Oral Crohn's

[jadegreen]

Can anyone talk to me about oral Crohn's disease? My oldest son has two ugly ulcers in his mouth and yesterday a piece of his lower, front gum peeled right off revealing part of the adult tooth below the gum line!

His dentist keeps saying he needs to brush better/more, but he does brush every day, and sometimes I step in and take a turn; and we see her about every 6 mos for cleaning. I just can't buy this is a hygiene problem. His mouth is a mess. What do you think?

My oldest son has EOE, btw.

 

[Pangolin]

Does he have Crohn’s in other places? Is it under control there? What medicines is he on?

Eosinophilic esophagitis can be a complication of some biologics.

 

[my little penguin]

EoE is thought by some to be a pre cursor of crohns
That said -see a dermatologist
They can tell you the type of ulcers
They can biopsy of needed and determine if it’s crohns

EoE is treated with dietary exclusion for most
But some also use swallows steroids
If your child is using swallowed steroids for a long time that may be affecting his mouth
Additional it could be an entirely different disease
My kiddo has crohns
But mouth ulcers and skin lesions plus other stuff was from an auto inflammatory condition (Sweets syndrome )

see a dermatologist first

 

[my little penguin]

@Pangolin -the poster has a crohns dx
Not her child

 

[jadegreen]

Thanks guys; correct, my son is dx with EOE and I'm dx with Crohn's.

My son's EOE has been managed with diet up to this point. I've really tried to avoid drugs, if possible. I'm not sure how much longer we can avoid tho.

I'm just at my wit's end with his dental problems (they have been many) and very irritated w/ his dentist implying that we are not doing enough. Could my son's GI do an oral biopsy and/or swab you think? My son is having an endoscopy done this fall.

I'm probably going to call his GI tomorrow anyway. I couldn't get through the last two times I called. I'm just having anxiety. I just don't know where these health problems will ever end.

 

[jadegreen]

I guess I'm also a bit surprised at the dermatologist suggestion. I didn't know they do mouth things?

 

[my little penguin]

Derm would be the one to do any skin biopsy including the mouth .
If he is on a large amount of formula due to EoE then that can affect the mouth as well

I would ask other parents of EoE kids (parents of kids with food allergies has a good section on EoE )

I do know my kiddos gums are always inflamed
/ulcers
Less so since being on the second biologic for Sweets
My non ibd kiddo does nothing brush nearly as often and gets perfect scores at the dentist

so in my ibd kids case it’s inflamed system

 

[jadegreen]

I was afraid it could be an inflamed system issue. I am also in an EOE forum, so I will ask there too, I just haven't seen it come up there and I knew that Crohn's of the mouth was a thing.

My second son has some suspected GI issues, and he has poor teeth as well, but nothing so bad as my first.

 

[my little penguin]

Bechets can also start out as really bad mouth ulcers and progress from there
It’s another neutrophilic dermatosis disorder on the other end of the spectrum as is Sweets syndrome (acute febrile neutrophilic dermatosis)

 

[jadegreen]

Okay, I'm going to look those up

 

[jadegreen]

Well, it could be something like Sweets; looks like it can be brought on/made worse through illness and we are recovering from COVID at the moment.

 

[jadegreen]

He just doesn't seem to have any lesions other than his mouth, tho, and this says there are usu skin lesions present. I dunno. We will figure it out.

 

[my little penguin]

It’s tough when you only get a few clues at a time
I know for my kiddo it took years unfortunately to connect the dots on the sweets syndrome
Now that look back on pics it’s obvious but then we knew had Crohn’s and thought the other stuff was just extra weird things that all docs weren’t concerned about
Flushing tiny rashes etc…

hopefully you will figureit out soon