Crohn's Disease Forum » General IBD Discussion » Trying to get final IBD diagnosis for child?

10-22-2017, 01:27 PM   #1
Join Date: Oct 2017
Location: North Carolina
Trying to get final IBD diagnosis for child?

Hello all,

My 10yo daughter has been just diagnosed with IBD and i am hoping we will get to a definitive diagnosis this week. It's been a real roller coaster over the last week and I am so thankful for this forum. I have been researching and reading non-stop.

My daughter has had 3 rounds of diarrhea since last spring, 2 for sure including blood and unsure about the other. Initially she had just been tested for infection which were all negative. After her recent flare-up we got an appointment with a Pediatric GI quickly. The initial blood work came back as Celiac with 4 of 6 tests positive. I was educating myself on that diagnosis and then 2 days later she had her colonoscopy/endoscopy and things shifted a bit. Her GI said it is 100% IBD, favoring Crohn's but would know more after biopsy results, and he thinks the Ceilac was a false positive from IBD.

I was devastated hearing that and turned all my research to IBD. The biopsy is favoring Crohn's because (1) there is no active colitis in the hepatic and transverse colon and (2) mild acute terminal illeitis (no fissures, fistulas, granulomas, or dysplasia identified). HOWEVER, after talking to a dear friend with UC and reading, Pediatric cases can be atypical and not follow the "bottom up" pattern and it *could* be "backwash illeits. I asked her GI if this is true and he said yes. We started the appointment with it's Crohn's and then he said "75/25 or maybe 60/40 Crohn's". She has an MRI on Wednesday to better see the small intestine.

I want to be careful how I word things to not appear insensitive or like I am minimizing UC, but I am REALLY praying this ends up as UC and not Crohn's because it seems like that will come with a few less long-term challenges.

I had hoped with bloody stools and that she has been steady on her growth curve since birth (75% height) that those would be encouraging signs pointing more towards UC. She is very, very thin but it's never concerned me because she has a large appetite and I was also very thin as a kid.

I am not sure what I am asking exactly, but if anyone has anything to add that I should be thinking about I would love to hear it. I so appreciate anyone that took the time to read. Health and happiness to all!
10-22-2017, 01:35 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome . You should also try the section on here called Parents of Kids with ibd. I am going to tag Maya 142, my little penguin
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-22-2017, 01:39 PM   #3
Join Date: Oct 2017
Location: North Carolina
Welcome . You should also try the section on here called Parents of Kids with ibd. I am going to tag Maya 142, my little penguin
Thank you, I stewed for a couple minutes trying to decide which one to post in. haha!
10-22-2017, 02:26 PM   #4
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Maya142's Avatar
Hi and welcome!!
Like Ron said, definitely check out the Parents Forum.

To be honest, I'm not sure there is a "better form" of IBD - it really depends on the kid. Some kids have mild Crohn's that barely impacts their lives and other kids have severe UC that requires surgery. It is really a spectrum.

My daughter was diagnosed at 16 with Crohn's Disease. She had already been diagnosed with juvenile idiopathic arthritis several years earlier. Her only symptoms were abdominal pain and occasional constipation. Some weight loss. I honestly thought we were ruling out Crohn's. It was a huge shock to hear her GI say that she had Crohn's.

In her case, she had small ulcers through her colon and a red, inflamed and friable terminal ileum. Her biopsies showed granulomas which her GI said made her certain it was Crohn's. She did have inflammation and ulcers in her rectum which is unusual in Crohn's BUT after spending many years on this board, I can honestly say there is no "typical" form of this disease.

I think you should have more info once you have the MRE done. They also may want to do a pillcam.

It also may really help to get a second opinion. It really helped us, mostly because I just could not believe my daughter had Crohn's. A second set of eyes is always helpful, I've found.

Try not to panic too much - I know it is easier said than done. The first year is definitely a huge learning curve, but you will find your new normal.

There is lots of info and MANY great parents on the Parents Forum. I will tag some here -
my little penguin
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
10-22-2017, 03:02 PM   #5
my little penguin
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Join Date: Apr 2012

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I answered in your other thread here
DS - -Crohn's -Stelara -mtx

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