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Stubborn mouth Ulcers for first time

Brian'sMom

Brian'sMom

Location
Midwest
DS had ileostomy March 22. All meds stayed the same. Mid May his very first mouth ulcer appeared. Now today, he has around 12. There are 3 on his uvela. Now it makes it hard for him to eat... So off go the pounds again!! I googled them and saw in some places that MTX cause this... or the need to increase his folic acid. He takes 1mg a day as prescribed. Anyone have any thoughts? At my request his B12 was checked at his last appt June 11. It was normal. Fecal test came back 17 (small bowel only because of the bag). His iron was low but he's been taking 2 iron pills a day since June 11. He had 4 ulcers then... today he has 12. I have the magic mouthwash.. that only seems to just help numb for a bit. So frustrating. We just can't catch a break!!! :(

I wonder if the supplements he's taking aren't having enough time to absorb before they hit the bag. However when I've asked this they ask about his output. His output is low and thick...so that's good.
 
Maya142

Maya142

Moderator
Staff member
M had mouth ulcers that were from MTX and her rheumatologist increased the dose of folic acid and they went away.
Sorry no other ideas, your poor son! He really deserves a break:hug:!
 
Maya142

Maya142

Moderator
Staff member
MLP - how would you know if your kid had a B12 deficiency then, if they're always on folic acid?
 
Brian'sMom

Brian'sMom

Location
Midwest
MLP, That link had a member log in screen and I couldn't see the article. So is what your saying is that even tho his B12 came back normal the folic acid can give a wrong result?
 
Maya142

Maya142

Moderator
Staff member
Brian'sMom - Medscape is free, you just have to make an account.

This is the part of the article (the whole thing is too long to post):
Folic Acid Supplementation Masking B12 Deficiency

Folic acid works in conjunction with B12 for DNA synthesis. Folic acid deficiency causes macrocytic anemia but never neurologic deficits. Common causes of folic acid deficiency include poor diet and alcoholism. Since January 1998, the US Food and Drug Administration has required all enriched cereal/grain products to be fortified with folic acid, with the goal of reducing neural tube congenital defects.[10] Nutritionists have expressed concerns that folic acid fortification masks B12 deficiency, and a 2007 study demonstrated cognitive impairment in patients with high folate status in the presence of low B12. These patients were anemic without macrocytosis.[10] The authors suggest that excess folic acid precipitates both hematologic and neuropsychiatric manifestations of B12 deficiency. Interestingly, folic acid conferred cognitive protection in the presence of normal B12 levels. The point here is that folic acid supplementation in the presence of B12 deficiency may actually aggravate neurological symptoms.
Click to expand...
 
Catherine

Catherine

Moderator
Are you able to get the actually levels and ranges for both b12 and folate. If his b12 level is the low end of normal supplementing b12 may help.
 
Brian'sMom

Brian'sMom

Location
Midwest
Thanks so much to everyone! I love you all :) My team here are my WARRIORS!! I can't understand why the doctors didn't jump on this when he only had 2 ulcers. Then at appt a month later (June 11) he had more. And now, as of last night, he has a mouthful. He is trying so hard to get in his calories to gain weight because that is what they are upset with him about. He cried the other day. I don't blame him.
MLP...I have some of that prescription mouthwash. (It was for my older son after he had his wisdom teeth out.)

Catherine, I looked on our "online portal" but those weren't on the list. So I'll have to call on Monday.

Summer is ticking away... I was hoping we'd have his surgery and then have all summer to get him on track and healthy and ready for high school. Now I'm worrying.
 
AZMOM

AZMOM

Moderator
Mine always seem to "note" the ulcers but noone gets to excited. Now that said, she's never had more than 4-5 at the most. I feel bad for Brian. :-(

Let us know!!!!!!!!!!!

Hugs,

J.
 
DustyKat

DustyKat

Super Moderator
Oh no, poor Brian. :(:(:(

Do have the B12 and Folate tests repeated. Matt suffered with mouth ulcers prior to his diagnosis and after much research I started him on a B Complex supplement.

Speaking of bloods…how often is he having a full panel run?
A low thick output with an ileostomy may be indicative of dehydration, particularly when his mouth is giving him so much trouble, bless him. An electrolyte imbalance may contribute to the formation of mouth ulcers and then it becomes a catch 22.

Dusty. xxx
 
Brian'sMom

Brian'sMom

Location
Midwest
Dusty, They've been doing labs every month. Vit B was tested last month, but that one isn't checked every month. Maybe they can do it again at his appt end of July. His output is 600 ml approx in a 24 hr period. It isn't super thick. It is good sometimes and watery other times. Doc just did blood cultures and a full panel. So far he thinks he has a virus. They are giving Cimzia and MTX a break for now while he continues having a fever.
 
Ands

Ands

Location
Somerset, UK
J's big flare on diagnoses started in his mouth, 30 plus ulcers! They were still an issue for him until the past year when we changed his toothpaste, now using one without the 'foaming chemical' and difference has been huge. Don't get me wrong he does still get an odd one but nothing like he used to.

Can really sympathise with you though, speaking from experience of boy that couldn't talk, let alone eat as the pain was so bad.

Hope they get it sorted, particularly if it is a reaction to medication.

Ands. Xxx
 
I

If*

Hello, was wondering if anyone has tried coconut oil for relief, healing mouth ulcers? Getting to the source of why is the most important but soothing the 'symptoms' with organic coconut oil might help with comfort. I have seen several articles on coconut oil as a mouth rinse. Might be worth a try, it is natural and inexpensive.

Fast healing to all.
 
Farmwife

Farmwife

If* said:
Hello, was wondering if anyone has tried coconut oil for relief, healing mouth ulcers? Getting to the source of why is the most important but soothing the 'symptoms' with organic coconut oil might help with comfort. I have seen several articles on coconut oil as a mouth rinse. Might be worth a try, it is natural and inexpensive.

Fast healing to all.
Click to expand...
IF* now that you mention it, I use to make homemade toothpaste and used coconut oil as the base and my hubby that's plagued with mouth sores had great relief from them. However due to time I stopped making it and he still hasn't got as many.
 
I

If*

Hi Farmwife, i had seen that coconut oil has a possibility to help fight bacteria, im not too sure if it is true. I just have not seen any negative effects of using it as a source to bring comfort.
Thank you, it is good to hear that it could have helped.
Now, go make some toothpaste :) (lol, kidding)
 
J

james's mum

Location
Sydney, NSW, Australia
Hi Brian's mom,

I was just reading through your post and I am really sorry to hear your son is suffering with the mouth ulcers. My son who is 12 (discovered crohns nearly 2 years ago) suffers from the same thing. Not sure if your son is the same but mine has as well as small and large bowel, perianal and orofacial (crohns in the mouth and face). When we first discover the crohns his mouth and throat were full of them, his face swelled up and his lips swelled and they seem to go a bright red colour. The only thing we found at that time that cleared them was when he went on first an 8 week liquid diet, 2 days after stopping this they came back, then a 6 week and then further 4 week liquid diet. They then started him on imuran and now combine that with remicide. Most of the time it seems to be controlled but we find that about 2 weeks before his next remi treatment the ulcers and swelling come back. We have not really found anything that helps a lot. He has had all the blood tests, B12 etc.
He is a pretty brave boy and seems to just put up with them now.( don't know if I would manage the same). I guess it is all just part of having crohns.
Don't know if any of this helps, but in the beginning we found a lot of doctors did not even know about the orofacial crohns. I have included a link with a little bit of info about it.
http://dermnetnz.org/site-age-specific/orofacial-crohn.html
Good luck and please let me know if you come across any thing that helps.

James mum.
 
Brian'sMom

Brian'sMom

Location
Midwest
The only thing I find strange is that my son has suffered with crohns since he was 5 1/2. Its always just been in the lower part of his large bowel. Then 2 months After we do an ileostomy surgery in March at age 14...mouth ulcers appear. I know crohn's can be from mouth to anus... but seems to wierd that it just appeared for the first time here right after his surgery and being on a long bout of TPN. What do you all think?
 
M

Max's Mom

I'm sorry to hear about all your new troubles.For us,lately we are dealing with excema scabs on top of head and "crusty stuff" in nose and around one eye.As soon as one area gets better, another spot starts acting up.There is never a time when it is all better. Maybe that's the case with Brian's digestive system.Now when one area is better, the disease is finding a new area to "act up" at.I don't know if that is how it works,it was just a thought.I really hope he gets better soon.
 
kimmidwife

kimmidwife

Briansmom,
Ask your doctor for a prescription for magic mouthwash. It is the best thing and helps heal up the ulcers quick.,it also numbs the pain a bit.
 
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