Update and a question...

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lvisser

New member
See OP below "symptoms in a 2 month old"...

E had his sweat test and got a 13... we met with another doctor today who is going to run a test on his pancreas, since his poops are still very clay like, stinky and just plain nasty.
Now, is it possible for him to still have cf, but have it manifest in a issue with his pancreas and pass the sweat test?
i mentioned the ambry testing to the ped and she said it was somethign to look into...
TIA...
 
L

lvisser

New member
See OP below "symptoms in a 2 month old"...

E had his sweat test and got a 13... we met with another doctor today who is going to run a test on his pancreas, since his poops are still very clay like, stinky and just plain nasty.
Now, is it possible for him to still have cf, but have it manifest in a issue with his pancreas and pass the sweat test?
i mentioned the ambry testing to the ped and she said it was somethign to look into...
TIA...
 
L

lvisser

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> She dosen't know what an AMBRT TEST is.</end quote>
yeah... basically, i think she took the sweat test as the holy grail..
 
L

lvisser

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> She dosen't know what an AMBRT TEST is.</end quote>
yeah... basically, i think she took the sweat test as the holy grail..
 
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CJPsMom

New member
THe answer to your question is yes. There are lots of people here who had that exact same experience. I'm pretty sure I saw you on the special needs board on The Bump - there are a couple of people there who passed the sweat test and still have CF.
We didn't have to worry about that, but it is not definitive and it is not a clinical diagnosis or the elimination of a clinical diagnosis. Get the full genetic sequencing - don't wait for her to look into it. *sigh*
And, go to a CF Center, they'll know what it is!
 
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CJPsMom

New member
THe answer to your question is yes. There are lots of people here who had that exact same experience. I'm pretty sure I saw you on the special needs board on The Bump - there are a couple of people there who passed the sweat test and still have CF.
We didn't have to worry about that, but it is not definitive and it is not a clinical diagnosis or the elimination of a clinical diagnosis. Get the full genetic sequencing - don't wait for her to look into it. *sigh*
And, go to a CF Center, they'll know what it is!
 
P

Printer

Active member
CJPsMom is correct. There are too many non CF Doctors who don't have a clue as to CF. Immediatly go to an APPROVED CF CENTER.

Good luck,
Bill
 
P

Printer

Active member
CJPsMom is correct. There are too many non CF Doctors who don't have a clue as to CF. Immediatly go to an APPROVED CF CENTER.

Good luck,
Bill
 
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BikerEd

Guest
Yes time to at least look into a more educated Dr. "Something to look into" is code for I have no clue what your talking about, let me read up on it. Bill is correct find a Dr familiar with CF, your ins may require a referral prior to getting an appetite at a cftr. And yes you can have mostly GI problems with mimimal lung involvement and still be CF..

Best of luck
 
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BikerEd

Guest
Yes time to at least look into a more educated Dr. "Something to look into" is code for I have no clue what your talking about, let me read up on it. Bill is correct find a Dr familiar with CF, your ins may require a referral prior to getting an appetite at a cftr. And yes you can have mostly GI problems with mimimal lung involvement and still be CF..

Best of luck
 
S

sanfloraine

Guest
We have the same problem: a baby with a negative sweat test and pancreatic problems. My 21 months old son has had terrible diarrhea since July, it started after I stopped breastfeeding. His first 16 months, he barely smiled, we always suspected he was in pain though we did not know what could be wrong.

We now know he has pancreatic problems, his fecal elastase test was 148 = moderately PI, he his now taking enzymes.

He also had a genetic test with 32 mutations that was negative. We saw a CF doctor that said: can't be CF! I am relieved but not completely convinced, he is also always congested (she said: it's cat allergies)... which is why we did the full genetic sequencing and are waiting for the results. Our insurance should cover most of it.
 
S

sanfloraine

Guest
We have the same problem: a baby with a negative sweat test and pancreatic problems. My 21 months old son has had terrible diarrhea since July, it started after I stopped breastfeeding. His first 16 months, he barely smiled, we always suspected he was in pain though we did not know what could be wrong.

We now know he has pancreatic problems, his fecal elastase test was 148 = moderately PI, he his now taking enzymes.

He also had a genetic test with 32 mutations that was negative. We saw a CF doctor that said: can't be CF! I am relieved but not completely convinced, he is also always congested (she said: it's cat allergies)... which is why we did the full genetic sequencing and are waiting for the results. Our insurance should cover most of it.
 
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