Mouth/Tongue sores?

[Farran7]

My 11 year old son (dx 7/10) began complaining of pain on his tongue Friday night...he says there are little cuts all over the sides of his tongue and that it burns and hurts when he eats or drinks anything....I do not see anything when I look at his tongue but he is clearly in pain....anyone experience this at all....I did notice that his angular chelitis is coming back in the corners of his mouth....but no other GI symptoms are presenting??? Is this a flare or unrelated to Crohn's disease?

Concerned.....not sure what to do?

Farran7
Son dx with Crohn's disease 7/10
currently only taking 2 Apriso daily
Caltrate
multivitamin
pediasure supplements

 

[Tesscorm]

Prior to being diagnosed, my son complained of canker sores in his mouth (not his tongue though). I know canker sores can be a symptom of a flare, as in my son's case, but I don't know if that's always the case. I would keep an eye out for other symptoms. :ghug:

 

[Farran7]

I suppose I should mention that up until now....he has been doing fantastic on the Apriso....eating and growing (finally!).....we have been very blessed that he has been so healthy.....just concerned that this could be his first flare since being medicated....and not sure at what point I should contact his GI or question his current treatment plan.....

Farran7

 

[Devynnsmom]

Hi Farran,
My 11 year old gets horribly painful mouth ulcers in her mouth and tongue when she is in a flare. I hope your son feels better soon.

 

[Patricia56]

Not a doctor but it sounds like he is flaring.

Mouth sores are common during flares as is angular chelitis which is an inflammatory condition.

Apriso is a 5ASA medication. It has very limited ability to maintain remission but I expect because of your son's age and the fact that he appeared to be OK on that alone his ped GI left him on that.

I think you need to get him in for some labs ASAP and to the GI.

There are topical sprays that will numb the mouth but they taste nasty and a numb mouth is not necessarily that big an improvement over one that hurts. Plus you are likely to bite yourself while you're numb (speaking from personal experience).

Sometimes rinsing with various solutions will help. I would call his pediatrician's office and see if they have any suggestions since they probably deal with this kind of issue regularly.

Final thought is that you could start him on enteral nutrition right now. No solid food, just formula.

I would be concerned that he is going to stop eating due to the mouth pain or only want to eat one food group like pasta. Formula would get him complete nutrition. If you did it exclusively it might also calm his gut down so he didn't have step up to 6-MP which would be the next level of medical intervention.

I'm sorry. Hope he gets feeling better soon.

 

[Sascot]

Sorry I have no experience with mouth ulcers. I hope he isn't flaring. Is there any chance he has just eaten something that has irritated his mouth?

 

[Farran7]

Sascot....it is possible that he ate something that irritated his mouth as he does have food allergies and sensitivities as well.....I am trying not to overreact at this time.....but being that he has been doing so great for nearly a year and a half on Apriso alone....and then suddenly has the angular chelitis again with these sores is concerning me.....I suffer from not knowing when to act and when I am overreacting because I so badly want to do the right thing for him...he is such an amazing kiddo and I think I am in a bit of denial about him only needing the Apriso for the long run.....it was an easier decision at the time with so few symptoms presenting.....I think I will call the ped GI in the morning and talk with them.....it is so hard because we were just there in August and of course all of his bloodwork was perfect.

Farran7

 

[Patricia56]

It's always like that isn't it? You were just there and Bam, now everything has changed. It can make your head spin.

Frankly with a little one it's better to over react than under react.

They are not very good at telling us what's wrong, how they feel, how long they've been feeling that way, etc. Often, by the time they tell us or we notice something's wrong it's been going on for a while or there's a lot more going on than the one thing we know about.

So I think that it is better to take action early to determine whether these are symptoms of a flare than to wait until it is plain one way or the other. And I think it is perfectly fine to put the judgment about that in the hands of the expert you have hired to provide specialized care to your child - your ped GI. But he can't do that if you don't call him.

If this is a sign that he is starting to flare, you may have discovered your canary in a coal mine early warning system. When he gets these symptoms you will know that he is starting to flare and what to do.

Keep us posted. You're doing a great job.

 

[izzi'smom]

I was under the impression that dd's mouth sores were part of her Crohns...until her friends mom texted me and said her dd had it also (in retrospect, her brother had it first-I thought he was teething). It was Coxsackie. OOPS. At any rate, magic mouthwash (prescribed by our doc) helped immensely...it made eating/drinking possible. Hoping he's doing better soon!!

 

[kimmidwife]

Farran
I have to agree with Patricia. It is definitly better to be cautious and have him checked out. Mouth sores can be a sign of a flare. Like Patricia said 5 Asa medications are usually not so good at maintaining remission in kids with Crohn's disease.
I would definitly take him in and get him seen.

 

[Patricia56]

If it were only mouth sores I would say go to his pediatrician.

Adding the angular chelitis moves it clearly into the realm of Crohn's flare in my opinion.

 

[Jenn]

Definitely worth checking in with the pediatrician. My son had mouth sores while in flare too. In the meantime, magic mouthwash works great - 1 tsp liquid benadryl, 1 tsp maalox, swish and spit twice a day (do not swallow).

 

[Farran7]

Jenn...thank you so much for the magic mouthwash "recipe"....we will definitely give it a go while waiting for the Ped GI to return our call!

 

[jmckinley]

When it comes to Crohn's, August was like years ago. Definitely get some bloodwork done. That's not overly cautious. You mentioned that he was growing. A growth spurt can sometimes bring on a flare. He could need an adjustment in dosage.

Hugs and hopes for getting this under control!!

 

[DustyKat]

Since you have previous experience and symptoms to draw on, angular chelitis, I agree with starting down the track of having him investigated for a flare.

Have blood work done and ensure that they test B12, Iron and Folate.

Before I knew Matt had Crohn's he did suffer with mouth ulcers, not huge numbers but they were persistent. In hindsight I do believe they were an early symptom of his Crohn's. I did research quite a bit and settled on a B Complex supplement as a way of treating them. It certainly did the trick in his case and ironically even with all he went through months down the track they never did come back.

Good luck!

Dusty. xxx