Being tested for CF...

M

moocow789

New member
I am not sure if this belongs here or not, I apologize if this is not an appropriate question.

My 18 month old daughter has never had any respiratory concerns to date. She is however, very tiny and not even on the growth charts. She was 5 lbs, 3 oz at birth. At 12 months, she was 14 lbs 8 oz, and at 18 months she is 16 lbs 10 oz. She is 30/31ish inches tall (so 30th percentile approx). She does not eat a lot, but is very active. I just thought she was small, since there have been no other concerns. Her ped just sent us to a gastroenterologist just to make sure there was nothing else going on. The GI dr ordered a sweat test right away to check for CF. Is this possible - we were never notified that anything looked wrong with her newborn screening, and there have been no other health issues. Is it possible to have CF and the only symptom so far is her light appetite and low weight? I appreciate any info anyone has before we get her sweat test scheduled and done
 
M

moocow789

New member
I am not sure if this belongs here or not, I apologize if this is not an appropriate question.

My 18 month old daughter has never had any respiratory concerns to date. She is however, very tiny and not even on the growth charts. She was 5 lbs, 3 oz at birth. At 12 months, she was 14 lbs 8 oz, and at 18 months she is 16 lbs 10 oz. She is 30/31ish inches tall (so 30th percentile approx). She does not eat a lot, but is very active. I just thought she was small, since there have been no other concerns. Her ped just sent us to a gastroenterologist just to make sure there was nothing else going on. The GI dr ordered a sweat test right away to check for CF. Is this possible - we were never notified that anything looked wrong with her newborn screening, and there have been no other health issues. Is it possible to have CF and the only symptom so far is her light appetite and low weight? I appreciate any info anyone has before we get her sweat test scheduled and done
 
M

moocow789

New member
I am not sure if this belongs here or not, I apologize if this is not an appropriate question.

My 18 month old daughter has never had any respiratory concerns to date. She is however, very tiny and not even on the growth charts. She was 5 lbs, 3 oz at birth. At 12 months, she was 14 lbs 8 oz, and at 18 months she is 16 lbs 10 oz. She is 30/31ish inches tall (so 30th percentile approx). She does not eat a lot, but is very active. I just thought she was small, since there have been no other concerns. Her ped just sent us to a gastroenterologist just to make sure there was nothing else going on. The GI dr ordered a sweat test right away to check for CF. Is this possible - we were never notified that anything looked wrong with her newborn screening, and there have been no other health issues. Is it possible to have CF and the only symptom so far is her light appetite and low weight? I appreciate any info anyone has before we get her sweat test scheduled and done
 
M

moocow789

New member
I am not sure if this belongs here or not, I apologize if this is not an appropriate question.

My 18 month old daughter has never had any respiratory concerns to date. She is however, very tiny and not even on the growth charts. She was 5 lbs, 3 oz at birth. At 12 months, she was 14 lbs 8 oz, and at 18 months she is 16 lbs 10 oz. She is 30/31ish inches tall (so 30th percentile approx). She does not eat a lot, but is very active. I just thought she was small, since there have been no other concerns. Her ped just sent us to a gastroenterologist just to make sure there was nothing else going on. The GI dr ordered a sweat test right away to check for CF. Is this possible - we were never notified that anything looked wrong with her newborn screening, and there have been no other health issues. Is it possible to have CF and the only symptom so far is her light appetite and low weight? I appreciate any info anyone has before we get her sweat test scheduled and done
 
M

moocow789

New member
I am not sure if this belongs here or not, I apologize if this is not an appropriate question.
<br />
<br />My 18 month old daughter has never had any respiratory concerns to date. She is however, very tiny and not even on the growth charts. She was 5 lbs, 3 oz at birth. At 12 months, she was 14 lbs 8 oz, and at 18 months she is 16 lbs 10 oz. She is 30/31ish inches tall (so 30th percentile approx). She does not eat a lot, but is very active. I just thought she was small, since there have been no other concerns. Her ped just sent us to a gastroenterologist just to make sure there was nothing else going on. The GI dr ordered a sweat test right away to check for CF. Is this possible - we were never notified that anything looked wrong with her newborn screening, and there have been no other health issues. Is it possible to have CF and the only symptom so far is her light appetite and low weight? I appreciate any info anyone has before we get her sweat test scheduled and done
 
M

Mommafirst

Guest
What are her stools like? If the GI suspects that her body isn't absorbing the food she eats, it is likely that they are going to check for CF first. It IS possible to have very few symptoms at this age. For many respiratory issues don't reveal themselves for many years.

As far as the newborn screen, it is just a screen. Mostly it has a lot (90%) of false positives. Although it is very rare (like 1% or so) it can product a false negative. So the odds are good that if your daughter had the CF newborn screen (not all states do them) that it is unlikely CF, but not definite.

Sorry, I'm not much help. Bottomline, yes, it is possible, but it isn't very likely.
 
M

Mommafirst

Guest
What are her stools like? If the GI suspects that her body isn't absorbing the food she eats, it is likely that they are going to check for CF first. It IS possible to have very few symptoms at this age. For many respiratory issues don't reveal themselves for many years.

As far as the newborn screen, it is just a screen. Mostly it has a lot (90%) of false positives. Although it is very rare (like 1% or so) it can product a false negative. So the odds are good that if your daughter had the CF newborn screen (not all states do them) that it is unlikely CF, but not definite.

Sorry, I'm not much help. Bottomline, yes, it is possible, but it isn't very likely.
 
M

Mommafirst

Guest
What are her stools like? If the GI suspects that her body isn't absorbing the food she eats, it is likely that they are going to check for CF first. It IS possible to have very few symptoms at this age. For many respiratory issues don't reveal themselves for many years.

As far as the newborn screen, it is just a screen. Mostly it has a lot (90%) of false positives. Although it is very rare (like 1% or so) it can product a false negative. So the odds are good that if your daughter had the CF newborn screen (not all states do them) that it is unlikely CF, but not definite.

Sorry, I'm not much help. Bottomline, yes, it is possible, but it isn't very likely.
 
M

Mommafirst

Guest
What are her stools like? If the GI suspects that her body isn't absorbing the food she eats, it is likely that they are going to check for CF first. It IS possible to have very few symptoms at this age. For many respiratory issues don't reveal themselves for many years.

As far as the newborn screen, it is just a screen. Mostly it has a lot (90%) of false positives. Although it is very rare (like 1% or so) it can product a false negative. So the odds are good that if your daughter had the CF newborn screen (not all states do them) that it is unlikely CF, but not definite.

Sorry, I'm not much help. Bottomline, yes, it is possible, but it isn't very likely.
 
M

Mommafirst

Guest
What are her stools like? If the GI suspects that her body isn't absorbing the food she eats, it is likely that they are going to check for CF first. It IS possible to have very few symptoms at this age. For many respiratory issues don't reveal themselves for many years.
<br />
<br />As far as the newborn screen, it is just a screen. Mostly it has a lot (90%) of false positives. Although it is very rare (like 1% or so) it can product a false negative. So the odds are good that if your daughter had the CF newborn screen (not all states do them) that it is unlikely CF, but not definite.
<br />
<br />Sorry, I'm not much help. Bottomline, yes, it is possible, but it isn't very likely.
 
K

ktsmom

New member
Our daughter presented only with GI issues but her growth chart percentiles were <i>falling</i>, not maintaining at a steady (albeit low) percentile. There is a difference. Also, she was constantly hungry and her BM's were bulky and greasy (sorry TMI) and lots of tummy distension, pain. All symptoms of her not digesting/getting any nutrients from what she was eating. She was finally diagnosed with CF at age 3, at which point she was neither a happy nor energetic child.

I would just make sure that you get the sweat test done somewhere that knows what they are doing. It certainly doesn't hurt to try to rule out CF and I personally think your GI is doing the right thing. Best of luck and let us know how it goes.
 
K

ktsmom

New member
Our daughter presented only with GI issues but her growth chart percentiles were <i>falling</i>, not maintaining at a steady (albeit low) percentile. There is a difference. Also, she was constantly hungry and her BM's were bulky and greasy (sorry TMI) and lots of tummy distension, pain. All symptoms of her not digesting/getting any nutrients from what she was eating. She was finally diagnosed with CF at age 3, at which point she was neither a happy nor energetic child.

I would just make sure that you get the sweat test done somewhere that knows what they are doing. It certainly doesn't hurt to try to rule out CF and I personally think your GI is doing the right thing. Best of luck and let us know how it goes.
 
K

ktsmom

New member
Our daughter presented only with GI issues but her growth chart percentiles were <i>falling</i>, not maintaining at a steady (albeit low) percentile. There is a difference. Also, she was constantly hungry and her BM's were bulky and greasy (sorry TMI) and lots of tummy distension, pain. All symptoms of her not digesting/getting any nutrients from what she was eating. She was finally diagnosed with CF at age 3, at which point she was neither a happy nor energetic child.

I would just make sure that you get the sweat test done somewhere that knows what they are doing. It certainly doesn't hurt to try to rule out CF and I personally think your GI is doing the right thing. Best of luck and let us know how it goes.
 
K

ktsmom

New member
Our daughter presented only with GI issues but her growth chart percentiles were <i>falling</i>, not maintaining at a steady (albeit low) percentile. There is a difference. Also, she was constantly hungry and her BM's were bulky and greasy (sorry TMI) and lots of tummy distension, pain. All symptoms of her not digesting/getting any nutrients from what she was eating. She was finally diagnosed with CF at age 3, at which point she was neither a happy nor energetic child.

I would just make sure that you get the sweat test done somewhere that knows what they are doing. It certainly doesn't hurt to try to rule out CF and I personally think your GI is doing the right thing. Best of luck and let us know how it goes.
 
K

ktsmom

New member
Our daughter presented only with GI issues but her growth chart percentiles were <i>falling</i>, not maintaining at a steady (albeit low) percentile. There is a difference. Also, she was constantly hungry and her BM's were bulky and greasy (sorry TMI) and lots of tummy distension, pain. All symptoms of her not digesting/getting any nutrients from what she was eating. She was finally diagnosed with CF at age 3, at which point she was neither a happy nor energetic child.
<br />
<br />I would just make sure that you get the sweat test done somewhere that knows what they are doing. It certainly doesn't hurt to try to rule out CF and I personally think your GI is doing the right thing. Best of luck and let us know how it goes.
 
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