Mouth ulcers from hell, please can anyone help?

[Ames99]

Hello, I'm a newbie on Mumsnet and desperately hoping someone can help me. My 9 year old girl has suffered from chronic mouth ulcers for about the past year. They started at the end of our holiday in the IoW last year and have been pretty much chronic ever since. They are ENORMOUS, she gets batches at a time, they crack and bleed and they're incredibly painful for her.

We managed to keep them at bay for a while by giving her Feroglobin as it contains Zinc and B12 but now they're back and she's miserable. She's been to the maxillo facial unit, she's been to the doctor several times but they just dismiss them and say there's nothing they can do. We've also tried: bonjella, Iglu, every mouthwash on the market, salt water rinse, aloe vera jelly, she's had blood tests which are apparently clear and we've now requested a test for oral herpes although the doctor said it's unlikely. I know it sounds trivial but she can't eat, sleep or talk properly, she's in so much pain and it's really getting her down because it's gone on for so long.

PLEASE: does anyone have any other ideas as to what the underlying cause might be and also what I might be able to use to relieve them and try and get rid of them quicker?

How awful. I also suffer from mouth ulcers and I think unless you experience them you have no idea how painful they can be. From what you say it sounds as though there must be a reason for these so I would persevere in getting to the bottom of this. I can't offer much in the way of advice apart from what you have tried apart from trying an antibacterial toothpaste. There is one called 'kin' or something like that. It's expensive though and you need to order it. I think Amazon have it. The only other thing to do to relieve the pain is to take ibuprofen or paracetamol as you would any other pain. This may take the edge off so your daughter can eat.

DH used to get really bad mouth ulcers and read that you need to avoid any toothpaste with sodium laurel sulphate. This has helped. Check her toothpaste ingredients. Only a few do not have it in - some of the sensodynes don't (but some do you need to check packet) and there may be other makes. Horrid for her (and you). I will ask him later if there is anything else that has helped and let you know.

I used to get terrible mouth ulcers and it turned out to be a symptom of my celiac disease.

Is this a possibility for her? Any other symptoms, stomachaches etc?

Mine cleared right up (and have stayed gone) as long as I stay gluten free. Whatever the cause, they are awful and I hope you get an answer soon.

Do you have anbesol there? If you dab it on it really stings but then goes numb for quite awhile. She might be able to get some sleep at least. :(

I was also going to say coeliac disease. Does she gave any other symptoms?

I was going to suggest checking the toothpaste for Sodium-Laurel-Sulphate, my mouth was awful until someone suggested it could be that, changed to sensodyne and hardly get an ulcer now.

I was your dd at about her age, they were like huge thumb prints around the inside of my mouth- agonising. Wasn't coeliac, had sls free toothpaste, took multivitamins and ate a good diet. Dentist and doctor didn't really know anyway was told to take L-Lysine and a b vit tablet. It was a miracle cure, amazing literally saw them off quickly and meant they didn't come back. If I stop taking it eventually they return just like the old days but it's the Lysine that sees them off. My dd gets them too staryed around 7/8 whee she got some small ones but then they started to be like mine. I grind up the Lysine and mix it with yogurt or similar. Works for her too.

My DS1 used to get them before he was diagnosed with coeliac disease, though he did have other symptoms as well. I tested negative for coeliac disease but am gluten free almost all the time, the rare times I do eat gluten I get mouth ulcers.