u/klc1030

Hi all. For the past my month my son had been experiencing very greasy smelly stool after a day of diarrhea. It originally started just yellow and smelly, then we started noticing a shiny sheen on his bottom (he’s almost 3), and then we noticed it starting to look yellow/orange when he pooped, with mucus and undigested food. He’s 2 years 9
Months, currently 34.6 lbs but was 36 or 37 lbs a few weeks ago before this started, and he’s 3 ft 2 in height. Not on any current meds and no known health issues.

We had some bloodwork done which came back unremarkable, CBC and calpro good, celiac negative, but the fecal elastase came back 0. The pediatrician obviously described how severe this is and how he’s being referred to a GI who we saw today.

She basically could provide me no comfort bc the spectrum of possibilities is so large. She mentioned CF, syndromes and how they can affect life expectancy and I have been losing my mind. He is an ivf baby and my husband and I both had genetic testing done that ruled out if we were CF carriers but apparently there are more strains possibly not tested.

I asked the pediatrician for more pancreas bloodwork and a repeat stool as the first samples were mushy/oily and not formed. This sample was also mushy and oily and somehow came back as 0 also. She keeps insisting unless it was straight diarrhea it’s accurate. Amylase and liapse in normal range.

Now his GI is having us do CF testing, genetic syndrome testing, ultrasound imaging, vitamin panel and I am so terrified right now. She also is saying she’s never seen 0 before and I’m wondering if it’s somehow lab error. I’m scared bc all his bloods look good and besides the greasy stool and hunger and now a little weight loss he’s full of energy and eating normally and feeling good. He had an abdominal ultrasound today and the tech said everything looked great and no concerns structurally.

I am sick to my stomach with worry and I am having a hard time waiting in the unknown. Has anyone had or seen a result like that and it ended up being something treatable or temporary? Can mushy oily stool cause an inconclusive elastase result unlike what his pediatrician is claiming? I am so confused how it is 0 when he’s doing well besides the stool. She’s like insisting it’s normal if the sample wasn’t pure diarrhea. ALSO - these were collected from a diaper which I’m now seeing can absorb elastase possibly? No one at the lab and none of the doctors are seeming to take the mushy consistency or diaper into consideration and just accepting the 0 elastase bc it was in two results. He’s not in pain and playing and happy. I am
Literally seeing nothing online of anyone having 0 elastase. They sent out a prescription for PERT which pharmacy says will be ready tomorrow :(

Hi all. For the past my month my son had been experiencing very greasy smelly stool after a day of diarrhea. It originally started just yellow and smelly, then we started noticing a shiny sheen on his bottom (he’s almost 3), and then we noticed it starting to look yellow/orange when he pooped, with mucus and undigested food.

We had some bloodwork done which came back unremarkable, CBC and calpro good, celiac negative, but the fecal elastase came back 0. The pediatrician obviously described how severe this is and how he’s being referred to a GI who we saw today.

She basically could provide me no comfort bc the spectrum of possibilities is so large. She mentioned CF, syndromes and how they can affect life expectancy and I have been losing my mind. He is an ivf baby and my husband and I both had genetic testing done that ruled out if we were CF carriers but apparently there are more strains possibly not tested.

I asked the pediatrician for more pancreas bloodwork and a repeat stool as the first samples were mushy/oily and not formed. This sample was also mushy and oily and somehow came back as 0 also. She keeps insisting unless it was straight diarrhea it’s accurate. Amylase and liapse in normal range.

Now his GI is having us do CF testing, genetic syndrome testing, ultrasound imaging, vitamin panel and I am so terrified right now. She also is saying she’s never seen 0 before and I’m wondering if it’s somehow lab error. I’m scared bc all his bloods look good and besides the greasy stool and hunger and now a little weight loss he’s full of energy and eating normally and feeling good.

I am sick to my stomach with worry and I am having a hard time waiting in the unknown. Has anyone had a result like that and it ended up being something treatable or temporary? Can mushy oily stool cause an inconclusive elastase result unlike what his pediatrician is claiming? I am so confused how it is 0 when he’s doing well besides the stool. He’s not in pain and playing and happy. I am
Literally seeing nothing online of anyone having 0 elastase.

Hi all. For the past my month my son had been experiencing very greasy smelly stool after a day of diarrhea. It originally started just yellow and smelly, then we started noticing a shiny sheen on his bottom (he’s almost 3), and then we noticed it starting to look yellow/orange when he pooped, with mucus and undigested food.

We had some bloodwork done which came back unremarkable, CBC and calpro good, celiac negative, but the fecal elastase came back 0. The pediatrician obviously described how severe this is and how he’s being referred to a GI who we saw today.

She basically could provide me no comfort bc the spectrum of possibilities is so large. She mentioned CF, syndromes and how they can affect life expectancy and I have been losing my mind. He is an ivf baby and my husband and I both had genetic testing done that ruled out if we were CF carriers but apparently there are more strains possibly not tested.

I asked the pediatrician for more pancreas bloodwork and a repeat stool as the first samples were mushy/oily and not formed. This sample was also mushy and oily and somehow came back as 0 also. She keeps insisting unless it was straight diarrhea it’s accurate. Amylase and liapse in normal range.

Now his GI is having us do CF testing, genetic syndrome testing, ultrasound imaging, vitamin panel and I am so terrified right now. She also is saying she’s never seen 0 before and I’m wondering if it’s somehow lab error. I’m scared bc all his bloods look good and besides the greasy stool and hunger and now a little weight loss he’s full of energy and eating normally and feeling good.

I am sick to my stomach with worry and I am having a hard time waiting in the unknown. Has anyone had a result like that and it ended up being something treatable or temporary? Can mushy oily stool cause an inconclusive elastase result unlike what his pediatrician is claiming? I am so confused how it is 0 when he’s doing well besides the stool. He’s not in pain and playing and happy. I am
Literally seeing nothing online of anyone having 0 elastase.

Hi all. For the past my month my son had been experiencing very greasy smelly stool after a day of diarrhea. It originally started just yellow and smelly, then we started noticing a shiny sheen on his bottom (he’s almost 3), and then we noticed it starting to look yellow/orange when he pooped, with mucus and undigested food.

We had some bloodwork done which came back unremarkable but the fecal elastase came back 0. The pediatrician obviously described how severe this is and how he’s being referred to a GI who of course can’t see him for 3 days. I even called Children’s Hospital Philly bc I’m freaking out.

She basically could provide me no comfort bc the spectrum of possibilities is so large. She mentioned CF, syndromes and how they can affect life expectancy and I have been losing my mind. He is an ivf baby and my husband and I both had genetic testing done that ruled out if we were CF carriers but apparently there are more strains possibly not tested.

I asked the pediatrician for my pancreas bloodwork and a repeat stool and we just left the lab testing liapse and amylase and just waiting for another BM to drop off.

I am sick to my stomach with worry and I am having a hard time waiting in the unknown. Has anyone had a result like that and it ended up being something treatable? I am so confused how it is 0 when he’s doing well besides the stool. He’s not in pain and playing and happy, but he has been insatiably hungry :(