Oral Lichen Planus in child

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Hi.  My son was diagnosed with OLP when he was 8..... But his mouth ulcers started when he was 3!  He's 10 now. He has good weeks and he has Horrible weeks.  No one has been able to help us relieve his pain.  We do have some meds prescribed but none are miracle drugs (I know that doesn't exist. smile. I just wish it did). The medicine prescribed to him is Methotrexate 2.5 mg tablet - 6 at a time once a week. Also he's to take folic acid with this med.   He's not started this yet because he must have blood work done routinely since there is a chance this med will effect his liver .... And he's terrified of needles.  He uses Chloroseptic  mouth spray very often for the pain. He misses school very often. He sometimes has "mystery fevers" and feels just awful inside. He gets bad headaches. I read on one thread that someone mentioned an OTC med for thrush and an enzyme for candida.  I think I might try that for him.  Does anyone have any other suggestions for me?  My sweet boy is in pain and has been for so long and I'm worried that his childhood is being negatively impacted by all these mouth ulcers.  

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  • Posted

    Hello Amber,

    i did not know children could be affected, but I also had never heard of oral lichen planus until my dentist mentioned it after he saw my mouth.   have you try changing his diet, like different food etc.?  I know i am doing it myself   By eliminating certain things (wine, sugar and more) and introducing new and cleaner food to my body.  Since it is an autoimmune reaction to something, we never know what can work.  I started drinking small amounts of aloe vera juice once a day, other than that nothing...until or if it gets worse.  Give your little boy a hug from me🐯

     

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    • Posted

      Hi! Thank you for your response!!

      Yes, children get it. He had a biopsy done so we know for certain that it's OLP. When he was 3, he had ulcers so bad .... They were coming out of his anus. We took him to UNC and he had extensive testing done. Found 4 linear gastric ulcers in stomach. Nodules in both esophagus and descending colon. Those doctors were not the ones to diagnose OLP. They were only able to rule out Crohn's, etc. The specialist who diagnosed him with OLP has never mentioned diet yet I've read about it, recently.

      He's home again today from school because his mouth is awful sore!!! Can barely talk or move his tongue. He does not complain to me unless it's super bad because he's scared I'll send him off "to be tested". smile Bless him! I'm just so worried about his health and the potential damage to his body as a result of soooo many years of ulcers.

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  • Posted

    Mine (up and downthere both) is not as agressive as your boy's.  In your situation, if it were me, i would not stop looking for the medical expertise that will actually help him, if not cure it completely at least minimize the symptoms.  You know what, if they can put people on the moon surface and cure most cancers these days, then there must be a better answer to a common disease like lichen planus.  I don't buy the answer: there's no cure. or nothing to do.
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    • Posted

      I agree completely!!  My son doesn't complain, like I said, unless it's TOO unbearable.  That's when the low grade fevers start and he's angry (I would be too) and just feels horrible and he can't hide it from me.  These past few months have been terrible.  So, I've been doing lots of research on my own. What I think we're going to start (and he will HATE):

      - gluten free 

      - tomato free 

      - start taking meds for oral thrush and yeast candida (when a flair up begins)

      - add Lysine to daily diet (crushed and added to applesauce because the pills are Huge!)

      - refined sugar ..... I've read about cutting that out 100%. He's 10!! Dang!  I think I'll try cutting out gluten and see how that goes. Then if nothing works, cut or reduce refined sugar. But going gluten free will help drastically, anyway, with refined sugar so that's good!  

      - Sea Salt rinses. I actually just read about a lady who does a sea salt mouth rinse after EVERY food she eats and after EVERYTIME she drinks. She says it works great for her!  So, I plan to let him try that, too. He doesn't mind table salt rinses so I don't think sea salt will be that big of an adjustment.  

      - I've also looked into enzyme therapy for him. Particularly the candida enzymes but I'm still new to them. Not sure how often they should be taken or if daily is ok. 

      Thanks so much for your comments!  I hope that anything I mention to try to help my son will be of some help to others who are in pain with this. smile

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    • Posted

      Sea salt rinse? Got to try this one.  Right now I am doing sesame oil rinse, abt 10-15 min each time and spit it out.  I will continue until the bottle is empty and if no improvement then, i'll do the sea salt rinse.  I got the sesame oil idea from a French doctor online when i was researching lichen planus.  The aloe vera gel seems to help in the genital area and i want to keep using it, at least until Aug 31st when I see my obgyn for a look at the situation down there and confirm the diagnosis and possibly a biopsy.  This is all still new to me and i am learning to live with it.  Thank goodness for forums because you can really feel isolated thinking you are the only one.
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    • Posted

      I agree 100%!!  Thank goodness for these forums!!  

      The sea salt rinse, that other person said, was after every single meal and drink. That's her trick. smile. So, hopefully that'll work some and provide relief some. I do hope you are able to find relief for down there.  I'm really sorry!!  I remember how my son was when the ulcers were coming out of his anus ....  They stuck together and he could not walk. I had to carry him for days!  Bless you!!!  smile

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    • Posted

      Hi Amber..i just some sea salt and was wondering how to take it exactly.  Do you use hot water to dissolve it a little or just cold cold water and spit the salt out? Help - thanks..😏
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    • Posted

      Hi!!  I read about the sea salt on another post and bought some today. He used it for the first time tonight.  I used hot tap water and dissolved it really good.  He rinsed 3 times, then rinsed with water. 

      What he's taking now:

      - over the counter yeast pill to fight yeast

      - anti-fungal tablet prescribed by pediatrician. It dissolves in his mouth 

      - sea salt rinse.  Goal here is to rinse after EVERY meal and snack and drink 

      - Lysine pill once daily.  It's an amino acid.  Your body cannot make this. Yet it's essential to our health. Either eat foods high in it or take a supplement. Make sure you get appropriate dose. I'd suggest reading about it. smile

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    • Posted

      Also, I hope you find relief fast and the obgyn is able to help!! 
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  • Posted

    Hi Amber,

    I am so sorry your son has OLP.  I can't believe he started at age 3.  Poor thing.  I have had it very close to the same way and I really feel for him because the pain is unbelievable.  My heart aches for him.  Whatever you try, do one thing at a time for a couple of months so you can see if it works. From what I can tell what works is different for everyone.  I am a vegetarian (10+ years), eat very little processed food, exercise regularly and in excellent health.  And I still have OLP.  It's been active 5 years.  Recently I increased my vitamin D and it seems better, but it isn't going away.  I, too, am thinking of Gluten free by the first of the year. Be sure to run any supplements past your dr so you don't give him something that may cause him more trouble.  I feel for you, too, as I know this isn't easy for you.  I am so frustrated they don't know more about his illness! 

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    • Posted

      You're right!  One thing at a time!  smile. I just need to convince him to try at least one thing.  I almost have him convinced re gluten.  Others mention maybe trying to eliminate sugar first ....  Oh, he'll "have a fit"!  LOL.  He's 10 and loves his treats. smile
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  • Posted

    Hi Amber

    Your poor boy,and poor you. As a mum it must be so frustrating not knowing what best to do.

    I was thinking if the other post is correct and it is ok to have small amounts of aloe Vera, how about mixing it with water and putting it in some of those plastic lolly moulds for the freezer? Maybe with a tiny drop of any mouth spray that gives him relief.

    What better way to get the solution straight to affected area, plus the cold relief and bonus is he is having an ice lolly!

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