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Newby - don't know how to help my son

My son now aged 13 was under GOS hospital for a number of years. He was tested for crohn's which came back negative, however he suffers with awful uclers in his mouth. They are not your average ulcer they measure up to 1cm and he usually gets a few at a time. GOS put him on 'pentasa' for a while and he has had a couple of endoscopies and colonoscopies. These show his colon and intestines to be clear. So we were discharged from GOS care. The flare-ups he gets with his uclers are now treated by our doctor who perscibes steriods. My sons bottom lip is so swollen that the steriods are the only thing which seems to bring down the swelling but I am nervious about the slide effects the tablets may have on my son. No one seems to know why my sons gets these flare-ups and we just get told he will grow out of it!!!!!
 
Hi and sorry you have to be here.
I forgot where I read on this forum, but it was talking about crohn's of the LIPS.
Yes you can have it there.
Does your son suffer anything else?
Sore joints, skin rashes, pains else where?

We have a wonderful parents forum. Please feel free to join.
 

David

Co-Founder
Location
Naples, Florida
Hi gcmunro and welcome.

Try having him brush his teeth with a mix of baking soda, salt, and peppermint oil (for flavor) rather than his normal toothpaste for awhile. There's additives in most toothpastes these days that really set some people off.

It's worth a try :)
 
It sounds like a food allergy, but, who knows, they do say Crohn's can affect the mouth. I would try eating only whole, unprocessed foods or only one whole food for a couple days to see if there is a difference, then slowly add others. Like an elimination diet if you didn't try this already.

I would particulary avoid soy and corn, being GMO--yes, I'm going there.
The mayo clinic actually lists swollen lips as soy allergy symptom. http://www.mayoclinic.com/health/soy-allergy/DS00970/DSECTION=symptoms

Soy is in nearly everything processed, like boxed foods, in the States as lecithin or protein. Not sure if GMO soy is very prevalent in the UK, but I would at least try avoiding soy in general for a week or two. Like David said, this too is worth a try. Good luck.
 

DustyKat

Super Moderator
Hi gcmunro and :welcome:

I'm sorry to hear about your lad and what he going through...:hug:

Farmwife is correct, there have been a few threads on here about swollen lips and Crohn's, this is one...

http://www.crohnsforum.com/showthread.php?t=30708

What were his symptoms that they tested him for Crohn's?

As scopes only visualise a very small amount of the small bowel did he have any imaging done of this area...Scans, pill cam, ultrasound?

Some time before my son diagnosed he suffered with mouth ulcers, not to the extent of your son though, and on doing much research I settled on treating him with B Complex tablets. In his case it worked very well. Perhaps this coupled with David's suggestion may be helpful.

Good luck and welcome aboard!

Dusty. xxx
 
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