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03-31-2017, 02:33 PM   #1
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
Semi diagnosed

Our consultant said our 4 yr old has inflammation of esophagus following ends copy and colons copy. We are due to have a ultrasound because they couldn't view one side of the bowel. She has had consistent high calprotection levels of over 600, they don't record if higher? Has a poor appetite, and slow to gain weight. Has tummy pains, and often consipat ed than diorehroa. ...we haven't had a diagnoses as we are waiting for a diagnosis. Does this sound like crohns or GERD????
03-31-2017, 04:21 PM   #2
Maya142
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Some kids do have constipation with Crohn's - my daughter is one of them. It really varies - there is honestly no "normal." Some kids have diarrhea and bleeding, others have constipation and others don't have any symptoms at all. Some kids are only scoped because they stop growing.

It depends on the lab, but most will show Calprotectin much higher than 600 - over 1000 usually. But honestly it varies. At most labs, under 169 or 50 is normal. I know the cut off is a bit higher for younger kids, but I am not sure what it is. However, 600 is definitely high.

Hang in there - hopefully the ultrasound will give you more info. Were biopsies done when she had scopes?
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
03-31-2017, 04:25 PM   #3
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
Hi, thanks for your reply. She had biopsy that showed inflammation of the esophagus. They are doing ultrasound because couldn't see the left side of the bowel when doing edscopy....not sure what scopes are? She had cameras and biopsy
03-31-2017, 04:28 PM   #4
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
In the UK our labs don't reord once levels are above 600, which is annoying
03-31-2017, 04:46 PM   #5
Maya142
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By scopes, I mean an endoscopy and colonoscopy - sorry. Sometimes the biopsies taken will give you enough info for a Crohn's diagnosis but typically you have to have granulomas on biopsy for that to happen (and only 30% of Crohn's patients have them - so it's really silly).

An endoscopy and a colonoscopy can't see middle of the small bowel so usually an MRE or pillcam are done to make sure there is no disease there. Sometimes a SBFT is done, but that's an older test.

I'm not sure what they mean by left side of the bowel though.
03-31-2017, 05:03 PM   #6
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
By scopes, I mean an endoscopy and colonoscopy - sorry. Sometimes the biopsies taken will give you enough info for a Crohn's diagnosis but typically you have to have granulomas on biopsy for that to happen (and only 30% of Crohn's patients have them - so it's really silly).

An endoscopy and a colonoscopy can't see middle of the small bowel so usually an MRE or pillcam are done to make sure there is no disease there. Sometimes a SBFT is done, but that's an older test.

I'm not sure what they mean by left side of the bowel though.

She's 4 years old. Would they do that on a toddler? They didn't say anything about testing. I feel so naiave, I don't know if procedure's are different in UK, I assume you're USA?
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