question about testing

J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>silverbliss</b></i>

Ok I spoke w/ the nurse they DID do the wrong test. Should have taken simple blood work :::rolls eyes::

"The lab tech who did the sweat test said she'd never done one on an adult" so that sent up a red flag then..

*Jazzy* this is just my obgyn this is not a CF Center.

What my blood work showed and I asked for clarification on this. Was that the BABY showed a gene for CF, and it wasn't in me so I'm NOT a "carrier". I'm 31 yrs old and knew I didn't have actual CF myself.

I also have 2 other children from a previous marriage w/ no cf and I was never told I was a carrier in those pregnancy's.

So where we stand now is they need BLOOD WORK on the father to see if he in fact carries the gene. Which means another week of waiting, on the count of someones mistake.

But wouldn't both parents need to carry the CF gene in order to have CF? So if they are telling me I don't have a gene why would they be concerned with testing my husband? Are there other risk or other ways to pass it to the unborn baby that I might be missing?

thx a bunch for your help

Kerrie</end quote>

This makes more sense! Phew!
First question is how do you know that the gene they detected with the baby is not one that you carry? Were you tested for being a carrier? If so do you know if the extended panel was done or just the basic which only covers 32 of the known CF mutations?
You are correct in the fact that for a child to have a chance of having CF itself that both parents need to be carriers & then there is a 25% chance of the baby having CF, 50% chance of the baby being a carrier, but not having CF & 25% of neither.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>silverbliss</b></i>

Ok I spoke w/ the nurse they DID do the wrong test. Should have taken simple blood work :::rolls eyes::

"The lab tech who did the sweat test said she'd never done one on an adult" so that sent up a red flag then..

*Jazzy* this is just my obgyn this is not a CF Center.

What my blood work showed and I asked for clarification on this. Was that the BABY showed a gene for CF, and it wasn't in me so I'm NOT a "carrier". I'm 31 yrs old and knew I didn't have actual CF myself.

I also have 2 other children from a previous marriage w/ no cf and I was never told I was a carrier in those pregnancy's.

So where we stand now is they need BLOOD WORK on the father to see if he in fact carries the gene. Which means another week of waiting, on the count of someones mistake.

But wouldn't both parents need to carry the CF gene in order to have CF? So if they are telling me I don't have a gene why would they be concerned with testing my husband? Are there other risk or other ways to pass it to the unborn baby that I might be missing?

thx a bunch for your help

Kerrie</end quote>

This makes more sense! Phew!
First question is how do you know that the gene they detected with the baby is not one that you carry? Were you tested for being a carrier? If so do you know if the extended panel was done or just the basic which only covers 32 of the known CF mutations?
You are correct in the fact that for a child to have a chance of having CF itself that both parents need to be carriers & then there is a 25% chance of the baby having CF, 50% chance of the baby being a carrier, but not having CF & 25% of neither.
 
S

silverbliss

Guest
How do I know that the gene was in the baby? Well hmm I myself Don't ... All I know is what they tell me. When I called back for clarification thats what I was told.


As far as the basic or extended testing I am pretty sure they didn't do anything extended. All they did on me was the "prenatal screening" which was nothing more than blood work on my end...
 
S

silverbliss

Guest
How do I know that the gene was in the baby? Well hmm I myself Don't ... All I know is what they tell me. When I called back for clarification thats what I was told.


As far as the basic or extended testing I am pretty sure they didn't do anything extended. All they did on me was the "prenatal screening" which was nothing more than blood work on my end...
 
S

silverbliss

Guest
How do I know that the gene was in the baby? Well hmm I myself Don't ... All I know is what they tell me. When I called back for clarification thats what I was told.


As far as the basic or extended testing I am pretty sure they didn't do anything extended. All they did on me was the "prenatal screening" which was nothing more than blood work on my end...
 
S

silverbliss

Guest
How do I know that the gene was in the baby? Well hmm I myself Don't ... All I know is what they tell me. When I called back for clarification thats what I was told.


As far as the basic or extended testing I am pretty sure they didn't do anything extended. All they did on me was the "prenatal screening" which was nothing more than blood work on my end...
 
S

silverbliss

Guest
How do I know that the gene was in the baby? Well hmm I myself Don't ... All I know is what they tell me. When I called back for clarification thats what I was told.


As far as the basic or extended testing I am pretty sure they didn't do anything extended. All they did on me was the "prenatal screening" which was nothing more than blood work on my end...
 
S

silverbliss

Guest
How do I know that the gene was in the baby? Well hmm I myself Don't ... All I know is what they tell me. When I called back for clarification thats what I was told.


As far as the basic or extended testing I am pretty sure they didn't do anything extended. All they did on me was the "prenatal screening" which was nothing more than blood work on my end...
 
R

Rebjane

Super Moderator
I find this a little confusing as well but I'll add my 2 cents since I've been through the whole prenatal genetic testing when i was prego with my daughter.


In order for a child to have CF, both parents need to be carriers, meaning they carry one CF mutation... not all CF mutations have been identified, in fact there are over 1000 different mutations, now that alot of OBGYN offer testing with prenatal visits more and more people are finding out they carry the CF mutation. If you have one CF mutation, you do not have CF, you are just a carrier.


I found it helpful to talk with a "genetic counselor" who can help you understand all the testing and bloodwork and information about mutations. It is not unusual for the office staff to not have a clue about genetic testing. Then they give you misinformation which makes everything so much more stressful.


From my experience, the first step it to get the bloodwork from yourself and your husband to see if you are carriers for the CF mutation and then go from there.

I'ld be happy to provide more information in regard to prenatal diagnosis of a CF baby if you'ld like. I don't want to overwhelm you. Take care.
 
R

Rebjane

Super Moderator
I find this a little confusing as well but I'll add my 2 cents since I've been through the whole prenatal genetic testing when i was prego with my daughter.


In order for a child to have CF, both parents need to be carriers, meaning they carry one CF mutation... not all CF mutations have been identified, in fact there are over 1000 different mutations, now that alot of OBGYN offer testing with prenatal visits more and more people are finding out they carry the CF mutation. If you have one CF mutation, you do not have CF, you are just a carrier.


I found it helpful to talk with a "genetic counselor" who can help you understand all the testing and bloodwork and information about mutations. It is not unusual for the office staff to not have a clue about genetic testing. Then they give you misinformation which makes everything so much more stressful.


From my experience, the first step it to get the bloodwork from yourself and your husband to see if you are carriers for the CF mutation and then go from there.

I'ld be happy to provide more information in regard to prenatal diagnosis of a CF baby if you'ld like. I don't want to overwhelm you. Take care.
 
R

Rebjane

Super Moderator
I find this a little confusing as well but I'll add my 2 cents since I've been through the whole prenatal genetic testing when i was prego with my daughter.


In order for a child to have CF, both parents need to be carriers, meaning they carry one CF mutation... not all CF mutations have been identified, in fact there are over 1000 different mutations, now that alot of OBGYN offer testing with prenatal visits more and more people are finding out they carry the CF mutation. If you have one CF mutation, you do not have CF, you are just a carrier.


I found it helpful to talk with a "genetic counselor" who can help you understand all the testing and bloodwork and information about mutations. It is not unusual for the office staff to not have a clue about genetic testing. Then they give you misinformation which makes everything so much more stressful.


From my experience, the first step it to get the bloodwork from yourself and your husband to see if you are carriers for the CF mutation and then go from there.

I'ld be happy to provide more information in regard to prenatal diagnosis of a CF baby if you'ld like. I don't want to overwhelm you. Take care.
 
R

Rebjane

Super Moderator
I find this a little confusing as well but I'll add my 2 cents since I've been through the whole prenatal genetic testing when i was prego with my daughter.


In order for a child to have CF, both parents need to be carriers, meaning they carry one CF mutation... not all CF mutations have been identified, in fact there are over 1000 different mutations, now that alot of OBGYN offer testing with prenatal visits more and more people are finding out they carry the CF mutation. If you have one CF mutation, you do not have CF, you are just a carrier.


I found it helpful to talk with a "genetic counselor" who can help you understand all the testing and bloodwork and information about mutations. It is not unusual for the office staff to not have a clue about genetic testing. Then they give you misinformation which makes everything so much more stressful.


From my experience, the first step it to get the bloodwork from yourself and your husband to see if you are carriers for the CF mutation and then go from there.

I'ld be happy to provide more information in regard to prenatal diagnosis of a CF baby if you'ld like. I don't want to overwhelm you. Take care.
 
R

Rebjane

Super Moderator
I find this a little confusing as well but I'll add my 2 cents since I've been through the whole prenatal genetic testing when i was prego with my daughter.


In order for a child to have CF, both parents need to be carriers, meaning they carry one CF mutation... not all CF mutations have been identified, in fact there are over 1000 different mutations, now that alot of OBGYN offer testing with prenatal visits more and more people are finding out they carry the CF mutation. If you have one CF mutation, you do not have CF, you are just a carrier.


I found it helpful to talk with a "genetic counselor" who can help you understand all the testing and bloodwork and information about mutations. It is not unusual for the office staff to not have a clue about genetic testing. Then they give you misinformation which makes everything so much more stressful.


From my experience, the first step it to get the bloodwork from yourself and your husband to see if you are carriers for the CF mutation and then go from there.

I'ld be happy to provide more information in regard to prenatal diagnosis of a CF baby if you'ld like. I don't want to overwhelm you. Take care.
 
R

Rebjane

Super Moderator
I find this a little confusing as well but I'll add my 2 cents since I've been through the whole prenatal genetic testing when i was prego with my daughter.


In order for a child to have CF, both parents need to be carriers, meaning they carry one CF mutation... not all CF mutations have been identified, in fact there are over 1000 different mutations, now that alot of OBGYN offer testing with prenatal visits more and more people are finding out they carry the CF mutation. If you have one CF mutation, you do not have CF, you are just a carrier.


I found it helpful to talk with a "genetic counselor" who can help you understand all the testing and bloodwork and information about mutations. It is not unusual for the office staff to not have a clue about genetic testing. Then they give you misinformation which makes everything so much more stressful.


From my experience, the first step it to get the bloodwork from yourself and your husband to see if you are carriers for the CF mutation and then go from there.

I'ld be happy to provide more information in regard to prenatal diagnosis of a CF baby if you'ld like. I don't want to overwhelm you. Take care.
 
S

silverbliss

Guest
As have I found this very confusing from the beginning. I spoke to the nurse for a second time this afternoon and she said YES the gene was in the baby and NO they didn't test me as a possible carrier "as of yet". They want to test the father b/c they said usually the father is the carrier and if he's positive they will test me as a carrier...

So I'll just wait and see what's said next I am about stressed out with going back and forth gaining clarification on what the heck is going on.
 
S

silverbliss

Guest
As have I found this very confusing from the beginning. I spoke to the nurse for a second time this afternoon and she said YES the gene was in the baby and NO they didn't test me as a possible carrier "as of yet". They want to test the father b/c they said usually the father is the carrier and if he's positive they will test me as a carrier...

So I'll just wait and see what's said next I am about stressed out with going back and forth gaining clarification on what the heck is going on.
 
S

silverbliss

Guest
As have I found this very confusing from the beginning. I spoke to the nurse for a second time this afternoon and she said YES the gene was in the baby and NO they didn't test me as a possible carrier "as of yet". They want to test the father b/c they said usually the father is the carrier and if he's positive they will test me as a carrier...

So I'll just wait and see what's said next I am about stressed out with going back and forth gaining clarification on what the heck is going on.
 
S

silverbliss

Guest
As have I found this very confusing from the beginning. I spoke to the nurse for a second time this afternoon and she said YES the gene was in the baby and NO they didn't test me as a possible carrier "as of yet". They want to test the father b/c they said usually the father is the carrier and if he's positive they will test me as a carrier...

So I'll just wait and see what's said next I am about stressed out with going back and forth gaining clarification on what the heck is going on.
 
S

silverbliss

Guest
As have I found this very confusing from the beginning. I spoke to the nurse for a second time this afternoon and she said YES the gene was in the baby and NO they didn't test me as a possible carrier "as of yet". They want to test the father b/c they said usually the father is the carrier and if he's positive they will test me as a carrier...

So I'll just wait and see what's said next I am about stressed out with going back and forth gaining clarification on what the heck is going on.
 
S

silverbliss

Guest
As have I found this very confusing from the beginning. I spoke to the nurse for a second time this afternoon and she said YES the gene was in the baby and NO they didn't test me as a possible carrier "as of yet". They want to test the father b/c they said usually the father is the carrier and if he's positive they will test me as a carrier...

So I'll just wait and see what's said next I am about stressed out with going back and forth gaining clarification on what the heck is going on.
 
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