Please help me, im losing it

melissa81 · Oct 5, 2008

HI. I need some help. I am a new mom with a week old baby.
I got a call the other day that my baby came back positive for a cf gene. Im soo confused and scared now.

I was tested during my pregnancy and was negative.
My pedi also told me that there is "false positives" on the newborn screening that was done on the baby also.
I have to take her for a sweat test wednesday and im making myself crazy. Im crying, then im not, then i am..
I just need someone to help meunderstand this.
What are her chances of having cf if i was negative? They told me she was a "low risk positive" but i feel im getting the run around until this test.
The dr from the lab ( yes i called them too) said she showed positive for a gene... but then how is it possible for a false positive? Does a sweat test show if shes even a carrier?
Im sorry if this makes no sense... im just an emotional wreck right now. I feel my first week with my baby is being ruined by this news.

also, she was two weeks early and they mentioned that can show a "false positive".

Any help would be appreciated. Thanks.
also neither my husband or myself have family history for cf...

melissa81 · Oct 5, 2008

HI. I need some help. I am a new mom with a week old baby.
I got a call the other day that my baby came back positive for a cf gene. Im soo confused and scared now.

I was tested during my pregnancy and was negative.
My pedi also told me that there is "false positives" on the newborn screening that was done on the baby also.
I have to take her for a sweat test wednesday and im making myself crazy. Im crying, then im not, then i am..
I just need someone to help meunderstand this.
What are her chances of having cf if i was negative? They told me she was a "low risk positive" but i feel im getting the run around until this test.
The dr from the lab ( yes i called them too) said she showed positive for a gene... but then how is it possible for a false positive? Does a sweat test show if shes even a carrier?
Im sorry if this makes no sense... im just an emotional wreck right now. I feel my first week with my baby is being ruined by this news.

also, she was two weeks early and they mentioned that can show a "false positive".

Any help would be appreciated. Thanks.
also neither my husband or myself have family history for cf...

melissa81 · Oct 5, 2008

HI. I need some help. I am a new mom with a week old baby.
I got a call the other day that my baby came back positive for a cf gene. Im soo confused and scared now.

I was tested during my pregnancy and was negative.
My pedi also told me that there is "false positives" on the newborn screening that was done on the baby also.
I have to take her for a sweat test wednesday and im making myself crazy. Im crying, then im not, then i am..
I just need someone to help meunderstand this.
What are her chances of having cf if i was negative? They told me she was a "low risk positive" but i feel im getting the run around until this test.
The dr from the lab ( yes i called them too) said she showed positive for a gene... but then how is it possible for a false positive? Does a sweat test show if shes even a carrier?
Im sorry if this makes no sense... im just an emotional wreck right now. I feel my first week with my baby is being ruined by this news.

also, she was two weeks early and they mentioned that can show a "false positive".

Any help would be appreciated. Thanks.
also neither my husband or myself have family history for cf...

melissa81 · Oct 5, 2008

HI. I need some help. I am a new mom with a week old baby.
I got a call the other day that my baby came back positive for a cf gene. Im soo confused and scared now.

I was tested during my pregnancy and was negative.
My pedi also told me that there is "false positives" on the newborn screening that was done on the baby also.
I have to take her for a sweat test wednesday and im making myself crazy. Im crying, then im not, then i am..
I just need someone to help meunderstand this.
What are her chances of having cf if i was negative? They told me she was a "low risk positive" but i feel im getting the run around until this test.
The dr from the lab ( yes i called them too) said she showed positive for a gene... but then how is it possible for a false positive? Does a sweat test show if shes even a carrier?
Im sorry if this makes no sense... im just an emotional wreck right now. I feel my first week with my baby is being ruined by this news.

also, she was two weeks early and they mentioned that can show a "false positive".

Any help would be appreciated. Thanks.
also neither my husband or myself have family history for cf...

melissa81 · Oct 5, 2008

HI. I need some help. I am a new mom with a week old baby.
 I got a call the other day that my baby came back positive for a cf gene. Im soo confused and scared now.
 
 I was tested during my pregnancy and was negative.
 My pedi also told me that there is "false positives" on the newborn screening that was done on the baby also.
 I have to take her for a sweat test wednesday and im making myself crazy. Im crying, then im not, then i am..
 I just need someone to help meunderstand this.
 What are her chances of having cf if i was negative? They told me she was a "low risk positive" but i feel im getting the run around until this test.
 The dr from the lab ( yes i called them too) said she showed positive for a gene... but then how is it possible for a false positive? Does a sweat test show if shes even a carrier?
 Im sorry if this makes no sense... im just an emotional wreck right now. I feel my first week with my baby is being ruined by this news.
 
 also, she was two weeks early and they mentioned that can show a "false positive".
 
 Any help would be appreciated. Thanks.
 also neither my husband or myself have family history for cf...

Alyssa · Oct 5, 2008

No family history is quite common as until two people come together who both are carriers, a child with CF will not be produced. The majority of us here have no family history of CF either, because our siblings or parents didn't partner up with another carrier.

CF happens when a person inherits two CF genes (one from the mother and one from the father) You may have passed a genetic screening for CF genes, but it is likely that you were only tested for about 30 genes. There are 1561 gene mutations that cause CF, so if you passed a screening, it is still possible that you have one CF gene that was not tested for and you husband could also have one of the 1561 CF gene mutations....having said that though, it is still very likely that you are dealing with a false positive or that the marker indicates her having only one gene (carrier status only, not CF)

Please try to not worry just yet (I know a near impossible thing to ask) but it sounds like you need to have some more complete testing before you assume she has CF.

I'm not very well versed in the newborn screening, but there are what they call markers or indicators that one or more CF genes might be present, but the test is not for finding the genes themselves just the indication they might be present and yes, it does give false positives - the screening does not detect actual CF genes

I'll see what other info I can find for you about the newborn screening, but for now I'd say you are better off just waiting for the sweat testing (which carries it own set of problems with giving false negatives, but that's a story for another set of circumstances) If they said she is a low risk positive, I would venture a guess that the markers found something, but if they are calling it low risk I wouldn't get too concerned just yet.

Ask your doctor to explain to you the difference between what they are looking for in the screening verses what they are looking for with a full genetic testing - it is quite different. If you follow through with sweat testing and gene testing and you see no CF symptoms, you can safely move on with your lives and not have to think about CF again. These newborn screenings are a wonderful thing for getting the jump on a diagnosis and proper treatment for those who do have CF, unfortunately for some people, they have to go through the process to find out their child is perfectly healthy - I'm placing my bets that this is what will happen for you.

I'll post again if I can find some more information for you - again unless your baby is showing CF symptoms that you haven't mentioned, chances are you really are dealing with a false positive or carrier status only (which will not be life threatening for her)

Hang in there and let us know what happens

Alyssa · Oct 5, 2008

No family history is quite common as until two people come together who both are carriers, a child with CF will not be produced. The majority of us here have no family history of CF either, because our siblings or parents didn't partner up with another carrier.

CF happens when a person inherits two CF genes (one from the mother and one from the father) You may have passed a genetic screening for CF genes, but it is likely that you were only tested for about 30 genes. There are 1561 gene mutations that cause CF, so if you passed a screening, it is still possible that you have one CF gene that was not tested for and you husband could also have one of the 1561 CF gene mutations....having said that though, it is still very likely that you are dealing with a false positive or that the marker indicates her having only one gene (carrier status only, not CF)

Please try to not worry just yet (I know a near impossible thing to ask) but it sounds like you need to have some more complete testing before you assume she has CF.

I'm not very well versed in the newborn screening, but there are what they call markers or indicators that one or more CF genes might be present, but the test is not for finding the genes themselves just the indication they might be present and yes, it does give false positives - the screening does not detect actual CF genes

I'll see what other info I can find for you about the newborn screening, but for now I'd say you are better off just waiting for the sweat testing (which carries it own set of problems with giving false negatives, but that's a story for another set of circumstances) If they said she is a low risk positive, I would venture a guess that the markers found something, but if they are calling it low risk I wouldn't get too concerned just yet.

Ask your doctor to explain to you the difference between what they are looking for in the screening verses what they are looking for with a full genetic testing - it is quite different. If you follow through with sweat testing and gene testing and you see no CF symptoms, you can safely move on with your lives and not have to think about CF again. These newborn screenings are a wonderful thing for getting the jump on a diagnosis and proper treatment for those who do have CF, unfortunately for some people, they have to go through the process to find out their child is perfectly healthy - I'm placing my bets that this is what will happen for you.

I'll post again if I can find some more information for you - again unless your baby is showing CF symptoms that you haven't mentioned, chances are you really are dealing with a false positive or carrier status only (which will not be life threatening for her)

Hang in there and let us know what happens

Alyssa · Oct 5, 2008

No family history is quite common as until two people come together who both are carriers, a child with CF will not be produced. The majority of us here have no family history of CF either, because our siblings or parents didn't partner up with another carrier.

CF happens when a person inherits two CF genes (one from the mother and one from the father) You may have passed a genetic screening for CF genes, but it is likely that you were only tested for about 30 genes. There are 1561 gene mutations that cause CF, so if you passed a screening, it is still possible that you have one CF gene that was not tested for and you husband could also have one of the 1561 CF gene mutations....having said that though, it is still very likely that you are dealing with a false positive or that the marker indicates her having only one gene (carrier status only, not CF)

Please try to not worry just yet (I know a near impossible thing to ask) but it sounds like you need to have some more complete testing before you assume she has CF.

I'm not very well versed in the newborn screening, but there are what they call markers or indicators that one or more CF genes might be present, but the test is not for finding the genes themselves just the indication they might be present and yes, it does give false positives - the screening does not detect actual CF genes

I'll see what other info I can find for you about the newborn screening, but for now I'd say you are better off just waiting for the sweat testing (which carries it own set of problems with giving false negatives, but that's a story for another set of circumstances) If they said she is a low risk positive, I would venture a guess that the markers found something, but if they are calling it low risk I wouldn't get too concerned just yet.

Ask your doctor to explain to you the difference between what they are looking for in the screening verses what they are looking for with a full genetic testing - it is quite different. If you follow through with sweat testing and gene testing and you see no CF symptoms, you can safely move on with your lives and not have to think about CF again. These newborn screenings are a wonderful thing for getting the jump on a diagnosis and proper treatment for those who do have CF, unfortunately for some people, they have to go through the process to find out their child is perfectly healthy - I'm placing my bets that this is what will happen for you.

I'll post again if I can find some more information for you - again unless your baby is showing CF symptoms that you haven't mentioned, chances are you really are dealing with a false positive or carrier status only (which will not be life threatening for her)

Hang in there and let us know what happens

Alyssa · Oct 5, 2008

No family history is quite common as until two people come together who both are carriers, a child with CF will not be produced. The majority of us here have no family history of CF either, because our siblings or parents didn't partner up with another carrier.

CF happens when a person inherits two CF genes (one from the mother and one from the father) You may have passed a genetic screening for CF genes, but it is likely that you were only tested for about 30 genes. There are 1561 gene mutations that cause CF, so if you passed a screening, it is still possible that you have one CF gene that was not tested for and you husband could also have one of the 1561 CF gene mutations....having said that though, it is still very likely that you are dealing with a false positive or that the marker indicates her having only one gene (carrier status only, not CF)

Please try to not worry just yet (I know a near impossible thing to ask) but it sounds like you need to have some more complete testing before you assume she has CF.

I'm not very well versed in the newborn screening, but there are what they call markers or indicators that one or more CF genes might be present, but the test is not for finding the genes themselves just the indication they might be present and yes, it does give false positives - the screening does not detect actual CF genes

I'll see what other info I can find for you about the newborn screening, but for now I'd say you are better off just waiting for the sweat testing (which carries it own set of problems with giving false negatives, but that's a story for another set of circumstances) If they said she is a low risk positive, I would venture a guess that the markers found something, but if they are calling it low risk I wouldn't get too concerned just yet.

Ask your doctor to explain to you the difference between what they are looking for in the screening verses what they are looking for with a full genetic testing - it is quite different. If you follow through with sweat testing and gene testing and you see no CF symptoms, you can safely move on with your lives and not have to think about CF again. These newborn screenings are a wonderful thing for getting the jump on a diagnosis and proper treatment for those who do have CF, unfortunately for some people, they have to go through the process to find out their child is perfectly healthy - I'm placing my bets that this is what will happen for you.

I'll post again if I can find some more information for you - again unless your baby is showing CF symptoms that you haven't mentioned, chances are you really are dealing with a false positive or carrier status only (which will not be life threatening for her)

Hang in there and let us know what happens

Alyssa · Oct 5, 2008

No family history is quite common as until two people come together who both are carriers, a child with CF will not be produced. The majority of us here have no family history of CF either, because our siblings or parents didn't partner up with another carrier.
 
 CF happens when a person inherits two CF genes (one from the mother and one from the father) You may have passed a genetic screening for CF genes, but it is likely that you were only tested for about 30 genes. There are 1561 gene mutations that cause CF, so if you passed a screening, it is still possible that you have one CF gene that was not tested for and you husband could also have one of the 1561 CF gene mutations....having said that though, it is still very likely that you are dealing with a false positive or that the marker indicates her having only one gene (carrier status only, not CF)
 
 Please try to not worry just yet (I know a near impossible thing to ask) but it sounds like you need to have some more complete testing before you assume she has CF.
 
 I'm not very well versed in the newborn screening, but there are what they call markers or indicators that one or more CF genes might be present, but the test is not for finding the genes themselves just the indication they might be present and yes, it does give false positives - the screening does not detect actual CF genes
 
 I'll see what other info I can find for you about the newborn screening, but for now I'd say you are better off just waiting for the sweat testing (which carries it own set of problems with giving false negatives, but that's a story for another set of circumstances) If they said she is a low risk positive, I would venture a guess that the markers found something, but if they are calling it low risk I wouldn't get too concerned just yet.
 
 Ask your doctor to explain to you the difference between what they are looking for in the screening verses what they are looking for with a full genetic testing - it is quite different. If you follow through with sweat testing and gene testing and you see no CF symptoms, you can safely move on with your lives and not have to think about CF again. These newborn screenings are a wonderful thing for getting the jump on a diagnosis and proper treatment for those who do have CF, unfortunately for some people, they have to go through the process to find out their child is perfectly healthy - I'm placing my bets that this is what will happen for you.
 
 I'll post again if I can find some more information for you - again unless your baby is showing CF symptoms that you haven't mentioned, chances are you really are dealing with a false positive or carrier status only (which will not be life threatening for her)
 
 Hang in there and let us know what happens

Alyssa · Oct 5, 2008

Here are a couple of quotes I found from cff.org The CFF is the backbone organization that all accredited CF doctors and centers are affiliated with, so their comments are generally well respected.

What does the newborn screening test for CF reveal? Does a positive result mean that a baby has CF?

No, not necessarily. A newborn screening test is not a diagnostic test. In fact, only a fraction of babies with an initial positive CF newborn screening test ultimately are diagnosed with the disease. If an initial screen is positive, further tests are done to rule out or confirm a CF diagnosis.

If CF is genetic, is it usually present in the family history of those who have it? 

Not usually. CF is caused by a recessive gene, which means that a child must inherit two copies of the defective CF gene - one from each parent - to have the disease. Even then, there is only a one in four chance that the child of two carriers will have CF. More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene and most are not aware of a person with CF in their family history.

Alyssa · Oct 5, 2008

Here are a couple of quotes I found from cff.org The CFF is the backbone organization that all accredited CF doctors and centers are affiliated with, so their comments are generally well respected.

What does the newborn screening test for CF reveal? Does a positive result mean that a baby has CF?

No, not necessarily. A newborn screening test is not a diagnostic test. In fact, only a fraction of babies with an initial positive CF newborn screening test ultimately are diagnosed with the disease. If an initial screen is positive, further tests are done to rule out or confirm a CF diagnosis.

If CF is genetic, is it usually present in the family history of those who have it? 

Not usually. CF is caused by a recessive gene, which means that a child must inherit two copies of the defective CF gene - one from each parent - to have the disease. Even then, there is only a one in four chance that the child of two carriers will have CF. More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene and most are not aware of a person with CF in their family history.

Alyssa · Oct 5, 2008

Here are a couple of quotes I found from cff.org The CFF is the backbone organization that all accredited CF doctors and centers are affiliated with, so their comments are generally well respected.

What does the newborn screening test for CF reveal? Does a positive result mean that a baby has CF?

No, not necessarily. A newborn screening test is not a diagnostic test. In fact, only a fraction of babies with an initial positive CF newborn screening test ultimately are diagnosed with the disease. If an initial screen is positive, further tests are done to rule out or confirm a CF diagnosis.

If CF is genetic, is it usually present in the family history of those who have it? 

Not usually. CF is caused by a recessive gene, which means that a child must inherit two copies of the defective CF gene - one from each parent - to have the disease. Even then, there is only a one in four chance that the child of two carriers will have CF. More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene and most are not aware of a person with CF in their family history.

Alyssa · Oct 5, 2008

Here are a couple of quotes I found from cff.org The CFF is the backbone organization that all accredited CF doctors and centers are affiliated with, so their comments are generally well respected.

What does the newborn screening test for CF reveal? Does a positive result mean that a baby has CF?

No, not necessarily. A newborn screening test is not a diagnostic test. In fact, only a fraction of babies with an initial positive CF newborn screening test ultimately are diagnosed with the disease. If an initial screen is positive, further tests are done to rule out or confirm a CF diagnosis.

If CF is genetic, is it usually present in the family history of those who have it? 

Not usually. CF is caused by a recessive gene, which means that a child must inherit two copies of the defective CF gene - one from each parent - to have the disease. Even then, there is only a one in four chance that the child of two carriers will have CF. More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene and most are not aware of a person with CF in their family history.

Alyssa · Oct 5, 2008

Here are a couple of quotes I found from cff.org The CFF is the backbone organization that all accredited CF doctors and centers are affiliated with, so their comments are generally well respected.
 
 What does the newborn screening test for CF reveal? Does a positive result mean that a baby has CF?
 
 No, not necessarily. A newborn screening test is not a diagnostic test. In fact, only a fraction of babies with an initial positive CF newborn screening test ultimately are diagnosed with the disease. If an initial screen is positive, further tests are done to rule out or confirm a CF diagnosis.
 
 If CF is genetic, is it usually present in the family history of those who have it? 
 
 Not usually. CF is caused by a recessive gene, which means that a child must inherit two copies of the defective CF gene - one from each parent - to have the disease. Even then, there is only a one in four chance that the child of two carriers will have CF. More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene and most are not aware of a person with CF in their family history.

holmfamily1992 · Oct 7, 2008

I am very sorry that your first week with your brand new baby has to be like this. Our family went through the very same thing just a few months ago. We had one of our children test negative on a sweat test but when genetically tested she came back postive. Our oldest son was also tested and he came back positive on a sweat test but when he was genetically tested they didnt find any mutation. We are not true believers in the accuacy of the sweat test.

Just remember, if your child ends up being diagnosed you will have a great "family" here on this site...They have helped me so much through our 4 dianosis.

((((hugs))))
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

holmfamily1992 · Oct 7, 2008

I am very sorry that your first week with your brand new baby has to be like this. Our family went through the very same thing just a few months ago. We had one of our children test negative on a sweat test but when genetically tested she came back postive. Our oldest son was also tested and he came back positive on a sweat test but when he was genetically tested they didnt find any mutation. We are not true believers in the accuacy of the sweat test.

Just remember, if your child ends up being diagnosed you will have a great "family" here on this site...They have helped me so much through our 4 dianosis.

((((hugs))))
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

holmfamily1992 · Oct 7, 2008

I am very sorry that your first week with your brand new baby has to be like this. Our family went through the very same thing just a few months ago. We had one of our children test negative on a sweat test but when genetically tested she came back postive. Our oldest son was also tested and he came back positive on a sweat test but when he was genetically tested they didnt find any mutation. We are not true believers in the accuacy of the sweat test.

Just remember, if your child ends up being diagnosed you will have a great "family" here on this site...They have helped me so much through our 4 dianosis.

((((hugs))))
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

holmfamily1992 · Oct 7, 2008

I am very sorry that your first week with your brand new baby has to be like this. Our family went through the very same thing just a few months ago. We had one of our children test negative on a sweat test but when genetically tested she came back postive. Our oldest son was also tested and he came back positive on a sweat test but when he was genetically tested they didnt find any mutation. We are not true believers in the accuacy of the sweat test.

Just remember, if your child ends up being diagnosed you will have a great "family" here on this site...They have helped me so much through our 4 dianosis.

((((hugs))))
Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

holmfamily1992 · Oct 7, 2008

I am very sorry that your first week with your brand new baby has to be like this. Our family went through the very same thing just a few months ago. We had one of our children test negative on a sweat test but when genetically tested she came back postive. Our oldest son was also tested and he came back positive on a sweat test but when he was genetically tested they didnt find any mutation. We are not true believers in the accuacy of the sweat test.
 
 Just remember, if your child ends up being diagnosed you will have a great "family" here on this site...They have helped me so much through our 4 dianosis.
 
 ((((hugs))))
 Tina
 <img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

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