Crohn's Disease Forum » Parents of Kids with IBD » Crohn's kid, mouth ulcer with cold

10-19-2018, 05:56 PM   #1
Join Date: Jun 2018
Location: Albany, New York
Crohn's kid, mouth ulcer with cold

So my teen son with Crohn's has been doing well with Remicade. He has been having a tough time with a cold though and is due for his next infusion next week. Today he showed me that he has a mouth sore. He would get them before diagnosis, whenever he had a virus. Later we found out that is a symptom of Crohn's.

He has had no Crohn's symptoms, no pain, no fever, normal stool. Just this bad cold for about a week. Could the sore just be from the virus and not be a flare?
10-19-2018, 10:20 PM   #2
Senior Member
Join Date: Mar 2012
Location: California

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Absolutely. I know it is hard for us not to jump to the Crohn's conclusion so one thing I try to remember is that many, many people get regular old mouth sores and they don't have Crohn's. If he has none of his other usual symptoms, I would record it somewhere and watch it. I might even just mention it to the nurses at infusion when they ask how things have been. When my daughters got their infusions at the medical center the infusion nurses were a great resource with what to be concerned with and what not to worry about. If he consistently gets these sores right before infusion it could be a sign that the Remade is not lasting the full interval and the interval may need to be shortened or the dose increased.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
10-19-2018, 10:49 PM   #3
my little penguin
Forum Monitor
Join Date: Apr 2012

My Support Groups:
For ds if itís a new thing thatís hasnít shown its face in a while
I send a quick note in the portal to GI
Note xyz on date such and such
No response needed just watching will update if itís seen again

That way GI is in the loop
Itís documented in the medical record for later when you and the GI canít remember when
If the GI is concerned they will contact you
If not crickets
DS - -Crohn's -Stelara -mtx
10-22-2018, 01:32 PM   #4
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Join Date: Apr 2010
Location: New York

My Support Groups:
I get cold sores, and sometimes mouth/nose sores (probably related tot he herpes simplex virus) fact I just had a cold sore heal up and it feels like I'm getting another already ugh.....

Get some ointment to use to help clear it up, and as long as it is healing nad not causing any other issues I'd make note of it (good idea to note month/day to see if a pattern develops) and give the doctor a jingle if it is really worrying you.

I keep Zovirax (anti viral) on hand - that helps heal sores up a lot quicker, even on/in my nose,,,those are the worst!

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-07-2018, 08:48 PM   #5
Join Date: Jun 2018
Location: Albany, New York
I really appreciate the help. He is still dealing with the cold! But the sores went away! I did mention it to the Dr/Nurse and they said what you all said, not to worry about it, likely from the cold.

FYI - I checked in on another issue in thread histories and you all are like encyclopedias...I didn't need to ask the question - you already answered it! This site is a great resource.

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