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L
lemonstolemonade
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L
lemonstolemonade
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L
lemonstolemonade
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StevenKeiles
New member
Dear Lemons,
When the parents mutations are known and testing is done on an amnio for those specific mutations, the testing is very accurate. There is no test that is 100% accurate, but this is going to be pretty close.
As you probably know, not all CF kids are affected equally, even with the same mutations. I don't know which mutations we are talking about in your case, but in many cases symptoms may not be evident for immediately after birth and some times for months.
If it would make you feel better you can have the baby tested again for just those known mutations. However, I do not feel it is necessary.
Best of luck,
Steve
When the parents mutations are known and testing is done on an amnio for those specific mutations, the testing is very accurate. There is no test that is 100% accurate, but this is going to be pretty close.
As you probably know, not all CF kids are affected equally, even with the same mutations. I don't know which mutations we are talking about in your case, but in many cases symptoms may not be evident for immediately after birth and some times for months.
If it would make you feel better you can have the baby tested again for just those known mutations. However, I do not feel it is necessary.
Best of luck,
Steve
StevenKeiles
New member
Dear Lemons,
When the parents mutations are known and testing is done on an amnio for those specific mutations, the testing is very accurate. There is no test that is 100% accurate, but this is going to be pretty close.
As you probably know, not all CF kids are affected equally, even with the same mutations. I don't know which mutations we are talking about in your case, but in many cases symptoms may not be evident for immediately after birth and some times for months.
If it would make you feel better you can have the baby tested again for just those known mutations. However, I do not feel it is necessary.
Best of luck,
Steve
When the parents mutations are known and testing is done on an amnio for those specific mutations, the testing is very accurate. There is no test that is 100% accurate, but this is going to be pretty close.
As you probably know, not all CF kids are affected equally, even with the same mutations. I don't know which mutations we are talking about in your case, but in many cases symptoms may not be evident for immediately after birth and some times for months.
If it would make you feel better you can have the baby tested again for just those known mutations. However, I do not feel it is necessary.
Best of luck,
Steve
StevenKeiles
New member
Dear Lemons,
When the parents mutations are known and testing is done on an amnio for those specific mutations, the testing is very accurate. There is no test that is 100% accurate, but this is going to be pretty close.
As you probably know, not all CF kids are affected equally, even with the same mutations. I don't know which mutations we are talking about in your case, but in many cases symptoms may not be evident for immediately after birth and some times for months.
If it would make you feel better you can have the baby tested again for just those known mutations. However, I do not feel it is necessary.
Best of luck,
Steve
When the parents mutations are known and testing is done on an amnio for those specific mutations, the testing is very accurate. There is no test that is 100% accurate, but this is going to be pretty close.
As you probably know, not all CF kids are affected equally, even with the same mutations. I don't know which mutations we are talking about in your case, but in many cases symptoms may not be evident for immediately after birth and some times for months.
If it would make you feel better you can have the baby tested again for just those known mutations. However, I do not feel it is necessary.
Best of luck,
Steve
L
lemonstolemonade
Guest
<b><i> <span style=
" font-family: 'Times New Roman'; font-size: medium; color: #800080;">
THANK YOU!<br>
</i></b><br>
I just needed some reassurance that we weren't crazy to not test
her again. I'm fine with our health care for her and if I start
second-guessing everything because of others' opinions, I'm going
to go nuts! I just need to go with my gut instinct from now on.<br>
<br>
Thanks again!!<br>
<br>
<img src="">
" font-family: 'Times New Roman'; font-size: medium; color: #800080;">
THANK YOU!<br>
</i></b><br>
I just needed some reassurance that we weren't crazy to not test
her again. I'm fine with our health care for her and if I start
second-guessing everything because of others' opinions, I'm going
to go nuts! I just need to go with my gut instinct from now on.<br>
<br>
Thanks again!!<br>
<br>
<img src="">
L
lemonstolemonade
Guest
<b><i> <span style=
" font-family: 'Times New Roman'; font-size: medium; color: #800080;">
THANK YOU!<br>
</i></b><br>
I just needed some reassurance that we weren't crazy to not test
her again. I'm fine with our health care for her and if I start
second-guessing everything because of others' opinions, I'm going
to go nuts! I just need to go with my gut instinct from now on.<br>
<br>
Thanks again!!<br>
<br>
<img src="">
" font-family: 'Times New Roman'; font-size: medium; color: #800080;">
THANK YOU!<br>
</i></b><br>
I just needed some reassurance that we weren't crazy to not test
her again. I'm fine with our health care for her and if I start
second-guessing everything because of others' opinions, I'm going
to go nuts! I just need to go with my gut instinct from now on.<br>
<br>
Thanks again!!<br>
<br>
<img src="">
L
lemonstolemonade
Guest
<b><i> <span style=
" font-family: 'Times New Roman'; font-size: medium; color: #800080;">
THANK YOU!<br>
</i></b><br>
I just needed some reassurance that we weren't crazy to not test
her again. I'm fine with our health care for her and if I start
second-guessing everything because of others' opinions, I'm going
to go nuts! I just need to go with my gut instinct from now on.<br>
<br>
Thanks again!!<br>
<br>
<img src="">
" font-family: 'Times New Roman'; font-size: medium; color: #800080;">
THANK YOU!<br>
</i></b><br>
I just needed some reassurance that we weren't crazy to not test
her again. I'm fine with our health care for her and if I start
second-guessing everything because of others' opinions, I'm going
to go nuts! I just need to go with my gut instinct from now on.<br>
<br>
Thanks again!!<br>
<br>
<img src="">
When DS was born with Meconium Illeus -- he had two blood tests, and a normal sweat test. The first blood test, we were told came back as inconclusive and we were told that the 2nd one came back also -- somewhere down the line his records reflected homozygous deltaf508 -- classic CF. But in the back of our minds, despite the loose stools, digestive issues... we kept thinking maybe he DIDN'T have CF. Our doctor did tell us that CFers are born with normal lungs, normal lung function, but with infections, sticky mucus -- scaring occurs... So it's important to practice good lung care -- cpt, etc. to deal with this progressive disease.
So while we were in denial about his diagnosis, we did (still do) cpt 3-4 times a day and remarked that if it was all a mistake, misdiagnosis -- he'll have the healthiest lungs in the world.
It's a tough call. We didn't have DS retested because he'd been thru so much, his iron levels were so low thru out his NICU stay that they'd discussed giving him a transfusion --- the nurses and we as parents didn't want them taking any more blood than was necessary. Our first year dealing with CF was pretty much like going thru all the stages of grief -- disbelief, anger.... eventual acceptance. It's a tough tough diagnosis, plus when your child pretty much looks healthy and you have other people questioning it -- the he/she doesn't look sick comments -- it's difficult to handle at times.
Enjoy your little girl. See what the clinic/doctor says next time you go to the clinic....
So while we were in denial about his diagnosis, we did (still do) cpt 3-4 times a day and remarked that if it was all a mistake, misdiagnosis -- he'll have the healthiest lungs in the world.
It's a tough call. We didn't have DS retested because he'd been thru so much, his iron levels were so low thru out his NICU stay that they'd discussed giving him a transfusion --- the nurses and we as parents didn't want them taking any more blood than was necessary. Our first year dealing with CF was pretty much like going thru all the stages of grief -- disbelief, anger.... eventual acceptance. It's a tough tough diagnosis, plus when your child pretty much looks healthy and you have other people questioning it -- the he/she doesn't look sick comments -- it's difficult to handle at times.
Enjoy your little girl. See what the clinic/doctor says next time you go to the clinic....
When DS was born with Meconium Illeus -- he had two blood tests, and a normal sweat test. The first blood test, we were told came back as inconclusive and we were told that the 2nd one came back also -- somewhere down the line his records reflected homozygous deltaf508 -- classic CF. But in the back of our minds, despite the loose stools, digestive issues... we kept thinking maybe he DIDN'T have CF. Our doctor did tell us that CFers are born with normal lungs, normal lung function, but with infections, sticky mucus -- scaring occurs... So it's important to practice good lung care -- cpt, etc. to deal with this progressive disease.
So while we were in denial about his diagnosis, we did (still do) cpt 3-4 times a day and remarked that if it was all a mistake, misdiagnosis -- he'll have the healthiest lungs in the world.
It's a tough call. We didn't have DS retested because he'd been thru so much, his iron levels were so low thru out his NICU stay that they'd discussed giving him a transfusion --- the nurses and we as parents didn't want them taking any more blood than was necessary. Our first year dealing with CF was pretty much like going thru all the stages of grief -- disbelief, anger.... eventual acceptance. It's a tough tough diagnosis, plus when your child pretty much looks healthy and you have other people questioning it -- the he/she doesn't look sick comments -- it's difficult to handle at times.
Enjoy your little girl. See what the clinic/doctor says next time you go to the clinic....
So while we were in denial about his diagnosis, we did (still do) cpt 3-4 times a day and remarked that if it was all a mistake, misdiagnosis -- he'll have the healthiest lungs in the world.
It's a tough call. We didn't have DS retested because he'd been thru so much, his iron levels were so low thru out his NICU stay that they'd discussed giving him a transfusion --- the nurses and we as parents didn't want them taking any more blood than was necessary. Our first year dealing with CF was pretty much like going thru all the stages of grief -- disbelief, anger.... eventual acceptance. It's a tough tough diagnosis, plus when your child pretty much looks healthy and you have other people questioning it -- the he/she doesn't look sick comments -- it's difficult to handle at times.
Enjoy your little girl. See what the clinic/doctor says next time you go to the clinic....
When DS was born with Meconium Illeus -- he had two blood tests, and a normal sweat test. The first blood test, we were told came back as inconclusive and we were told that the 2nd one came back also -- somewhere down the line his records reflected homozygous deltaf508 -- classic CF. But in the back of our minds, despite the loose stools, digestive issues... we kept thinking maybe he DIDN'T have CF. Our doctor did tell us that CFers are born with normal lungs, normal lung function, but with infections, sticky mucus -- scaring occurs... So it's important to practice good lung care -- cpt, etc. to deal with this progressive disease.
So while we were in denial about his diagnosis, we did (still do) cpt 3-4 times a day and remarked that if it was all a mistake, misdiagnosis -- he'll have the healthiest lungs in the world.
It's a tough call. We didn't have DS retested because he'd been thru so much, his iron levels were so low thru out his NICU stay that they'd discussed giving him a transfusion --- the nurses and we as parents didn't want them taking any more blood than was necessary. Our first year dealing with CF was pretty much like going thru all the stages of grief -- disbelief, anger.... eventual acceptance. It's a tough tough diagnosis, plus when your child pretty much looks healthy and you have other people questioning it -- the he/she doesn't look sick comments -- it's difficult to handle at times.
Enjoy your little girl. See what the clinic/doctor says next time you go to the clinic....
So while we were in denial about his diagnosis, we did (still do) cpt 3-4 times a day and remarked that if it was all a mistake, misdiagnosis -- he'll have the healthiest lungs in the world.
It's a tough call. We didn't have DS retested because he'd been thru so much, his iron levels were so low thru out his NICU stay that they'd discussed giving him a transfusion --- the nurses and we as parents didn't want them taking any more blood than was necessary. Our first year dealing with CF was pretty much like going thru all the stages of grief -- disbelief, anger.... eventual acceptance. It's a tough tough diagnosis, plus when your child pretty much looks healthy and you have other people questioning it -- the he/she doesn't look sick comments -- it's difficult to handle at times.
Enjoy your little girl. See what the clinic/doctor says next time you go to the clinic....