I'm a carrier and my husband tested negative, but I'm concerned anyway. We have an 11-month old daughter who's always been low on the growth percentiles and suddenly got a rattling cough without having had a cold. Her pediatrician said wait and see if the cough goes away in a week before doing any testing. My question has to do with the greasy poop symptom, since that is one that my daughter has not had. Are greasy poops always present in CF babies?
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Possible Early Symptom
- Thread starter anonymous
- Start date
I'm a carrier and my husband tested negative, but I'm concerned anyway. We have an 11-month old daughter who's always been low on the growth percentiles and suddenly got a rattling cough without having had a cold. Her pediatrician said wait and see if the cough goes away in a week before doing any testing. My question has to do with the greasy poop symptom, since that is one that my daughter has not had. Are greasy poops always present in CF babies?
I'm a carrier and my husband tested negative, but I'm concerned anyway. We have an 11-month old daughter who's always been low on the growth percentiles and suddenly got a rattling cough without having had a cold. Her pediatrician said wait and see if the cough goes away in a week before doing any testing. My question has to do with the greasy poop symptom, since that is one that my daughter has not had. Are greasy poops always present in CF babies?
M
Mommafirst
Guest
Only in CF babies that are pancreatic insufficient. My daughter is pancreatic sufficient, and has normal poops. But our CF doctor said that pancreatic sufficiency is pretty rare in CFers. It is consistent with my daughters mutation. Do you know what CF mutation you carry?
<br>
I understand your concern, but kids do develop coughs -- sometimes out of nowhere. And normal viral coughs can linger for weeks! If that is her only symptom, I'd think you are probably just hyper sensitive to CF because you are a carrier.
<br>
Good luck!!!!
<br>
I understand your concern, but kids do develop coughs -- sometimes out of nowhere. And normal viral coughs can linger for weeks! If that is her only symptom, I'd think you are probably just hyper sensitive to CF because you are a carrier.
<br>
Good luck!!!!
M
Mommafirst
Guest
Only in CF babies that are pancreatic insufficient. My daughter is pancreatic sufficient, and has normal poops. But our CF doctor said that pancreatic sufficiency is pretty rare in CFers. It is consistent with my daughters mutation. Do you know what CF mutation you carry?
<br>
I understand your concern, but kids do develop coughs -- sometimes out of nowhere. And normal viral coughs can linger for weeks! If that is her only symptom, I'd think you are probably just hyper sensitive to CF because you are a carrier.
<br>
Good luck!!!!
<br>
I understand your concern, but kids do develop coughs -- sometimes out of nowhere. And normal viral coughs can linger for weeks! If that is her only symptom, I'd think you are probably just hyper sensitive to CF because you are a carrier.
<br>
Good luck!!!!
M
Mommafirst
Guest
Only in CF babies that are pancreatic insufficient. My daughter is pancreatic sufficient, and has normal poops. But our CF doctor said that pancreatic sufficiency is pretty rare in CFers. It is consistent with my daughters mutation. Do you know what CF mutation you carry?
<br>
I understand your concern, but kids do develop coughs -- sometimes out of nowhere. And normal viral coughs can linger for weeks! If that is her only symptom, I'd think you are probably just hyper sensitive to CF because you are a carrier.
<br>
Good luck!!!!
<br>
I understand your concern, but kids do develop coughs -- sometimes out of nowhere. And normal viral coughs can linger for weeks! If that is her only symptom, I'd think you are probably just hyper sensitive to CF because you are a carrier.
<br>
Good luck!!!!
I don't want to dump big fears on your lap because most of the time a baby with a cough is just a baby with a cold and a small baby is just a small baby.
The problem is that a negative screen for CF carriers is not going to be definitive unless it was one of the full-panel tests by Ambry or Quest. The garden-variety testing only checks for 25-100 of the Cf mutations but there are something like 1300 possible. I was one of them: my spouse came up positive w/ dF508 and I tested negative so we thought we'd doged that one...but after our son was diagnosed w/CF we found out the hard way that I carried one of the rare mutations.
So if you are in need of greater conclusiveness than what you've got, you may want to get your spouse tested on the Ambry/Quest version or ask for your baby to get a test.
The problem is that a negative screen for CF carriers is not going to be definitive unless it was one of the full-panel tests by Ambry or Quest. The garden-variety testing only checks for 25-100 of the Cf mutations but there are something like 1300 possible. I was one of them: my spouse came up positive w/ dF508 and I tested negative so we thought we'd doged that one...but after our son was diagnosed w/CF we found out the hard way that I carried one of the rare mutations.
So if you are in need of greater conclusiveness than what you've got, you may want to get your spouse tested on the Ambry/Quest version or ask for your baby to get a test.
I don't want to dump big fears on your lap because most of the time a baby with a cough is just a baby with a cold and a small baby is just a small baby.
The problem is that a negative screen for CF carriers is not going to be definitive unless it was one of the full-panel tests by Ambry or Quest. The garden-variety testing only checks for 25-100 of the Cf mutations but there are something like 1300 possible. I was one of them: my spouse came up positive w/ dF508 and I tested negative so we thought we'd doged that one...but after our son was diagnosed w/CF we found out the hard way that I carried one of the rare mutations.
So if you are in need of greater conclusiveness than what you've got, you may want to get your spouse tested on the Ambry/Quest version or ask for your baby to get a test.
The problem is that a negative screen for CF carriers is not going to be definitive unless it was one of the full-panel tests by Ambry or Quest. The garden-variety testing only checks for 25-100 of the Cf mutations but there are something like 1300 possible. I was one of them: my spouse came up positive w/ dF508 and I tested negative so we thought we'd doged that one...but after our son was diagnosed w/CF we found out the hard way that I carried one of the rare mutations.
So if you are in need of greater conclusiveness than what you've got, you may want to get your spouse tested on the Ambry/Quest version or ask for your baby to get a test.
I don't want to dump big fears on your lap because most of the time a baby with a cough is just a baby with a cold and a small baby is just a small baby.
The problem is that a negative screen for CF carriers is not going to be definitive unless it was one of the full-panel tests by Ambry or Quest. The garden-variety testing only checks for 25-100 of the Cf mutations but there are something like 1300 possible. I was one of them: my spouse came up positive w/ dF508 and I tested negative so we thought we'd doged that one...but after our son was diagnosed w/CF we found out the hard way that I carried one of the rare mutations.
So if you are in need of greater conclusiveness than what you've got, you may want to get your spouse tested on the Ambry/Quest version or ask for your baby to get a test.
The problem is that a negative screen for CF carriers is not going to be definitive unless it was one of the full-panel tests by Ambry or Quest. The garden-variety testing only checks for 25-100 of the Cf mutations but there are something like 1300 possible. I was one of them: my spouse came up positive w/ dF508 and I tested negative so we thought we'd doged that one...but after our son was diagnosed w/CF we found out the hard way that I carried one of the rare mutations.
So if you are in need of greater conclusiveness than what you've got, you may want to get your spouse tested on the Ambry/Quest version or ask for your baby to get a test.
Thanks for the replies - when my husband tested negative, the doctor did say there were some mutations it wouldn't catch. With his negative test, the odds we were given of conceiving a baby with CF were something like 1 in 4000 so I didn't give it another thought until recently. I probably am being hypersensitive to possible signs of CF though. My daughter seems to have some of the characteristics and I'm torn between explaining them away and wanting to get her tested immediately. I appreciate all the posts in this wonderful discussion forum. Heather, your comment on pancreatic sufficiency/insufficiency was a very helpful piece of information. Thank you. - Helen
Thanks for the replies - when my husband tested negative, the doctor did say there were some mutations it wouldn't catch. With his negative test, the odds we were given of conceiving a baby with CF were something like 1 in 4000 so I didn't give it another thought until recently. I probably am being hypersensitive to possible signs of CF though. My daughter seems to have some of the characteristics and I'm torn between explaining them away and wanting to get her tested immediately. I appreciate all the posts in this wonderful discussion forum. Heather, your comment on pancreatic sufficiency/insufficiency was a very helpful piece of information. Thank you. - Helen
Thanks for the replies - when my husband tested negative, the doctor did say there were some mutations it wouldn't catch. With his negative test, the odds we were given of conceiving a baby with CF were something like 1 in 4000 so I didn't give it another thought until recently. I probably am being hypersensitive to possible signs of CF though. My daughter seems to have some of the characteristics and I'm torn between explaining them away and wanting to get her tested immediately. I appreciate all the posts in this wonderful discussion forum. Heather, your comment on pancreatic sufficiency/insufficiency was a very helpful piece of information. Thank you. - Helen
My daughter's poops were not greasy. They were more mushy or hard - one or the other and rarely "normal". She wasn't diagnosed until 12 months old. If your daughter is breastfed, that could be helping her poops be more normal.
Only one of us (me & my husband) would test as a carrier for CF bc the other one of us has a mutation that isn't screened for. We don't know who has which mutation though.
I would push for testing just to hopefully rule it out. If your doctor blows it off you should insist.
Best Wishes!
Only one of us (me & my husband) would test as a carrier for CF bc the other one of us has a mutation that isn't screened for. We don't know who has which mutation though.
I would push for testing just to hopefully rule it out. If your doctor blows it off you should insist.
Best Wishes!
My daughter's poops were not greasy. They were more mushy or hard - one or the other and rarely "normal". She wasn't diagnosed until 12 months old. If your daughter is breastfed, that could be helping her poops be more normal.
Only one of us (me & my husband) would test as a carrier for CF bc the other one of us has a mutation that isn't screened for. We don't know who has which mutation though.
I would push for testing just to hopefully rule it out. If your doctor blows it off you should insist.
Best Wishes!
Only one of us (me & my husband) would test as a carrier for CF bc the other one of us has a mutation that isn't screened for. We don't know who has which mutation though.
I would push for testing just to hopefully rule it out. If your doctor blows it off you should insist.
Best Wishes!
My daughter's poops were not greasy. They were more mushy or hard - one or the other and rarely "normal". She wasn't diagnosed until 12 months old. If your daughter is breastfed, that could be helping her poops be more normal.
Only one of us (me & my husband) would test as a carrier for CF bc the other one of us has a mutation that isn't screened for. We don't know who has which mutation though.
I would push for testing just to hopefully rule it out. If your doctor blows it off you should insist.
Best Wishes!
Only one of us (me & my husband) would test as a carrier for CF bc the other one of us has a mutation that isn't screened for. We don't know who has which mutation though.
I would push for testing just to hopefully rule it out. If your doctor blows it off you should insist.
Best Wishes!
It depends upon the test. There are almost 3000 known mutations. If your husband was tested for anything less than the Full Cystic Fibrosis Sequencing then he would have an incomplete answer. The first that test that is normally administered, because that is what the Insurance Company will allow, is for 250 mutations. You do the math. You need to take your child to an APPROVED CYSTIC FIBROSIS CLINIC and see A CYSTIC FIBROSIS SPECIALIST. Go to cff.org and you can find the nearest approved clinic. I am 80 years of age with CF and I am 100% sure that my Father had CF. We know for certain that he and my Mother were both carriers. I am certain that my Father had 2 mild mutations and was able to father 4 children and one miscarriage. You may love your pediatrician but he/she is not a CF Specialist.I'm a carrier and my husband tested negative, but I'm concerned anyway. We have an 11-month old daughter who's always been low on the growth percentiles and suddenly got a rattling cough without having had a cold. Her pediatrician said wait and see if the cough goes away in a week before doing any testing. My question has to do with the greasy poop symptom, since that is one that my daughter has not had. Are greasy poops always present in CF babies?
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80 years old?? Wow! Bless you. You give hope.I'm a carrier and my husband tested negative, but I'm concerned anyway. We have an 11-month old daughter who's always been low on the growth percentiles and suddenly got a rattling cough without having had a cold. Her pediatrician said wait and see if the cough goes away in a week before doing any testing. My question has to do with the greasy poop symptom, since that is one that my daughter has not had. Are greasy poops always present in CF babies?