two people with CF??

B

bobbiex3

New member
quick question.
my niece, 3 weeks old, just found out her test came back positive for CF. not the sweat test, so they are doin the same test again. before they do the sweat test. if it comes back positive then they'll do the sweat test. they say the test they gave her 95% of the time comes back with a false positive, so hopefully thats what happend. but if not, how will i ever be able to be around her? i've never been in this situation!
 
B

bobbiex3

New member
quick question.
my niece, 3 weeks old, just found out her test came back positive for CF. not the sweat test, so they are doin the same test again. before they do the sweat test. if it comes back positive then they'll do the sweat test. they say the test they gave her 95% of the time comes back with a false positive, so hopefully thats what happend. but if not, how will i ever be able to be around her? i've never been in this situation!
 
B

bobbiex3

New member
quick question.
my niece, 3 weeks old, just found out her test came back positive for CF. not the sweat test, so they are doin the same test again. before they do the sweat test. if it comes back positive then they'll do the sweat test. they say the test they gave her 95% of the time comes back with a false positive, so hopefully thats what happend. but if not, how will i ever be able to be around her? i've never been in this situation!
 
B

bobbiex3

New member
quick question.
my niece, 3 weeks old, just found out her test came back positive for CF. not the sweat test, so they are doin the same test again. before they do the sweat test. if it comes back positive then they'll do the sweat test. they say the test they gave her 95% of the time comes back with a false positive, so hopefully thats what happend. but if not, how will i ever be able to be around her? i've never been in this situation!
 
B

bobbiex3

New member
quick question.
<br />my niece, 3 weeks old, just found out her test came back positive for CF. not the sweat test, so they are doin the same test again. before they do the sweat test. if it comes back positive then they'll do the sweat test. they say the test they gave her 95% of the time comes back with a false positive, so hopefully thats what happend. but if not, how will i ever be able to be around her? i've never been in this situation!
 
J

JazzysMom

New member
I am a bit confused as to what testing was done. If you are referring to newborn screening, that is just what it is a screening which does require additional testing.

If they are doing FULL GENETIC testing then the sweat test isnt really needed, but many doctors still like to do it as another method of confirmation.

As to you being around her.....that is something you will have to discuss with the family. When its siblings and there isnt really a choice its different, but often other family members choose to avoid each other or follow a very strict 3 foot rule.

If you are culturing ANY bacteria then its very important because hoopefully the baby wont culture anything for a long time & you would feel awful if the baby cultured the bacteria you have.

Let us know what happens with the testing!!!
 
J

JazzysMom

New member
I am a bit confused as to what testing was done. If you are referring to newborn screening, that is just what it is a screening which does require additional testing.

If they are doing FULL GENETIC testing then the sweat test isnt really needed, but many doctors still like to do it as another method of confirmation.

As to you being around her.....that is something you will have to discuss with the family. When its siblings and there isnt really a choice its different, but often other family members choose to avoid each other or follow a very strict 3 foot rule.

If you are culturing ANY bacteria then its very important because hoopefully the baby wont culture anything for a long time & you would feel awful if the baby cultured the bacteria you have.

Let us know what happens with the testing!!!
 
J

JazzysMom

New member
I am a bit confused as to what testing was done. If you are referring to newborn screening, that is just what it is a screening which does require additional testing.

If they are doing FULL GENETIC testing then the sweat test isnt really needed, but many doctors still like to do it as another method of confirmation.

As to you being around her.....that is something you will have to discuss with the family. When its siblings and there isnt really a choice its different, but often other family members choose to avoid each other or follow a very strict 3 foot rule.

If you are culturing ANY bacteria then its very important because hoopefully the baby wont culture anything for a long time & you would feel awful if the baby cultured the bacteria you have.

Let us know what happens with the testing!!!
 
J

JazzysMom

New member
I am a bit confused as to what testing was done. If you are referring to newborn screening, that is just what it is a screening which does require additional testing.

If they are doing FULL GENETIC testing then the sweat test isnt really needed, but many doctors still like to do it as another method of confirmation.

As to you being around her.....that is something you will have to discuss with the family. When its siblings and there isnt really a choice its different, but often other family members choose to avoid each other or follow a very strict 3 foot rule.

If you are culturing ANY bacteria then its very important because hoopefully the baby wont culture anything for a long time & you would feel awful if the baby cultured the bacteria you have.

Let us know what happens with the testing!!!
 
J

JazzysMom

New member
I am a bit confused as to what testing was done. If you are referring to newborn screening, that is just what it is a screening which does require additional testing.
<br />
<br />If they are doing FULL GENETIC testing then the sweat test isnt really needed, but many doctors still like to do it as another method of confirmation.
<br />
<br />As to you being around her.....that is something you will have to discuss with the family. When its siblings and there isnt really a choice its different, but often other family members choose to avoid each other or follow a very strict 3 foot rule.
<br />
<br />If you are culturing ANY bacteria then its very important because hoopefully the baby wont culture anything for a long time & you would feel awful if the baby cultured the bacteria you have.
<br />
<br />Let us know what happens with the testing!!!
 
R

Ratatosk

Administrator
Staff member
I believe in our state the newborn screening tests for certain markers and then there is follow-up with sweat testing. I'm assuming they do genetic testing afterwards...

As for being able to be around her if she does have CF, I guess it would depend upon what you're culturing and how the parents feel about it. As a parent of a cfer, we've discussed this because there are a couple relatives on DH's side who have had some health issues/infections and we rather err on the side of caution. These are not real CLOSE relatives though.

I'd want to have enough info to make a decision, but frankly, if I were your niece's parent, I'd be concerned about her health, but also with how this was going to affect the family dynamic -- holidays, visits, other relatives... And how it would affect you emotionally should I have to make a decision to stay away during certain family events... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I believe in our state the newborn screening tests for certain markers and then there is follow-up with sweat testing. I'm assuming they do genetic testing afterwards...

As for being able to be around her if she does have CF, I guess it would depend upon what you're culturing and how the parents feel about it. As a parent of a cfer, we've discussed this because there are a couple relatives on DH's side who have had some health issues/infections and we rather err on the side of caution. These are not real CLOSE relatives though.

I'd want to have enough info to make a decision, but frankly, if I were your niece's parent, I'd be concerned about her health, but also with how this was going to affect the family dynamic -- holidays, visits, other relatives... And how it would affect you emotionally should I have to make a decision to stay away during certain family events... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I believe in our state the newborn screening tests for certain markers and then there is follow-up with sweat testing. I'm assuming they do genetic testing afterwards...

As for being able to be around her if she does have CF, I guess it would depend upon what you're culturing and how the parents feel about it. As a parent of a cfer, we've discussed this because there are a couple relatives on DH's side who have had some health issues/infections and we rather err on the side of caution. These are not real CLOSE relatives though.

I'd want to have enough info to make a decision, but frankly, if I were your niece's parent, I'd be concerned about her health, but also with how this was going to affect the family dynamic -- holidays, visits, other relatives... And how it would affect you emotionally should I have to make a decision to stay away during certain family events... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I believe in our state the newborn screening tests for certain markers and then there is follow-up with sweat testing. I'm assuming they do genetic testing afterwards...

As for being able to be around her if she does have CF, I guess it would depend upon what you're culturing and how the parents feel about it. As a parent of a cfer, we've discussed this because there are a couple relatives on DH's side who have had some health issues/infections and we rather err on the side of caution. These are not real CLOSE relatives though.

I'd want to have enough info to make a decision, but frankly, if I were your niece's parent, I'd be concerned about her health, but also with how this was going to affect the family dynamic -- holidays, visits, other relatives... And how it would affect you emotionally should I have to make a decision to stay away during certain family events... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I believe in our state the newborn screening tests for certain markers and then there is follow-up with sweat testing. I'm assuming they do genetic testing afterwards...
<br />
<br />As for being able to be around her if she does have CF, I guess it would depend upon what you're culturing and how the parents feel about it. As a parent of a cfer, we've discussed this because there are a couple relatives on DH's side who have had some health issues/infections and we rather err on the side of caution. These are not real CLOSE relatives though.
<br />
<br />I'd want to have enough info to make a decision, but frankly, if I were your niece's parent, I'd be concerned about her health, but also with how this was going to affect the family dynamic -- holidays, visits, other relatives... And how it would affect you emotionally should I have to make a decision to stay away during certain family events... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
B

bobbiex3

New member
thank you. I think the test they did was the newborn screening. so they are doing it again, and if its positive they're doin the sweat test. im not sure why they didnt just do the sweat test. idk, hopefully she doesnt have it, that will break my heart to not be able to hold her or be close to her anymore. shes my only niece, and shes by my step sister, i dont have any blood brothers and sisters, so i never thought id have any nieces or nephews. of course if she does have it, i wouldnt put her health at risk, her parents are young and as of right now dont know much about CF. i've been stayin away from her, until the test comes back, excpesially since im sick right now =[
 
B

bobbiex3

New member
thank you. I think the test they did was the newborn screening. so they are doing it again, and if its positive they're doin the sweat test. im not sure why they didnt just do the sweat test. idk, hopefully she doesnt have it, that will break my heart to not be able to hold her or be close to her anymore. shes my only niece, and shes by my step sister, i dont have any blood brothers and sisters, so i never thought id have any nieces or nephews. of course if she does have it, i wouldnt put her health at risk, her parents are young and as of right now dont know much about CF. i've been stayin away from her, until the test comes back, excpesially since im sick right now =[
 
B

bobbiex3

New member
thank you. I think the test they did was the newborn screening. so they are doing it again, and if its positive they're doin the sweat test. im not sure why they didnt just do the sweat test. idk, hopefully she doesnt have it, that will break my heart to not be able to hold her or be close to her anymore. shes my only niece, and shes by my step sister, i dont have any blood brothers and sisters, so i never thought id have any nieces or nephews. of course if she does have it, i wouldnt put her health at risk, her parents are young and as of right now dont know much about CF. i've been stayin away from her, until the test comes back, excpesially since im sick right now =[
 
B

bobbiex3

New member
thank you. I think the test they did was the newborn screening. so they are doing it again, and if its positive they're doin the sweat test. im not sure why they didnt just do the sweat test. idk, hopefully she doesnt have it, that will break my heart to not be able to hold her or be close to her anymore. shes my only niece, and shes by my step sister, i dont have any blood brothers and sisters, so i never thought id have any nieces or nephews. of course if she does have it, i wouldnt put her health at risk, her parents are young and as of right now dont know much about CF. i've been stayin away from her, until the test comes back, excpesially since im sick right now =[
 
B

bobbiex3

New member
thank you. I think the test they did was the newborn screening. so they are doing it again, and if its positive they're doin the sweat test. im not sure why they didnt just do the sweat test. idk, hopefully she doesnt have it, that will break my heart to not be able to hold her or be close to her anymore. shes my only niece, and shes by my step sister, i dont have any blood brothers and sisters, so i never thought id have any nieces or nephews. of course if she does have it, i wouldnt put her health at risk, her parents are young and as of right now dont know much about CF. i've been stayin away from her, until the test comes back, excpesially since im sick right now =[
 
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