- the exception ironically being babies born with meconium illeus (a bowel obstruction that is highly correlated with CF).

If your wife is truly NOT a carrier, then your child can not have CF. However, carrier screens only tend to look at a few CF mutations (the most common ones) out of over 1500+ known mutations. True carrier status would require a very expensive gene analysis that is usually saved for actual patient diagnosis.

IRT numbers are not a diagnostic for CF, just a red flag, so there is no correlation to CF severity.

I hope this all helps. Chances are good that this is just a false positive. I hope you won't need us here.

Mommafirst · Jan 7, 2009

Welcome.
 
 I'm so sorry that you are dealing with this very stressful news. I have done a bit of research on the newborn screen in the past. From what I understand, about 90% of the time when the IRT comes back high, it is usually a case of the child being a carrier of the CF gene and not one that has CF. Only a small percentage of positive newborn screens are true CF cases, though there are very few incidences of false negatives -- the exception ironically being babies born with meconium illeus (a bowel obstruction that is highly correlated with CF).
 
 If your wife is truly NOT a carrier, then your child can not have CF. However, carrier screens only tend to look at a few CF mutations (the most common ones) out of over 1500+ known mutations. True carrier status would require a very expensive gene analysis that is usually saved for actual patient diagnosis.
 
 IRT numbers are not a diagnostic for CF, just a red flag, so there is no correlation to CF severity.
 
 I hope this all helps. Chances are good that this is just a false positive. I hope you won't need us here.

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