New mom and I am scared

NoExcuses

New member
You said you don't know if he has CF or not.... if you don't know, then you get a genetic test.

Genetic testing isn't ONLY done when you want to know which CF genes are responsible. Genetic testing is done as a DIAGNOSTIC tool as well.

And it sounds like you're looking for a diagnosis... am I wrong???????????
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy</end quote></div>

Why is it obvious that you and his father carry the gene? Did you both get tested? EVEN if you both are carriers there is a 25% chance of him having CF not 100% so yes the genetic testing is still beneficial to diagnose him with the sweat test.
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy</end quote></div>

Why is it obvious that you and his father carry the gene? Did you both get tested? EVEN if you both are carriers there is a 25% chance of him having CF not 100% so yes the genetic testing is still beneficial to diagnose him with the sweat test.
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy</end quote></div>

Why is it obvious that you and his father carry the gene? Did you both get tested? EVEN if you both are carriers there is a 25% chance of him having CF not 100% so yes the genetic testing is still beneficial to diagnose him with the sweat test.
 

Hughett

New member
I have to day that I agree with sakasuka. A Genetic test will give you a firm diagnosis if he has it, and it will give you the genes. That is some good information you will need if your child has it. If i remember right you cant do a sweat test for X Months old. I feel for you though. It was only 7.5 months ago me and my wife were in the same situation with our first baby, minus the pneumonia and extra fluid. We had our little guy and he was on oxygen for a bit, didn't have his first poop for over a week when we had to take him to the NICU(mad at nurses for letting him out of the hospital in the first place with that knowledge), had jaundice really bad, and was throwing up after every meal and the color and smell was getting worse and worse (due to the not pooping). Yeah, the first couple of months are some of the worst because they freak us parents out soooo much. I hope everything calms down with the baby. Hang in there. Post in the Adults Section of this site if you have any questions you need answered. It seems like most of the people on here post there.
 

Hughett

New member
I have to day that I agree with sakasuka. A Genetic test will give you a firm diagnosis if he has it, and it will give you the genes. That is some good information you will need if your child has it. If i remember right you cant do a sweat test for X Months old. I feel for you though. It was only 7.5 months ago me and my wife were in the same situation with our first baby, minus the pneumonia and extra fluid. We had our little guy and he was on oxygen for a bit, didn't have his first poop for over a week when we had to take him to the NICU(mad at nurses for letting him out of the hospital in the first place with that knowledge), had jaundice really bad, and was throwing up after every meal and the color and smell was getting worse and worse (due to the not pooping). Yeah, the first couple of months are some of the worst because they freak us parents out soooo much. I hope everything calms down with the baby. Hang in there. Post in the Adults Section of this site if you have any questions you need answered. It seems like most of the people on here post there.
 

Hughett

New member
I have to day that I agree with sakasuka. A Genetic test will give you a firm diagnosis if he has it, and it will give you the genes. That is some good information you will need if your child has it. If i remember right you cant do a sweat test for X Months old. I feel for you though. It was only 7.5 months ago me and my wife were in the same situation with our first baby, minus the pneumonia and extra fluid. We had our little guy and he was on oxygen for a bit, didn't have his first poop for over a week when we had to take him to the NICU(mad at nurses for letting him out of the hospital in the first place with that knowledge), had jaundice really bad, and was throwing up after every meal and the color and smell was getting worse and worse (due to the not pooping). Yeah, the first couple of months are some of the worst because they freak us parents out soooo much. I hope everything calms down with the baby. Hang in there. Post in the Adults Section of this site if you have any questions you need answered. It seems like most of the people on here post there.
 

Foody

New member
The genetic test is for your son not for you. In infants is is often very difficult to get enough sweat for the sweat test so it is recommended that you go with the guthrey panel or ambry genetic test immediately if CF is suspected in the infant. They prick the foot and collect the sample (we had Guthrey not sure if Ambry is the same procedure)....2 weeks later you will have the results. It tests for over 1000 mutations and it more reliable than sweat testing. You can continue to try the sweat tests for further clarification, but it can be a frustrating and can waste precious time (in my experience).

You have been through alot with the pregancy and now this uncertainty surrounding his health. It is very hard to wait and even harder to have to advocate when you are in a very tender place. You must though and we are here for you. Going undiagnosed is worse than knowing especially if he needs enzyme therapy. It may not be CF at all but it needs to be ruled out on a genetic level.

Warmly,
 

Foody

New member
The genetic test is for your son not for you. In infants is is often very difficult to get enough sweat for the sweat test so it is recommended that you go with the guthrey panel or ambry genetic test immediately if CF is suspected in the infant. They prick the foot and collect the sample (we had Guthrey not sure if Ambry is the same procedure)....2 weeks later you will have the results. It tests for over 1000 mutations and it more reliable than sweat testing. You can continue to try the sweat tests for further clarification, but it can be a frustrating and can waste precious time (in my experience).

You have been through alot with the pregancy and now this uncertainty surrounding his health. It is very hard to wait and even harder to have to advocate when you are in a very tender place. You must though and we are here for you. Going undiagnosed is worse than knowing especially if he needs enzyme therapy. It may not be CF at all but it needs to be ruled out on a genetic level.

Warmly,
 

Foody

New member
The genetic test is for your son not for you. In infants is is often very difficult to get enough sweat for the sweat test so it is recommended that you go with the guthrey panel or ambry genetic test immediately if CF is suspected in the infant. They prick the foot and collect the sample (we had Guthrey not sure if Ambry is the same procedure)....2 weeks later you will have the results. It tests for over 1000 mutations and it more reliable than sweat testing. You can continue to try the sweat tests for further clarification, but it can be a frustrating and can waste precious time (in my experience).

You have been through alot with the pregancy and now this uncertainty surrounding his health. It is very hard to wait and even harder to have to advocate when you are in a very tender place. You must though and we are here for you. Going undiagnosed is worse than knowing especially if he needs enzyme therapy. It may not be CF at all but it needs to be ruled out on a genetic level.

Warmly,
 
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