Please help me, im losing it

M

melissa81

New member
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. <img src="i/expressions/face-icon-small-sad.gif" border="0">

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

Any help would be appreciated. Thanks.
 
M

melissa81

New member
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. <img src="i/expressions/face-icon-small-sad.gif" border="0">

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

Any help would be appreciated. Thanks.
 
M

melissa81

New member
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. <img src="i/expressions/face-icon-small-sad.gif" border="0">

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

Any help would be appreciated. Thanks.
 
M

melissa81

New member
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. <img src="i/expressions/face-icon-small-sad.gif" border="0">

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

Any help would be appreciated. Thanks.
 
M

melissa81

New member
HI. I need some help. I am a new mom with a week old baby.
<br />I got a call the other day that my baby came back positive for a cf gene. Im soo confused and scared now.
<br />
<br />I was tested during my pregnancy and was negative.
<br />My pedi also told me that there is "false positives" on the newborn screening that was done on the baby also.
<br />I have to take her for a sweat test wednesday and im making myself crazy. Im crying, then im not, then i am..
<br />I just need someone to help meunderstand this.
<br />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.
<br />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?
<br />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. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />also, she was two weeks early and they mentioned that can show a "false positive".
<br />
<br />Any help would be appreciated. Thanks.
 
M

Mommafirst

Guest
To have CF you must have two CF genes.

The newborn screen can identify the most common CF gene and even carrier status of this gene can increase the IRT measured in this test to positive level. From my understanding only about one in 10 positives on the newborn screen result in a postitive dx for CF.

That being said, you ask if your child can have CF even if you were negative on your carrier screeening. The answer is yes, because there are over 1500 mutations of CF and the carrier screening only checks for the most common 32. Those 32 do account for a large amount (I don't know the percentage but I know its over 70%) of all cases of CF. However, if your child's father has the more common gene that is causing the newborn screen to be positive and you have a more uncommon gene, it is feasible that your child can have CF.

Does that make any sense?

I know this is a crazy hard time, but hang in there. Get the sweat test and if it is ambiguous, get full genetic testing. Odds are good that you will just fall into that more common situation that your child is a carrier.
 
M

Mommafirst

Guest
To have CF you must have two CF genes.

The newborn screen can identify the most common CF gene and even carrier status of this gene can increase the IRT measured in this test to positive level. From my understanding only about one in 10 positives on the newborn screen result in a postitive dx for CF.

That being said, you ask if your child can have CF even if you were negative on your carrier screeening. The answer is yes, because there are over 1500 mutations of CF and the carrier screening only checks for the most common 32. Those 32 do account for a large amount (I don't know the percentage but I know its over 70%) of all cases of CF. However, if your child's father has the more common gene that is causing the newborn screen to be positive and you have a more uncommon gene, it is feasible that your child can have CF.

Does that make any sense?

I know this is a crazy hard time, but hang in there. Get the sweat test and if it is ambiguous, get full genetic testing. Odds are good that you will just fall into that more common situation that your child is a carrier.
 
M

Mommafirst

Guest
To have CF you must have two CF genes.

The newborn screen can identify the most common CF gene and even carrier status of this gene can increase the IRT measured in this test to positive level. From my understanding only about one in 10 positives on the newborn screen result in a postitive dx for CF.

That being said, you ask if your child can have CF even if you were negative on your carrier screeening. The answer is yes, because there are over 1500 mutations of CF and the carrier screening only checks for the most common 32. Those 32 do account for a large amount (I don't know the percentage but I know its over 70%) of all cases of CF. However, if your child's father has the more common gene that is causing the newborn screen to be positive and you have a more uncommon gene, it is feasible that your child can have CF.

Does that make any sense?

I know this is a crazy hard time, but hang in there. Get the sweat test and if it is ambiguous, get full genetic testing. Odds are good that you will just fall into that more common situation that your child is a carrier.
 
M

Mommafirst

Guest
To have CF you must have two CF genes.

The newborn screen can identify the most common CF gene and even carrier status of this gene can increase the IRT measured in this test to positive level. From my understanding only about one in 10 positives on the newborn screen result in a postitive dx for CF.

That being said, you ask if your child can have CF even if you were negative on your carrier screeening. The answer is yes, because there are over 1500 mutations of CF and the carrier screening only checks for the most common 32. Those 32 do account for a large amount (I don't know the percentage but I know its over 70%) of all cases of CF. However, if your child's father has the more common gene that is causing the newborn screen to be positive and you have a more uncommon gene, it is feasible that your child can have CF.

Does that make any sense?

I know this is a crazy hard time, but hang in there. Get the sweat test and if it is ambiguous, get full genetic testing. Odds are good that you will just fall into that more common situation that your child is a carrier.
 
M

Mommafirst

Guest
To have CF you must have two CF genes.
<br />
<br />The newborn screen can identify the most common CF gene and even carrier status of this gene can increase the IRT measured in this test to positive level. From my understanding only about one in 10 positives on the newborn screen result in a postitive dx for CF.
<br />
<br />That being said, you ask if your child can have CF even if you were negative on your carrier screeening. The answer is yes, because there are over 1500 mutations of CF and the carrier screening only checks for the most common 32. Those 32 do account for a large amount (I don't know the percentage but I know its over 70%) of all cases of CF. However, if your child's father has the more common gene that is causing the newborn screen to be positive and you have a more uncommon gene, it is feasible that your child can have CF.
<br />
<br />Does that make any sense?
<br />
<br />I know this is a crazy hard time, but hang in there. Get the sweat test and if it is ambiguous, get full genetic testing. Odds are good that you will just fall into that more common situation that your child is a carrier.
<br />
<br />
 
G

GriffinsMama

New member
Hi, My son has cf and he's 3 years old. Try to stop and slow down and just LOVE that little sweetie pie that you have there.... I understand this news is completely confusing and hard to absorb but your little one is first a beautiful baby and second a baby with cf. I hope you understand what I mean when I say that. I've been there, although my baby was diagnosed at 2.5 mos. after a lot of confusion and mistakes.<br><br>As for the false positives etc. It does happen. If you were tested during your pregnancy and they found no genes that's good, but not perfect. They only test for a certain amount of the most common cf genes at first... they can do a more extensive test to see if they've missed something.<br><br>If your little sweetie pie was tested and they found a gene, and only one gene, that's good also. There are lots of people out there in the world who, besides being warm, witty, unusually good looking and intelligent, are also cf gene carriers. If they only found one gene they may want to do a sweat test to check her chloride levels which will help determine if she is just a simple gene carrier or in fact does have cf. The higher numbers, over 40 i believe are defined as being cf related but the lines are blurred as to the exact number. If the numbers are higher most likely she will have cf. Then they may choose to do the more comprehensive genetic test to determine which genes she does carry.<br><br>Does that make sense? I'm not a usual poster but really feel for you right now because we all have been in your position in a way. It's a shock and definitely sad at first. But My boy is the light of many peoples lives and he's just so wonderful! CF treatments have come a long way. You will get through this one way or another and of course we'll be sending you positive thoughts and vibes....Please let us know what happens... keep us updated and keep asking questions!xoxoxoxo(((hugs)))
 
G

GriffinsMama

New member
Hi, My son has cf and he's 3 years old. Try to stop and slow down and just LOVE that little sweetie pie that you have there.... I understand this news is completely confusing and hard to absorb but your little one is first a beautiful baby and second a baby with cf. I hope you understand what I mean when I say that. I've been there, although my baby was diagnosed at 2.5 mos. after a lot of confusion and mistakes.<br><br>As for the false positives etc. It does happen. If you were tested during your pregnancy and they found no genes that's good, but not perfect. They only test for a certain amount of the most common cf genes at first... they can do a more extensive test to see if they've missed something.<br><br>If your little sweetie pie was tested and they found a gene, and only one gene, that's good also. There are lots of people out there in the world who, besides being warm, witty, unusually good looking and intelligent, are also cf gene carriers. If they only found one gene they may want to do a sweat test to check her chloride levels which will help determine if she is just a simple gene carrier or in fact does have cf. The higher numbers, over 40 i believe are defined as being cf related but the lines are blurred as to the exact number. If the numbers are higher most likely she will have cf. Then they may choose to do the more comprehensive genetic test to determine which genes she does carry.<br><br>Does that make sense? I'm not a usual poster but really feel for you right now because we all have been in your position in a way. It's a shock and definitely sad at first. But My boy is the light of many peoples lives and he's just so wonderful! CF treatments have come a long way. You will get through this one way or another and of course we'll be sending you positive thoughts and vibes....Please let us know what happens... keep us updated and keep asking questions!xoxoxoxo(((hugs)))
 
G

GriffinsMama

New member
Hi, My son has cf and he's 3 years old. Try to stop and slow down and just LOVE that little sweetie pie that you have there.... I understand this news is completely confusing and hard to absorb but your little one is first a beautiful baby and second a baby with cf. I hope you understand what I mean when I say that. I've been there, although my baby was diagnosed at 2.5 mos. after a lot of confusion and mistakes.<br><br>As for the false positives etc. It does happen. If you were tested during your pregnancy and they found no genes that's good, but not perfect. They only test for a certain amount of the most common cf genes at first... they can do a more extensive test to see if they've missed something.<br><br>If your little sweetie pie was tested and they found a gene, and only one gene, that's good also. There are lots of people out there in the world who, besides being warm, witty, unusually good looking and intelligent, are also cf gene carriers. If they only found one gene they may want to do a sweat test to check her chloride levels which will help determine if she is just a simple gene carrier or in fact does have cf. The higher numbers, over 40 i believe are defined as being cf related but the lines are blurred as to the exact number. If the numbers are higher most likely she will have cf. Then they may choose to do the more comprehensive genetic test to determine which genes she does carry.<br><br>Does that make sense? I'm not a usual poster but really feel for you right now because we all have been in your position in a way. It's a shock and definitely sad at first. But My boy is the light of many peoples lives and he's just so wonderful! CF treatments have come a long way. You will get through this one way or another and of course we'll be sending you positive thoughts and vibes....Please let us know what happens... keep us updated and keep asking questions!xoxoxoxo(((hugs)))
 
G

GriffinsMama

New member
Hi, My son has cf and he's 3 years old. Try to stop and slow down and just LOVE that little sweetie pie that you have there.... I understand this news is completely confusing and hard to absorb but your little one is first a beautiful baby and second a baby with cf. I hope you understand what I mean when I say that. I've been there, although my baby was diagnosed at 2.5 mos. after a lot of confusion and mistakes.<br><br>As for the false positives etc. It does happen. If you were tested during your pregnancy and they found no genes that's good, but not perfect. They only test for a certain amount of the most common cf genes at first... they can do a more extensive test to see if they've missed something.<br><br>If your little sweetie pie was tested and they found a gene, and only one gene, that's good also. There are lots of people out there in the world who, besides being warm, witty, unusually good looking and intelligent, are also cf gene carriers. If they only found one gene they may want to do a sweat test to check her chloride levels which will help determine if she is just a simple gene carrier or in fact does have cf. The higher numbers, over 40 i believe are defined as being cf related but the lines are blurred as to the exact number. If the numbers are higher most likely she will have cf. Then they may choose to do the more comprehensive genetic test to determine which genes she does carry.<br><br>Does that make sense? I'm not a usual poster but really feel for you right now because we all have been in your position in a way. It's a shock and definitely sad at first. But My boy is the light of many peoples lives and he's just so wonderful! CF treatments have come a long way. You will get through this one way or another and of course we'll be sending you positive thoughts and vibes....Please let us know what happens... keep us updated and keep asking questions!xoxoxoxo(((hugs)))
 
G

GriffinsMama

New member
Hi, My son has cf and he's 3 years old. Try to stop and slow down and just LOVE that little sweetie pie that you have there.... I understand this news is completely confusing and hard to absorb but your little one is first a beautiful baby and second a baby with cf. I hope you understand what I mean when I say that. I've been there, although my baby was diagnosed at 2.5 mos. after a lot of confusion and mistakes.<br><br>As for the false positives etc. It does happen. If you were tested during your pregnancy and they found no genes that's good, but not perfect. They only test for a certain amount of the most common cf genes at first... they can do a more extensive test to see if they've missed something.<br><br>If your little sweetie pie was tested and they found a gene, and only one gene, that's good also. There are lots of people out there in the world who, besides being warm, witty, unusually good looking and intelligent, are also cf gene carriers. If they only found one gene they may want to do a sweat test to check her chloride levels which will help determine if she is just a simple gene carrier or in fact does have cf. The higher numbers, over 40 i believe are defined as being cf related but the lines are blurred as to the exact number. If the numbers are higher most likely she will have cf. Then they may choose to do the more comprehensive genetic test to determine which genes she does carry.<br><br>Does that make sense? I'm not a usual poster but really feel for you right now because we all have been in your position in a way. It's a shock and definitely sad at first. But My boy is the light of many peoples lives and he's just so wonderful! CF treatments have come a long way. You will get through this one way or another and of course we'll be sending you positive thoughts and vibes....Please let us know what happens... keep us updated and keep asking questions!xoxoxoxo(((hugs)))
 
M

melissa81

New member
Mommafirst-

did you children that are carriers show ositive fr just one gene on the newborn screen test?

does this definitely mean she is a carrier? or is there a chance she can be trly negatove for both?

i dont know how i am going to make it til wednesday...
 
M

melissa81

New member
Mommafirst-

did you children that are carriers show ositive fr just one gene on the newborn screen test?

does this definitely mean she is a carrier? or is there a chance she can be trly negatove for both?

i dont know how i am going to make it til wednesday...
 
M

melissa81

New member
Mommafirst-

did you children that are carriers show ositive fr just one gene on the newborn screen test?

does this definitely mean she is a carrier? or is there a chance she can be trly negatove for both?

i dont know how i am going to make it til wednesday...
 
M

melissa81

New member
Mommafirst-

did you children that are carriers show ositive fr just one gene on the newborn screen test?

does this definitely mean she is a carrier? or is there a chance she can be trly negatove for both?

i dont know how i am going to make it til wednesday...
 
M

melissa81

New member
Mommafirst-
<br />
<br />did you children that are carriers show ositive fr just one gene on the newborn screen test?
<br />
<br />does this definitely mean she is a carrier? or is there a chance she can be trly negatove for both?
<br />
<br />i dont know how i am going to make it til wednesday...
 
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