My son was diagnosed in utero. You can choose whether or not to have the blood test done for being a carrier, and I chose not to since we had no CF in the family and I didn't know much about it. My son's ultrasounds came back with a bright bowel, so that was the first red flag. I was tested for being a carrier and it came back positive, then my husband was tested and he came back positive. So, then I had an amnio done, and they tested specifically for CF and that came back positive. That's the order in which they did all the testing. Hope this helps.
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Amnio and diagnosis
- Thread starter kimmad
- Start date
My son was diagnosed in utero. You can choose whether or not to have the blood test done for being a carrier, and I chose not to since we had no CF in the family and I didn't know much about it. My son's ultrasounds came back with a bright bowel, so that was the first red flag. I was tested for being a carrier and it came back positive, then my husband was tested and he came back positive. So, then I had an amnio done, and they tested specifically for CF and that came back positive. That's the order in which they did all the testing. Hope this helps.
My son was diagnosed in utero. You can choose whether or not to have the blood test done for being a carrier, and I chose not to since we had no CF in the family and I didn't know much about it. My son's ultrasounds came back with a bright bowel, so that was the first red flag. I was tested for being a carrier and it came back positive, then my husband was tested and he came back positive. So, then I had an amnio done, and they tested specifically for CF and that came back positive. That's the order in which they did all the testing. Hope this helps.
My son was diagnosed in utero. You can choose whether or not to have the blood test done for being a carrier, and I chose not to since we had no CF in the family and I didn't know much about it. My son's ultrasounds came back with a bright bowel, so that was the first red flag. I was tested for being a carrier and it came back positive, then my husband was tested and he came back positive. So, then I had an amnio done, and they tested specifically for CF and that came back positive. That's the order in which they did all the testing. Hope this helps.
My son was diagnosed in utero. You can choose whether or not to have the blood test done for being a carrier, and I chose not to since we had no CF in the family and I didn't know much about it. My son's ultrasounds came back with a bright bowel, so that was the first red flag. I was tested for being a carrier and it came back positive, then my husband was tested and he came back positive. So, then I had an amnio done, and they tested specifically for CF and that came back positive. That's the order in which they did all the testing. Hope this helps.
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Thank you so much for your replies. Unfortunately, it makes me very scared that this could be a real possibility. I know they wouldn't have been looking for CF - like I said, I don't know of anyone in either family with it. We will be definitely getting the sweat test, luckily there is a care center close by, and I'll be demanding the referral.
Thanks again for clearing this up. I'll let you know how testing goes.
Kim
Thanks again for clearing this up. I'll let you know how testing goes.
Kim
Thank you so much for your replies. Unfortunately, it makes me very scared that this could be a real possibility. I know they wouldn't have been looking for CF - like I said, I don't know of anyone in either family with it. We will be definitely getting the sweat test, luckily there is a care center close by, and I'll be demanding the referral.
Thanks again for clearing this up. I'll let you know how testing goes.
Kim
Thanks again for clearing this up. I'll let you know how testing goes.
Kim
Thank you so much for your replies. Unfortunately, it makes me very scared that this could be a real possibility. I know they wouldn't have been looking for CF - like I said, I don't know of anyone in either family with it. We will be definitely getting the sweat test, luckily there is a care center close by, and I'll be demanding the referral.
Thanks again for clearing this up. I'll let you know how testing goes.
Kim
Thanks again for clearing this up. I'll let you know how testing goes.
Kim
Thank you so much for your replies. Unfortunately, it makes me very scared that this could be a real possibility. I know they wouldn't have been looking for CF - like I said, I don't know of anyone in either family with it. We will be definitely getting the sweat test, luckily there is a care center close by, and I'll be demanding the referral.
Thanks again for clearing this up. I'll let you know how testing goes.
Kim
Thanks again for clearing this up. I'll let you know how testing goes.
Kim
Thank you so much for your replies. Unfortunately, it makes me very scared that this could be a real possibility. I know they wouldn't have been looking for CF - like I said, I don't know of anyone in either family with it. We will be definitely getting the sweat test, luckily there is a care center close by, and I'll be demanding the referral.
<br />
<br />Thanks again for clearing this up. I'll let you know how testing goes.
<br />
<br />Kim
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<br />Thanks again for clearing this up. I'll let you know how testing goes.
<br />
<br />Kim
I have mixed feeling about this. I had amnio and found out that Sophie did have CF. Which is great because you find out early but newborn screening comes back within a week now anyway. Knowing the child has Cf for that extra week doesn't make that much difference because you can't do anything about it. You typically start enzymes after a week. The reason is not every child needs enzymes in the begining. Of course it might be different if you expect a bowel obstruction.
I have mixed feeling about this. I had amnio and found out that Sophie did have CF. Which is great because you find out early but newborn screening comes back within a week now anyway. Knowing the child has Cf for that extra week doesn't make that much difference because you can't do anything about it. You typically start enzymes after a week. The reason is not every child needs enzymes in the begining. Of course it might be different if you expect a bowel obstruction.
I have mixed feeling about this. I had amnio and found out that Sophie did have CF. Which is great because you find out early but newborn screening comes back within a week now anyway. Knowing the child has Cf for that extra week doesn't make that much difference because you can't do anything about it. You typically start enzymes after a week. The reason is not every child needs enzymes in the begining. Of course it might be different if you expect a bowel obstruction.
I have mixed feeling about this. I had amnio and found out that Sophie did have CF. Which is great because you find out early but newborn screening comes back within a week now anyway. Knowing the child has Cf for that extra week doesn't make that much difference because you can't do anything about it. You typically start enzymes after a week. The reason is not every child needs enzymes in the begining. Of course it might be different if you expect a bowel obstruction.
I have mixed feeling about this. I had amnio and found out that Sophie did have CF. Which is great because you find out early but newborn screening comes back within a week now anyway. Knowing the child has Cf for that extra week doesn't make that much difference because you can't do anything about it. You typically start enzymes after a week. The reason is not every child needs enzymes in the begining. Of course it might be different if you expect a bowel obstruction.
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NanaOf8GirlsAndCounting
Guest
My granddaughter was diagnoised at 23 weeks by amino, the ultrasound showed a large spot on her bowel and they decided to do the test. I agree with everyone here that they have to actually have to test for it. I am glad that we knew ahead of time. It gave us time to adjust to the fact that she would have to possibly have surgery and a hospital stay. Which she did evenutally have to have a long 6 months stay. It was a shock since no one has CF in our family but since that time we have found out that the gene is carried from my husbands family and another cousin has been tested. Sorry don't know if there is any false negatives in the amino tests.....
N
NanaOf8GirlsAndCounting
Guest
My granddaughter was diagnoised at 23 weeks by amino, the ultrasound showed a large spot on her bowel and they decided to do the test. I agree with everyone here that they have to actually have to test for it. I am glad that we knew ahead of time. It gave us time to adjust to the fact that she would have to possibly have surgery and a hospital stay. Which she did evenutally have to have a long 6 months stay. It was a shock since no one has CF in our family but since that time we have found out that the gene is carried from my husbands family and another cousin has been tested. Sorry don't know if there is any false negatives in the amino tests.....
N
NanaOf8GirlsAndCounting
Guest
My granddaughter was diagnoised at 23 weeks by amino, the ultrasound showed a large spot on her bowel and they decided to do the test. I agree with everyone here that they have to actually have to test for it. I am glad that we knew ahead of time. It gave us time to adjust to the fact that she would have to possibly have surgery and a hospital stay. Which she did evenutally have to have a long 6 months stay. It was a shock since no one has CF in our family but since that time we have found out that the gene is carried from my husbands family and another cousin has been tested. Sorry don't know if there is any false negatives in the amino tests.....
N
NanaOf8GirlsAndCounting
Guest
My granddaughter was diagnoised at 23 weeks by amino, the ultrasound showed a large spot on her bowel and they decided to do the test. I agree with everyone here that they have to actually have to test for it. I am glad that we knew ahead of time. It gave us time to adjust to the fact that she would have to possibly have surgery and a hospital stay. Which she did evenutally have to have a long 6 months stay. It was a shock since no one has CF in our family but since that time we have found out that the gene is carried from my husbands family and another cousin has been tested. Sorry don't know if there is any false negatives in the amino tests.....
N
NanaOf8GirlsAndCounting
Guest
My granddaughter was diagnoised at 23 weeks by amino, the ultrasound showed a large spot on her bowel and they decided to do the test. I agree with everyone here that they have to actually have to test for it. I am glad that we knew ahead of time. It gave us time to adjust to the fact that she would have to possibly have surgery and a hospital stay. Which she did evenutally have to have a long 6 months stay. It was a shock since no one has CF in our family but since that time we have found out that the gene is carried from my husbands family and another cousin has been tested. Sorry don't know if there is any false negatives in the amino tests.....