Are these signs of CF?

ebaron85

New member
Hi everyone I am new here. I have a 20 month old son who is failure to thrive and low birth weight. When he was a few months old his pedi did a sweat test on him and it came back negative for CF. Well since then he has been having trouble gaining weight. Just recently he has been dipping off the weight chart (he is at 3% for weight and 10% for height) I have to go back in two weeks for a weight check and they put him on Pediasure. He has had bronchitis, ear infections, colds, and twice he has had croup since he has been born. And just yesterday he has been having loose stools, and when we change him his stools smell really bad like burnt rubber (it is a very weird smell.) Does anyone here think that, this may warrant further testing for CF?
 

ebaron85

New member
Hi everyone I am new here. I have a 20 month old son who is failure to thrive and low birth weight. When he was a few months old his pedi did a sweat test on him and it came back negative for CF. Well since then he has been having trouble gaining weight. Just recently he has been dipping off the weight chart (he is at 3% for weight and 10% for height) I have to go back in two weeks for a weight check and they put him on Pediasure. He has had bronchitis, ear infections, colds, and twice he has had croup since he has been born. And just yesterday he has been having loose stools, and when we change him his stools smell really bad like burnt rubber (it is a very weird smell.) Does anyone here think that, this may warrant further testing for CF?
 

ebaron85

New member
Hi everyone I am new here. I have a 20 month old son who is failure to thrive and low birth weight. When he was a few months old his pedi did a sweat test on him and it came back negative for CF. Well since then he has been having trouble gaining weight. Just recently he has been dipping off the weight chart (he is at 3% for weight and 10% for height) I have to go back in two weeks for a weight check and they put him on Pediasure. He has had bronchitis, ear infections, colds, and twice he has had croup since he has been born. And just yesterday he has been having loose stools, and when we change him his stools smell really bad like burnt rubber (it is a very weird smell.) Does anyone here think that, this may warrant further testing for CF?
 

Ratatosk

Administrator
Staff member
I would say yes. Also, it's my understanding that sweat tests should be done at an accreditted CF facility.

Do you know what the test results indicated. DS was tested as a baby and his came back as a normal 32; however, genetic blood tests indicated he had CF.
 

Ratatosk

Administrator
Staff member
I would say yes. Also, it's my understanding that sweat tests should be done at an accreditted CF facility.

Do you know what the test results indicated. DS was tested as a baby and his came back as a normal 32; however, genetic blood tests indicated he had CF.
 

Ratatosk

Administrator
Staff member
I would say yes. Also, it's my understanding that sweat tests should be done at an accreditted CF facility.
<br />
<br />Do you know what the test results indicated. DS was tested as a baby and his came back as a normal 32; however, genetic blood tests indicated he had CF.
 

ebaron85

New member
I'm not sure what the results were they never told me, just that it was negative. I have to go back in two weeks so if he hasn't gained anything by then, I am going to ask for more testing. His weight really has me worried, and especially with these weird symptoms he has been having <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ebaron85

New member
I'm not sure what the results were they never told me, just that it was negative. I have to go back in two weeks so if he hasn't gained anything by then, I am going to ask for more testing. His weight really has me worried, and especially with these weird symptoms he has been having <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ebaron85

New member
I'm not sure what the results were they never told me, just that it was negative. I have to go back in two weeks so if he hasn't gained anything by then, I am going to ask for more testing. His weight really has me worried, and especially with these weird symptoms he has been having <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

peter

New member
Welcome to the site. It is an outstanding place to get up to speed on CF and many people will come on to give advice from their knowledge and vast experiences. Has your son had a genetic test panel? If sweat test was inaccurate the genetic panel would seem a logical "medically necessary" test because of the other symptoms. Maybe your pediatrician doesn't know much about cf, or doesn't know he/she doesn't know, and needs some guidance. Send the doctor here for some "in-servicing". Definitely get a panel test for CF.
Good luck.
Peter
 

peter

New member
Welcome to the site. It is an outstanding place to get up to speed on CF and many people will come on to give advice from their knowledge and vast experiences. Has your son had a genetic test panel? If sweat test was inaccurate the genetic panel would seem a logical "medically necessary" test because of the other symptoms. Maybe your pediatrician doesn't know much about cf, or doesn't know he/she doesn't know, and needs some guidance. Send the doctor here for some "in-servicing". Definitely get a panel test for CF.
Good luck.
Peter
 

peter

New member
Welcome to the site. It is an outstanding place to get up to speed on CF and many people will come on to give advice from their knowledge and vast experiences. Has your son had a genetic test panel? If sweat test was inaccurate the genetic panel would seem a logical "medically necessary" test because of the other symptoms. Maybe your pediatrician doesn't know much about cf, or doesn't know he/she doesn't know, and needs some guidance. Send the doctor here for some "in-servicing". Definitely get a panel test for CF.
<br />Good luck.
<br />Peter
 

ebaron85

New member
Thanks for the replies! The only test he has had done was the sweat test and it came up negative and the pedi never mentioned anything after that. So i will probably ask them about the genetic panel test. My family has no history of CF so I dont know how likely it will be that he has CF.
 

ebaron85

New member
Thanks for the replies! The only test he has had done was the sweat test and it came up negative and the pedi never mentioned anything after that. So i will probably ask them about the genetic panel test. My family has no history of CF so I dont know how likely it will be that he has CF.
 

ebaron85

New member
Thanks for the replies! The only test he has had done was the sweat test and it came up negative and the pedi never mentioned anything after that. So i will probably ask them about the genetic panel test. My family has no history of CF so I dont know how likely it will be that he has CF.
 

Ratatosk

Administrator
Staff member
There are a number of us on here we absolutely no family history. I would push for answers, to rule out CF, to find out what is causing his issues.
 

Ratatosk

Administrator
Staff member
There are a number of us on here we absolutely no family history. I would push for answers, to rule out CF, to find out what is causing his issues.
 

Ratatosk

Administrator
Staff member
There are a number of us on here we absolutely no family history. I would push for answers, to rule out CF, to find out what is causing his issues.
 
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