Cf Testing

A

Asexyblond23

New member
I am double D508 so we know that nicolas does not have my cf genes. They tested for that in the newborn screening. Ins agreed to pay for the ambrey test but now they are changing it and we would have to pay $1600 to have the 1600 panel test done.

My husbands thought and question is what makes nicolas more prone to having CF then any other child. We know that he does not have my mutations. Would they show on a screening as a carrier for D508? Im really really worried about testing him I really want to but if we know he does not have CF with D508 then does he really have more of a chance then any other person to have CF? Nick my husband had the regular carrier testing done and he came back negitive as a carrrier.

Im just in a confused state and dont know if getting the test is worth the $1600 right now knowing that he doesnt have my mutations.
 
A

Asexyblond23

New member
I am double D508 so we know that nicolas does not have my cf genes. They tested for that in the newborn screening. Ins agreed to pay for the ambrey test but now they are changing it and we would have to pay $1600 to have the 1600 panel test done.

My husbands thought and question is what makes nicolas more prone to having CF then any other child. We know that he does not have my mutations. Would they show on a screening as a carrier for D508? Im really really worried about testing him I really want to but if we know he does not have CF with D508 then does he really have more of a chance then any other person to have CF? Nick my husband had the regular carrier testing done and he came back negitive as a carrrier.

Im just in a confused state and dont know if getting the test is worth the $1600 right now knowing that he doesnt have my mutations.
 
A

Asexyblond23

New member
I am double D508 so we know that nicolas does not have my cf genes. They tested for that in the newborn screening. Ins agreed to pay for the ambrey test but now they are changing it and we would have to pay $1600 to have the 1600 panel test done.

My husbands thought and question is what makes nicolas more prone to having CF then any other child. We know that he does not have my mutations. Would they show on a screening as a carrier for D508? Im really really worried about testing him I really want to but if we know he does not have CF with D508 then does he really have more of a chance then any other person to have CF? Nick my husband had the regular carrier testing done and he came back negitive as a carrrier.

Im just in a confused state and dont know if getting the test is worth the $1600 right now knowing that he doesnt have my mutations.
 
A

Asexyblond23

New member
I am double D508 so we know that nicolas does not have my cf genes. They tested for that in the newborn screening. Ins agreed to pay for the ambrey test but now they are changing it and we would have to pay $1600 to have the 1600 panel test done.

My husbands thought and question is what makes nicolas more prone to having CF then any other child. We know that he does not have my mutations. Would they show on a screening as a carrier for D508? Im really really worried about testing him I really want to but if we know he does not have CF with D508 then does he really have more of a chance then any other person to have CF? Nick my husband had the regular carrier testing done and he came back negitive as a carrrier.

Im just in a confused state and dont know if getting the test is worth the $1600 right now knowing that he doesnt have my mutations.
 
A

Asexyblond23

New member
I am double D508 so we know that nicolas does not have my cf genes. They tested for that in the newborn screening. Ins agreed to pay for the ambrey test but now they are changing it and we would have to pay $1600 to have the 1600 panel test done.
<br />
<br />My husbands thought and question is what makes nicolas more prone to having CF then any other child. We know that he does not have my mutations. Would they show on a screening as a carrier for D508? Im really really worried about testing him I really want to but if we know he does not have CF with D508 then does he really have more of a chance then any other person to have CF? Nick my husband had the regular carrier testing done and he came back negitive as a carrrier.
<br />
<br />Im just in a confused state and dont know if getting the test is worth the $1600 right now knowing that he doesnt have my mutations.
 
K

KarenEliz

New member
I'm not sure I fully understand what the Dr.'s told you. Nicholas has to have one D508 gene, the one he got from you. One from mom & one from dad. The newborn screen only tests for CF, it will not tell you if he is a carrier. But he has to be a carrier since you have CF. My husband had the 1000+ screen done before we started TTC & it was negative. My boys have shown no signs so both their pediatrician and my CF doc did not see a reason to have them blood tested. My CF doc offered to have them sweat tested when they were a year but because of RSV and H1N1 we didn't want do bring them into a hospital. We may do the sweat teast over the summer, but like I said before they are showing no signs so Im not too concerned. Is something bothering you about Nicholas? Ask your clinic about having a sweat test done if you are concerned. That would be my first step.
 
K

KarenEliz

New member
I'm not sure I fully understand what the Dr.'s told you. Nicholas has to have one D508 gene, the one he got from you. One from mom & one from dad. The newborn screen only tests for CF, it will not tell you if he is a carrier. But he has to be a carrier since you have CF. My husband had the 1000+ screen done before we started TTC & it was negative. My boys have shown no signs so both their pediatrician and my CF doc did not see a reason to have them blood tested. My CF doc offered to have them sweat tested when they were a year but because of RSV and H1N1 we didn't want do bring them into a hospital. We may do the sweat teast over the summer, but like I said before they are showing no signs so Im not too concerned. Is something bothering you about Nicholas? Ask your clinic about having a sweat test done if you are concerned. That would be my first step.
 
K

KarenEliz

New member
I'm not sure I fully understand what the Dr.'s told you. Nicholas has to have one D508 gene, the one he got from you. One from mom & one from dad. The newborn screen only tests for CF, it will not tell you if he is a carrier. But he has to be a carrier since you have CF. My husband had the 1000+ screen done before we started TTC & it was negative. My boys have shown no signs so both their pediatrician and my CF doc did not see a reason to have them blood tested. My CF doc offered to have them sweat tested when they were a year but because of RSV and H1N1 we didn't want do bring them into a hospital. We may do the sweat teast over the summer, but like I said before they are showing no signs so Im not too concerned. Is something bothering you about Nicholas? Ask your clinic about having a sweat test done if you are concerned. That would be my first step.
 
K

KarenEliz

New member
I'm not sure I fully understand what the Dr.'s told you. Nicholas has to have one D508 gene, the one he got from you. One from mom & one from dad. The newborn screen only tests for CF, it will not tell you if he is a carrier. But he has to be a carrier since you have CF. My husband had the 1000+ screen done before we started TTC & it was negative. My boys have shown no signs so both their pediatrician and my CF doc did not see a reason to have them blood tested. My CF doc offered to have them sweat tested when they were a year but because of RSV and H1N1 we didn't want do bring them into a hospital. We may do the sweat teast over the summer, but like I said before they are showing no signs so Im not too concerned. Is something bothering you about Nicholas? Ask your clinic about having a sweat test done if you are concerned. That would be my first step.
 
K

KarenEliz

New member
I'm not sure I fully understand what the Dr.'s told you. Nicholas has to have one D508 gene, the one he got from you. One from mom & one from dad. The newborn screen only tests for CF, it will not tell you if he is a carrier. But he has to be a carrier since you have CF. My husband had the 1000+ screen done before we started TTC & it was negative. My boys have shown no signs so both their pediatrician and my CF doc did not see a reason to have them blood tested. My CF doc offered to have them sweat tested when they were a year but because of RSV and H1N1 we didn't want do bring them into a hospital. We may do the sweat teast over the summer, but like I said before they are showing no signs so Im not too concerned. Is something bothering you about Nicholas? Ask your clinic about having a sweat test done if you are concerned. That would be my first step.
 
R

rubyroselee

New member
Hi Alisha,

If you've already had the regular carrier testing done and it was negative and Nicolas is not showing any symptoms of CF, I would not worry about further testing. I was worried about the same thing when my son was born, but my CF doctor said to not worry about further testing unless the child shows symptoms.

And obviously, Nicolas is a carrier because he did get one DF508 from you. Chances are, that if your husband's first test did not show him to be a carrier, that Nicolas is probably just a carrier. Of course, there's always that chance that your husband has one of the less common mutations, but unless you really want to find out, then it's probably not really necessary. Just my opinion.
 
R

rubyroselee

New member
Hi Alisha,

If you've already had the regular carrier testing done and it was negative and Nicolas is not showing any symptoms of CF, I would not worry about further testing. I was worried about the same thing when my son was born, but my CF doctor said to not worry about further testing unless the child shows symptoms.

And obviously, Nicolas is a carrier because he did get one DF508 from you. Chances are, that if your husband's first test did not show him to be a carrier, that Nicolas is probably just a carrier. Of course, there's always that chance that your husband has one of the less common mutations, but unless you really want to find out, then it's probably not really necessary. Just my opinion.
 
R

rubyroselee

New member
Hi Alisha,

If you've already had the regular carrier testing done and it was negative and Nicolas is not showing any symptoms of CF, I would not worry about further testing. I was worried about the same thing when my son was born, but my CF doctor said to not worry about further testing unless the child shows symptoms.

And obviously, Nicolas is a carrier because he did get one DF508 from you. Chances are, that if your husband's first test did not show him to be a carrier, that Nicolas is probably just a carrier. Of course, there's always that chance that your husband has one of the less common mutations, but unless you really want to find out, then it's probably not really necessary. Just my opinion.
 
R

rubyroselee

New member
Hi Alisha,

If you've already had the regular carrier testing done and it was negative and Nicolas is not showing any symptoms of CF, I would not worry about further testing. I was worried about the same thing when my son was born, but my CF doctor said to not worry about further testing unless the child shows symptoms.

And obviously, Nicolas is a carrier because he did get one DF508 from you. Chances are, that if your husband's first test did not show him to be a carrier, that Nicolas is probably just a carrier. Of course, there's always that chance that your husband has one of the less common mutations, but unless you really want to find out, then it's probably not really necessary. Just my opinion.
 
R

rubyroselee

New member
Hi Alisha,
<br />
<br />If you've already had the regular carrier testing done and it was negative and Nicolas is not showing any symptoms of CF, I would not worry about further testing. I was worried about the same thing when my son was born, but my CF doctor said to not worry about further testing unless the child shows symptoms.
<br />
<br />And obviously, Nicolas is a carrier because he did get one DF508 from you. Chances are, that if your husband's first test did not show him to be a carrier, that Nicolas is probably just a carrier. Of course, there's always that chance that your husband has one of the less common mutations, but unless you really want to find out, then it's probably not really necessary. Just my opinion.
 
A

alluneedislove

Guest
Im really surprised that the newborn screening test didnt show the D508 especially if you have both, that is the most common Cf gene. My Cf doc said when we had my daughter that not to Freak out when the newborn test came back and said she had Cf because even if they are a carrier it is suppose to show up. When we got her test back they said she doesnt have the cf gene. ha thats not possible i have Cf. So we went ahead and had the big genetic panel done. She is a carrier of my way off mutation that they have no info on. So i wouldnt spend the extra money, you already know he is a carrier with one of your D508 genes and if your husband isnt a carrier no worries! Hope that helps
 
A

alluneedislove

Guest
Im really surprised that the newborn screening test didnt show the D508 especially if you have both, that is the most common Cf gene. My Cf doc said when we had my daughter that not to Freak out when the newborn test came back and said she had Cf because even if they are a carrier it is suppose to show up. When we got her test back they said she doesnt have the cf gene. ha thats not possible i have Cf. So we went ahead and had the big genetic panel done. She is a carrier of my way off mutation that they have no info on. So i wouldnt spend the extra money, you already know he is a carrier with one of your D508 genes and if your husband isnt a carrier no worries! Hope that helps
 
A

alluneedislove

Guest
Im really surprised that the newborn screening test didnt show the D508 especially if you have both, that is the most common Cf gene. My Cf doc said when we had my daughter that not to Freak out when the newborn test came back and said she had Cf because even if they are a carrier it is suppose to show up. When we got her test back they said she doesnt have the cf gene. ha thats not possible i have Cf. So we went ahead and had the big genetic panel done. She is a carrier of my way off mutation that they have no info on. So i wouldnt spend the extra money, you already know he is a carrier with one of your D508 genes and if your husband isnt a carrier no worries! Hope that helps
 
A

alluneedislove

Guest
Im really surprised that the newborn screening test didnt show the D508 especially if you have both, that is the most common Cf gene. My Cf doc said when we had my daughter that not to Freak out when the newborn test came back and said she had Cf because even if they are a carrier it is suppose to show up. When we got her test back they said she doesnt have the cf gene. ha thats not possible i have Cf. So we went ahead and had the big genetic panel done. She is a carrier of my way off mutation that they have no info on. So i wouldnt spend the extra money, you already know he is a carrier with one of your D508 genes and if your husband isnt a carrier no worries! Hope that helps
 
A

alluneedislove

Guest
Im really surprised that the newborn screening test didnt show the D508 especially if you have both, that is the most common Cf gene. My Cf doc said when we had my daughter that not to Freak out when the newborn test came back and said she had Cf because even if they are a carrier it is suppose to show up. When we got her test back they said she doesnt have the cf gene. ha thats not possible i have Cf. So we went ahead and had the big genetic panel done. She is a carrier of my way off mutation that they have no info on. So i wouldnt spend the extra money, you already know he is a carrier with one of your D508 genes and if your husband isnt a carrier no worries! Hope that helps
 
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