Help my 5 year old

[Brittanyrogers52]

I’m wondering if someone can explain to me in detail what these biopsy’s are saying and what could my 5 year old have Crohn's?

Stomach, antrum, endoscopic biopsy’s: oxytnic and antral mucosa with no significant pathological abnormality

Small intestine, duodenum biopsy’s: patchy chronic inflammation ,
focal villous blunting and crypt hyperplasia

Small intestine,ileum terminal biopsy’s: reactive Peyers patch

This has been the most frustrating, heartbreaking experience. My daughter has been sick since the end of December. First started out with fever and mouth sores, vomiting , stomach pain that lasted a whole month. Then it turned into a oral yeast infection. Random fever started coming back and the stomach pain never went away. She was then put on medication after medication. April 5th she finally went in for a egd and colonoscopy with biopsy’s because of her stool test coming back high at a 256. The night after her procedure she ran fever, the next day she couldn’t stop vomiting. Since the 5th she has been to the er 7 times total her belly pain has been so intense she is screaming in pain they had to give my 5 year old morphine for pain. They have done mri, ct scan, ultrasounds they thought it was her appendix because they couldn’t find it but later ruled appendicitis out . She can’t be a normal 5 year old she is always in constant pain with mouth sores and intense belly pain, at times she can’t even walk she complains of her legs being tired. Her gi specalist has been absolutely no help just told me her biopsy’s look fine and no treatment plan!!!!!!!! I was finally sent to a rheumatologist yesterday and she told me there is something seriously wrong, waiting for the blood results. We have history of Crohn's on my side of the family and my husbands side. Allergy testing has been done and she is completely allergy free, celiac panel has been ran and that came back fine as well. Now her iga level through the celiac panel has been high since she was two years old. I just have a really good feeling this is Crohn's

 

[my little penguin]

Have they looked at bechets ?
It can mimic Crohns and have “different “ inflammation but cause lots of issues including fevers
Periodic fever disorders can cause similar issue
I wouldn’t get stuck on one dx though
Sounds like you gave a good rheumatologist
They handle bechets and periodic fevers

Juvenile spondyloarthritis can cause GI issues as well

http://www.autoinflammatory-search.org

 

[Maya142]

Her biopsies show inflammation - including chronic inflammation. Can you get a second opinion??

Also did your GI do an MRE or a pillcam to look at her small bowel? I know you said an MRI but that's not as good as an MRE. The scope can only see the first and last bits of the small bowel - there is a whole lot it cannot reach.

I'm kind of surprised she was not diagnosed already, to be honest. I would get a second opinion and see if they can figure out what is going on.

Important
diagnostic microscopic features of CD are architectural
abnormalities of the villi (irregularity and blunting or
broadening), preserved mucin secretion or increased
mucin production (hypercrinia) by epithelial cells,
mucoid or pseudopyloric metaplasia, active chronic
inflammation and the presence of granulomas

Microscopic features with sufficient
reproducibility, discriminative and predictive
value, useful for the differential diagnosis
between normal and IBD, acute infectious
colitis (AIC) and IBD and CD, and UC

Mucosal architecture
Mucosal surface, normal, irregular, villous
Crypt atrophy (shortened, widely spaced crypts)
Distorted, dilated, branching crypts
Inflammatory changes
Basal plasmacytosis, increase in cells in basal third of lamina
propria
Increased lamina propria cellularity (round cells and
neutrophils)
Basal lymphoid aggregates
Specific features
Epithelioid granuloma
Basal giant cells
Excess histiocytes in lamina propria
Features related with activity (separating IBD from normal)
Neutrophils in surface epithelium
Neutrophils in

http://www.med-info.nl/literatuur/Crohn_CU_IBS.pdf

 

[Brittanyrogers52]

Have they looked at bechets ?
It can mimic Crohns and have “different “ inflammation but cause lots of issues including fevers
Periodic fever disorders can cause similar issue
I wouldn’t get stuck on one dx though
Sounds like you gave a good rheumatologist
They handle bechets and periodic fevers

Juvenile spondyloarthritis can cause GI issues as well

http://www.autoinflammatory-search.org

Thank you so much I’m looking into everything you said now

 

[Brittanyrogers52]

Her biopsies show inflammation - including chronic inflammation. Can you get a second opinion??

Also did your GI do an MRE or a pillcam to look at her small bowel? I know you said an MRI but that's not as good as an MRE. The scope can only see the first and last bits of the small bowel - there is a whole lot it cannot reach.

I'm kind of surprised she was not diagnosed already, to be honest. I would get a second opinion and see if they can figure out what is going on.

Exactly! It has been so frustrating I have been in tears I wish I could post a video here so you can see how intense her pain is daily. The gi she has seen has been absolutely horrible to us he was so sure there was nothing wrong I had to fight him to even do the stool test. And like i said it was going to come back abnormal. He then ordered the colonoscopy and egd with biopsy’s. When the biopsy’s came back in he told me there is no treatment plan and her biopsy’s are very reassuring with nothing wrong! May 17th she is seeing a new GI doctor for a second opinion more testing like you said needs to be done.

 

[Maya142]

I'm SO glad she is seeing someone new. Poor kiddo, I'm sorry to hear she is in so much pain .

I'm going to tag some parents and am hoping they will have more ideas/thoughts on the biopsies:
crohnsinct
Pilgrim
pdx
Tesscorm
Farmwife

 

[xmdmom]

I can't say what's going on with your child but focal villous blunting and crypt hyperplasia are seen in Celiac disease. Was your child on a diet containing gluten when the celiac test was done? Also 10% of people with Celiac apparently have negative blood tests.

The biopsy is not normal so I'm not sure how your doctor says it's fine. What was the pathologist's conclusion?

I'm sorry you and your child are dealing with this! Hoping you get answers soon.


See below from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861744/
Box 1 Summary of major features of mucosa suggestive of coeliac disease
Proximal small bowel involvement, decreasing distally
Patchy distribution, in some cases
Mucosal architectural changes, including
-
Villous atrophy
-
Crypt hyperplasia
-
.....


Also https://celiac.org/celiac-disease/u...isease-2/diagnosing-celiac-disease/diagnosis/

 

[pdx]

I'm so sorry that your daughter is in so much pain. I don't have any good advice for you, except to say that I'm glad that you're seeing a rheumatologist and that you're getting a second opinion. Really hope that you get some answers soon.

 

[Carolina*]

I would definitely get a second opinion like the others have said and fyi my daughter has Celiac Disease and her biospy reads "diffuse villous blunting" and she has chronic patchy inflammation in the large intestine from IBD. Has she been tested for Celiac, the villi blunting and crypt hyperplasia are seen in Celiac?

 

[Farmwife]

Yes, second opinion.
It's quiet shocking that he'd overlook such details.
Celiac can do damage if not treated, not just ibd.
Hopefully this new gi will help.