Does this sound like possible CF?

[chake]

Hi everyone ~ During pregnancy I discovered that I am a CF carrier, so my husband was tested and his results came back negative (they only tested the most common mutations). Anyway, I still wonder if my son (who is now 3 months old) has CF, even though the chances are slim.

Here are some of the possible symptoms I have noticed:

-His forehead SOMETIMES tastes a little bit salty to me ... do non-CF children taste salty too, or is this a pretty sure sign? It's not all the time, but sometimes ... especially after he's been sweating.

-Frequent BM's, although they are not smelly or greasy (but I'm still not very clear on what greasy stools look like??). I breastfeed him ... would the stools of a breastfed baby w/ CF look different? And his toots are really smelly ... does that mean anything?

-Stuffy nose ... he had a cold 2 weeks ago and is still stuffy ...

He definitely does not have a failure to thrive ... he was 15 pounds, 8 ounces before he turned 3 months old.

Do these symptoms sound like probable CF?

I want to have the Ambry panel run on him, but it is out of network for our insurance. Should I find out which mutation I have and just have that test run on him instead?

THANK YOU for your input!

 

[chake]

Hi everyone ~ During pregnancy I discovered that I am a CF carrier, so my husband was tested and his results came back negative (they only tested the most common mutations). Anyway, I still wonder if my son (who is now 3 months old) has CF, even though the chances are slim.

Here are some of the possible symptoms I have noticed:

-His forehead SOMETIMES tastes a little bit salty to me ... do non-CF children taste salty too, or is this a pretty sure sign? It's not all the time, but sometimes ... especially after he's been sweating.

-Frequent BM's, although they are not smelly or greasy (but I'm still not very clear on what greasy stools look like??). I breastfeed him ... would the stools of a breastfed baby w/ CF look different? And his toots are really smelly ... does that mean anything?

-Stuffy nose ... he had a cold 2 weeks ago and is still stuffy ...

He definitely does not have a failure to thrive ... he was 15 pounds, 8 ounces before he turned 3 months old.

Do these symptoms sound like probable CF?

I want to have the Ambry panel run on him, but it is out of network for our insurance. Should I find out which mutation I have and just have that test run on him instead?

THANK YOU for your input!

 

[chake]

Hi everyone ~ During pregnancy I discovered that I am a CF carrier, so my husband was tested and his results came back negative (they only tested the most common mutations). Anyway, I still wonder if my son (who is now 3 months old) has CF, even though the chances are slim.

Here are some of the possible symptoms I have noticed:

-His forehead SOMETIMES tastes a little bit salty to me ... do non-CF children taste salty too, or is this a pretty sure sign? It's not all the time, but sometimes ... especially after he's been sweating.

-Frequent BM's, although they are not smelly or greasy (but I'm still not very clear on what greasy stools look like??). I breastfeed him ... would the stools of a breastfed baby w/ CF look different? And his toots are really smelly ... does that mean anything?

-Stuffy nose ... he had a cold 2 weeks ago and is still stuffy ...

He definitely does not have a failure to thrive ... he was 15 pounds, 8 ounces before he turned 3 months old.

Do these symptoms sound like probable CF?

I want to have the Ambry panel run on him, but it is out of network for our insurance. Should I find out which mutation I have and just have that test run on him instead?

THANK YOU for your input!

 

[chake]

Hi everyone ~ During pregnancy I discovered that I am a CF carrier, so my husband was tested and his results came back negative (they only tested the most common mutations). Anyway, I still wonder if my son (who is now 3 months old) has CF, even though the chances are slim.

Here are some of the possible symptoms I have noticed:

-His forehead SOMETIMES tastes a little bit salty to me ... do non-CF children taste salty too, or is this a pretty sure sign? It's not all the time, but sometimes ... especially after he's been sweating.

-Frequent BM's, although they are not smelly or greasy (but I'm still not very clear on what greasy stools look like??). I breastfeed him ... would the stools of a breastfed baby w/ CF look different? And his toots are really smelly ... does that mean anything?

-Stuffy nose ... he had a cold 2 weeks ago and is still stuffy ...

He definitely does not have a failure to thrive ... he was 15 pounds, 8 ounces before he turned 3 months old.

Do these symptoms sound like probable CF?

I want to have the Ambry panel run on him, but it is out of network for our insurance. Should I find out which mutation I have and just have that test run on him instead?

THANK YOU for your input!

 

[chake]

Hi everyone ~ During pregnancy I discovered that I am a CF carrier, so my husband was tested and his results came back negative (they only tested the most common mutations). Anyway, I still wonder if my son (who is now 3 months old) has CF, even though the chances are slim.

Here are some of the possible symptoms I have noticed:

-His forehead SOMETIMES tastes a little bit salty to me ... do non-CF children taste salty too, or is this a pretty sure sign? It's not all the time, but sometimes ... especially after he's been sweating.

-Frequent BM's, although they are not smelly or greasy (but I'm still not very clear on what greasy stools look like??). I breastfeed him ... would the stools of a breastfed baby w/ CF look different? And his toots are really smelly ... does that mean anything?

-Stuffy nose ... he had a cold 2 weeks ago and is still stuffy ...

He definitely does not have a failure to thrive ... he was 15 pounds, 8 ounces before he turned 3 months old.

Do these symptoms sound like probable CF?

I want to have the Ambry panel run on him, but it is out of network for our insurance. Should I find out which mutation I have and just have that test run on him instead?

THANK YOU for your input!

 

[chake]

Hi everyone ~ During pregnancy I discovered that I am a CF carrier, so my husband was tested and his results came back negative (they only tested the most common mutations). Anyway, I still wonder if my son (who is now 3 months old) has CF, even though the chances are slim.

Here are some of the possible symptoms I have noticed:

-His forehead SOMETIMES tastes a little bit salty to me ... do non-CF children taste salty too, or is this a pretty sure sign? It's not all the time, but sometimes ... especially after he's been sweating.

-Frequent BM's, although they are not smelly or greasy (but I'm still not very clear on what greasy stools look like??). I breastfeed him ... would the stools of a breastfed baby w/ CF look different? And his toots are really smelly ... does that mean anything?

-Stuffy nose ... he had a cold 2 weeks ago and is still stuffy ...

He definitely does not have a failure to thrive ... he was 15 pounds, 8 ounces before he turned 3 months old.

Do these symptoms sound like probable CF?

I want to have the Ambry panel run on him, but it is out of network for our insurance. Should I find out which mutation I have and just have that test run on him instead?

THANK YOU for your input!

 

[ktsmom]

Hi - I will try to answer some of your questions.

Salty taste - not a consistant result, either way. Some taste salty and some don't.

BM's - I breastfed my daughter (she was not diagnosed until age 3) and her BM's were mostly green, kind of foamy. Although she lost weight at first, she eventually turned around and started gaining. It wasn't until age 2 that she began to fall on the growth charts. But in retrospect she was ALWAYS hungry.

Stuffy nose - doesn't necessarily mean anything. How about a cough?

Getting the Ambry panel testing him for your mutation means nothing. He would have to have your faulty gene AND one from your husband. Sometimes insurance companies will allow Ambry (for example) as if they are in-network, if they are the ONLY providers available to perform a specific procedure. Call the insurance company and ask. Do you have a provider that shares your concerns and will order the test? Perhaps a sweat test could be performed on your child.

If you are this concerned, probably the closest way to know for sure is to have an Ambry Full Amplified Panel done on your son. Good luck!

 

[ktsmom]

Hi - I will try to answer some of your questions.

Salty taste - not a consistant result, either way. Some taste salty and some don't.

BM's - I breastfed my daughter (she was not diagnosed until age 3) and her BM's were mostly green, kind of foamy. Although she lost weight at first, she eventually turned around and started gaining. It wasn't until age 2 that she began to fall on the growth charts. But in retrospect she was ALWAYS hungry.

Stuffy nose - doesn't necessarily mean anything. How about a cough?

Getting the Ambry panel testing him for your mutation means nothing. He would have to have your faulty gene AND one from your husband. Sometimes insurance companies will allow Ambry (for example) as if they are in-network, if they are the ONLY providers available to perform a specific procedure. Call the insurance company and ask. Do you have a provider that shares your concerns and will order the test? Perhaps a sweat test could be performed on your child.

If you are this concerned, probably the closest way to know for sure is to have an Ambry Full Amplified Panel done on your son. Good luck!

 

[ktsmom]

Hi - I will try to answer some of your questions.

Salty taste - not a consistant result, either way. Some taste salty and some don't.

BM's - I breastfed my daughter (she was not diagnosed until age 3) and her BM's were mostly green, kind of foamy. Although she lost weight at first, she eventually turned around and started gaining. It wasn't until age 2 that she began to fall on the growth charts. But in retrospect she was ALWAYS hungry.

Stuffy nose - doesn't necessarily mean anything. How about a cough?

Getting the Ambry panel testing him for your mutation means nothing. He would have to have your faulty gene AND one from your husband. Sometimes insurance companies will allow Ambry (for example) as if they are in-network, if they are the ONLY providers available to perform a specific procedure. Call the insurance company and ask. Do you have a provider that shares your concerns and will order the test? Perhaps a sweat test could be performed on your child.

If you are this concerned, probably the closest way to know for sure is to have an Ambry Full Amplified Panel done on your son. Good luck!

 

[ktsmom]

Hi - I will try to answer some of your questions.

Salty taste - not a consistant result, either way. Some taste salty and some don't.

BM's - I breastfed my daughter (she was not diagnosed until age 3) and her BM's were mostly green, kind of foamy. Although she lost weight at first, she eventually turned around and started gaining. It wasn't until age 2 that she began to fall on the growth charts. But in retrospect she was ALWAYS hungry.

Stuffy nose - doesn't necessarily mean anything. How about a cough?

Getting the Ambry panel testing him for your mutation means nothing. He would have to have your faulty gene AND one from your husband. Sometimes insurance companies will allow Ambry (for example) as if they are in-network, if they are the ONLY providers available to perform a specific procedure. Call the insurance company and ask. Do you have a provider that shares your concerns and will order the test? Perhaps a sweat test could be performed on your child.

If you are this concerned, probably the closest way to know for sure is to have an Ambry Full Amplified Panel done on your son. Good luck!

 

[ktsmom]

Hi - I will try to answer some of your questions.

Salty taste - not a consistant result, either way. Some taste salty and some don't.

BM's - I breastfed my daughter (she was not diagnosed until age 3) and her BM's were mostly green, kind of foamy. Although she lost weight at first, she eventually turned around and started gaining. It wasn't until age 2 that she began to fall on the growth charts. But in retrospect she was ALWAYS hungry.

Stuffy nose - doesn't necessarily mean anything. How about a cough?

Getting the Ambry panel testing him for your mutation means nothing. He would have to have your faulty gene AND one from your husband. Sometimes insurance companies will allow Ambry (for example) as if they are in-network, if they are the ONLY providers available to perform a specific procedure. Call the insurance company and ask. Do you have a provider that shares your concerns and will order the test? Perhaps a sweat test could be performed on your child.

If you are this concerned, probably the closest way to know for sure is to have an Ambry Full Amplified Panel done on your son. Good luck!

 

[ktsmom]

Hi - I will try to answer some of your questions.

Salty taste - not a consistant result, either way. Some taste salty and some don't.

BM's - I breastfed my daughter (she was not diagnosed until age 3) and her BM's were mostly green, kind of foamy. Although she lost weight at first, she eventually turned around and started gaining. It wasn't until age 2 that she began to fall on the growth charts. But in retrospect she was ALWAYS hungry.

Stuffy nose - doesn't necessarily mean anything. How about a cough?

Getting the Ambry panel testing him for your mutation means nothing. He would have to have your faulty gene AND one from your husband. Sometimes insurance companies will allow Ambry (for example) as if they are in-network, if they are the ONLY providers available to perform a specific procedure. Call the insurance company and ask. Do you have a provider that shares your concerns and will order the test? Perhaps a sweat test could be performed on your child.

If you are this concerned, probably the closest way to know for sure is to have an Ambry Full Amplified Panel done on your son. Good luck!

 

[Alyssa]

You haven't said anything terribly alarming so far, but it's definitely worth checking out just to make sure.

*everyone can taste a bit salty -- this is usually a helpful gauge if the person has really excessive amounts of salt on their skin -- there are far more people in the inbetween area so it's not really something you can count on for sure.
*only one cold -- pretty common for any baby
*frequent but not terribly smelly or greasy BM sounds good
*good weight gain - if he has CF this could mean he is pancreatic sufficient (20% of those with CF do not have digestive issues)

A full panel out of network would cost quite a bit -- you could start with just the sweat test -- it does have it's short comings but if you get a really clear positive number you would have a much easier time moving forward with a full panel test.
Read the first entry of my blog page for more info about sweat test numbers and what they mean.
Best wishes

 

[Alyssa]

You haven't said anything terribly alarming so far, but it's definitely worth checking out just to make sure.

*everyone can taste a bit salty -- this is usually a helpful gauge if the person has really excessive amounts of salt on their skin -- there are far more people in the inbetween area so it's not really something you can count on for sure.
*only one cold -- pretty common for any baby
*frequent but not terribly smelly or greasy BM sounds good
*good weight gain - if he has CF this could mean he is pancreatic sufficient (20% of those with CF do not have digestive issues)

A full panel out of network would cost quite a bit -- you could start with just the sweat test -- it does have it's short comings but if you get a really clear positive number you would have a much easier time moving forward with a full panel test.
Read the first entry of my blog page for more info about sweat test numbers and what they mean.
Best wishes

 

[Alyssa]

You haven't said anything terribly alarming so far, but it's definitely worth checking out just to make sure.

*everyone can taste a bit salty -- this is usually a helpful gauge if the person has really excessive amounts of salt on their skin -- there are far more people in the inbetween area so it's not really something you can count on for sure.
*only one cold -- pretty common for any baby
*frequent but not terribly smelly or greasy BM sounds good
*good weight gain - if he has CF this could mean he is pancreatic sufficient (20% of those with CF do not have digestive issues)

A full panel out of network would cost quite a bit -- you could start with just the sweat test -- it does have it's short comings but if you get a really clear positive number you would have a much easier time moving forward with a full panel test.
Read the first entry of my blog page for more info about sweat test numbers and what they mean.
Best wishes

 

[Alyssa]

You haven't said anything terribly alarming so far, but it's definitely worth checking out just to make sure.

*everyone can taste a bit salty -- this is usually a helpful gauge if the person has really excessive amounts of salt on their skin -- there are far more people in the inbetween area so it's not really something you can count on for sure.
*only one cold -- pretty common for any baby
*frequent but not terribly smelly or greasy BM sounds good
*good weight gain - if he has CF this could mean he is pancreatic sufficient (20% of those with CF do not have digestive issues)

A full panel out of network would cost quite a bit -- you could start with just the sweat test -- it does have it's short comings but if you get a really clear positive number you would have a much easier time moving forward with a full panel test.
Read the first entry of my blog page for more info about sweat test numbers and what they mean.
Best wishes

 

[Alyssa]

You haven't said anything terribly alarming so far, but it's definitely worth checking out just to make sure.

*everyone can taste a bit salty -- this is usually a helpful gauge if the person has really excessive amounts of salt on their skin -- there are far more people in the inbetween area so it's not really something you can count on for sure.
*only one cold -- pretty common for any baby
*frequent but not terribly smelly or greasy BM sounds good
*good weight gain - if he has CF this could mean he is pancreatic sufficient (20% of those with CF do not have digestive issues)

A full panel out of network would cost quite a bit -- you could start with just the sweat test -- it does have it's short comings but if you get a really clear positive number you would have a much easier time moving forward with a full panel test.
Read the first entry of my blog page for more info about sweat test numbers and what they mean.
Best wishes

 

[Alyssa]

You haven't said anything terribly alarming so far, but it's definitely worth checking out just to make sure.

*everyone can taste a bit salty -- this is usually a helpful gauge if the person has really excessive amounts of salt on their skin -- there are far more people in the inbetween area so it's not really something you can count on for sure.
*only one cold -- pretty common for any baby
*frequent but not terribly smelly or greasy BM sounds good
*good weight gain - if he has CF this could mean he is pancreatic sufficient (20% of those with CF do not have digestive issues)

A full panel out of network would cost quite a bit -- you could start with just the sweat test -- it does have it's short comings but if you get a really clear positive number you would have a much easier time moving forward with a full panel test.
Read the first entry of my blog page for more info about sweat test numbers and what they mean.
Best wishes

 

[froggymama]

My daughter had about 12 bowel movements a day and breastfed every ten minutes by the time she was four months. She was not absorbing anything. Her bowel movements were huge, but because she was breastfed, they smelled normal. She had no respiratory symptoms (and at 22 months has none!!!) so everyone is so completely different. I wouldn't worry, but you're a mom, so of course you're going to worry! Your kid sounds pretty normal, but for your own reassurance, get a sweat test. I think they're around $300. Which might be worth it to get a good night's sleep. Keep in mind, CF is pretty rare, only 1 in 3500. So the odds are with you. Good luck.

 

[froggymama]

My daughter had about 12 bowel movements a day and breastfed every ten minutes by the time she was four months. She was not absorbing anything. Her bowel movements were huge, but because she was breastfed, they smelled normal. She had no respiratory symptoms (and at 22 months has none!!!) so everyone is so completely different. I wouldn't worry, but you're a mom, so of course you're going to worry! Your kid sounds pretty normal, but for your own reassurance, get a sweat test. I think they're around $300. Which might be worth it to get a good night's sleep. Keep in mind, CF is pretty rare, only 1 in 3500. So the odds are with you. Good luck.