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Oral Lichen Planus in child

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amber79324
amber79324

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.  

1 like, 36 replies

36 Replies

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  • wendy39173
    wendy39173 amber79324

    Posted

    Also Amber freeze bottles of water for him. I crave iced water all the time when mouth is sore. Tell school he has to have it with him at all times whether they like it or not. Hope it helps x
    • amber79324
      amber79324 wendy39173

      Posted

      He must have ice water at bedtime every night.  I never knew why. He doesn't complain or tell me too much.  Sneaky thing. smile.  I love the idea of ice water at school .....

      just mentioned it to him. He said NO. I think he's embarrassed and doesn't want the others looking at him as if he's different. Ugh

  • Guppy007
    Guppy007 amber79324

    Posted

    Hi Amber, it was me that mentioned treatment for OTC treatment for thrush..I will send you a private email later on today with regard to that.

    I have Ulcerative colitis, Oral lichen planus,  Lichen Sclerosus, and MCS, which is bad.  I mention this because I believe all of these conditions are linked somehow, and that is why its very important to find out if your son has problems with food.  The best way to do this is to make an appointment with a Dietician, so that she can carefully monitor things, but of course this can be costly, and some people prefer to do this themselves, by keeping a food diary.  A food diary sounds easy, but I have found it to be difficult, as it is easy to forget stuff that you have eaten throughout the day, and then the whole exercise is pointless, so if you do it yourself, you have to do it very carefully, for example, sometimes I failed to mention that I  had had rice with some foods because it seemed such an innocuous food, but I am having treatment with an allergist at the moment, and I am shocked to discover I have a strong allergy to rice!!! 

     Anyway, I think in your shoes the first thing I would do is cut back on sugar, you cannot totally cut back on everything, bearing in mind his age, but there are products in the supermarket that taste good for a youngster and are low on sugar.   Then I think I would see how he is first with Dairy, again, you need to do it carefully, as I thought I was just lactose intolerant, but then found out later that I am in fact Casein intolerant too, it could take a couple of weeks, its a process that takes time and cannot be rushed..If you find out that he is fine with Dairy, then I think I would try going Gluten free for a couple of months.   I am not a doctor, and this is just ideas for you to try.  

    Also, you should Google Homeopathy and OLP as some people respond extremely well to treatment.

    • amber79324
      amber79324 Guppy007

      Posted

      All of these suggestions are SO wonderful!!  My son, 10 going on 25, is extremely independent .... And does NOT want his food restricted in any way!  I find that so hard to believe since he's miserable .... But I think he just doesn't want to be different.  I do agree 100% that something must "give" meaning we have to see if there's anything adding to this that brings on those ulcers more often.   And Guppy!....  Bless your heart!!  I'm really sorry you have so much to deal with!  I hope and pray you're able to get answers fast so that you find relief!!  I just can't imagine what you must go through on a daily basis!!  Thank goodness you have found out what all you have so you can move on towards aid.  And yes, those special doctors are expensive!  I have four children.  Money is tight. So I do what I can. I'll check to see if insurance covers any!!  smile 

      I also want to mention this.  A while back I found a webinar online that was tied to a Texas University or Hospital re OLP and there were dentists on the panel.  They mentioned the medicine that the specialist wants my son to start taking.  He said that if my son starts taking it that his ulcers will stop!!  This webinar I found said the same thing!!! So, a cure!?!?  But my son refuses to take that med because of the blood tests required while taking. 

  • Sasr24
    Sasr24 amber79324

    Posted

    I have been on mycophenolate for 1.5 years.  I don't have ulcers anymore, which is good, but I don't want to be on this medication forever.  It is an immune suppressant.  I don't know what kid of medication the panel discussed.  An immune suppresant for a child would be scary since schools are germ havens.  If you find out the medication, can you mention it for us?  Take care of yourself.  You have your hands full.
    • amber79324
      amber79324 Sasr24

      Posted

      Hi! Thank you for the comment!! The medicine that we have (and he refuses to take) is Methotrexate 2.5mg tablet. My pediatrician said it used to treat cancer patients so he was surprised the specialist recommended it. He would also have to take 3mg a day of Folic Acid because that med depletes it or something. That med also can effect the liver thus routine blood draws.

      My son had had this since he was 3 .... BUT we only knew what it was about 1.5 to 2 years ago. So, I never knew how to help or what to call it. None of his doctors knew and it was the third specialist who finally did the biopsy and we got the diagnosis. The dentists didn't know either. sad

      We're starting a low to no sugar diet as of today and I'm off to hunt sea salt for mouth rinses. Hopefully that will help even if it's a little.

    • Sasr24
      Sasr24 amber79324

      Posted

      Poor child.  I know he doesn't want those blood draws.  And yes, doctors and dentists are not up to date on this illness.  I went to six or more doctors and dentists before I finally got a biopsy and had it diagnosed.  I am just floored that there is so little knowledge about it. I hope the low/no sugar diet is a solution.  I am surprised the salt doesn't burn but a lot of people have recommended it so I hope that helps too.  Bless his heart.
  • kaleani75551
    kaleani75551 amber79324

    Posted

    It is just amazing to me to hear that even your doctors did not know.  My dentist was the first to give me the name Lichen Planus, he did not say Oral and he did not give any details when I asked questions, he simply did not know more.  At home, I went online and searched and printed out a 2 page info on the disease which I showed to the primary doctor  who I saw following the dental visit, I told him my dentist said it was LP and I wanted him to confirm it, so he confirmed BUT he read every word on the 2 page info sheet as if he needed to know what it was exactly, at least that's how it looked to me.  If you ask me, he did not know a thing about it either.  If LP is a common disease, as stated in all the sites I have seen so far, why don't they teach about it in medical schools?  You just cannot blindly trust doctors, we must listen to our own body and instinct and do the best we can to get answers. 
    • amber79324
      amber79324 kaleani75551

      Posted

      Such great questions!! I took him to UNC Hospitals and he saw a specialist and had endoscopy and colonoscopy done. Biopsied some ulcers and areas. But they weren't testing for Lichen Planus. Nor was it mentioned as a possibility when everything else came back negative. That doc suggested a different specialist and he *completely* discounted my son's issue because - I think this is why - he was having a "good mouth day" and had no or few ulcers. His ulcers are getting worse not better. Fast Foward to a few years ago .... I took him to dermatologist for skin issue and mentioned his mouth (because I'll tell anyone hoping someone has an answer) and she sent me to UNC .... And HE took one look and diagnosed yet biopsied just to make 100% certain. Yet ..... Other than prescribed meds ..... No one has been able to help except for this site and you guys!!!

      So!, long story to say I agree with you that doctors really need to be educated about this! How can it exist the way it does and so many doctors and specialists and dentists and dermatologists not ever have heard of it!?! Mind blowing!

    • Sasr24
      Sasr24 amber79324

      Posted

      You're so right.  I had doctors in VA that told me I had herpes!  I was almost 60 and married to the same man for over 40 years!  If one of them had bothered to do a biopsy, I would have found out years earlier. One TN doctor told me it was stress.  Several doctors and my dentist here in TN had no idea.  I finally went to a dermatologist who did the biopsy.  I do know one other person who has had it, but no one I've ever mentioned it to knows what it is or how it affects a person.  This summer I thought for the first time I was going to lose a couple of my fingernails, but I started extra Vitamin D and they look better.  I am still concerned.  Part of the problem is there are so many autoimmune disorders that no one doctor can oversee all of them.  But you shouldn't have to go from doctor to doctor to get a result and treatment.  Especially with a child.
    • wendy39173
      wendy39173 Sasr24

      Posted

      The problem is that when I looked into it years ago LP was only supposed to affect mainly women in their 50s and only last 18 months. My mum did indeed get it at that age and it really did only last 18 months! She feels very guilty about this as I got it when I was 13 and now at 46 it'a the worst it's ever been.

      The only theory I have ever been given is that my immune system was overloaded with my TB injection. It was given although I was border line requiring it. Maybe this has happened to someone else ?

    • amber79324
      amber79324 wendy39173

      Posted

      When I looked up childhood OLP, the main study I found was from the NIH and their study was from 1998-2003. They only found 3 children. Youngest was 11.  I found another study with a 7 year old boy.   My son had symptoms at 3. My mother-in-law has/had this.  She's somewhat better. She was never diagnosed with OLP but what she had is the same as my son. 

      Researching childhood OLP, they mention plaque like areas.  My son doesn't have that (that I've seen).  His is mainly really bad mouth ulcers that appear on his tongue, on side and beneath, on gums and roof of mouth. He has had issues feeling bad in his throat so we suspect he gets them in his esophagus.  We are aware of linear gastric ulcers present in his stomach when he was 4.   So, question:   The OLP that you all have, is it mainly mouth ulcers like canker sores or are there white patches??  I need to get a copy of the report and biopsy from the Dermatologist at UNC who diagnosed him.  For my son, they are getting worse. That's why in so desperate now and online searching for anything. I've begged him to,let me take him to Duke!  He will NOT go. He has been prodded and poked and needles and he's deathly afraid of them (he throws up at the thought of a blood draw!!).  I'd love to get his in because Duke, I bet, would do all they could to help.  Maybe when he's older he'll let me take him. 

      Regardind Herpes....  My son was tested 4 different times by 4 different doctors because they just KNEW that's what it was.  There's a Herpes form that is not sexual in nature.  All 4 times he tested negative.  My mother-in-law was told that's what she had and for forever that is what she thought.  *I* was the one who told her that Herpes is most probably not what she has.  She was shocked. 

      TB injection. Interesting.....   I don't recall a shot of any sort prior to his first outbreak BUT I do remember his first outbreak!  He had about 50 (yes, 50) tiny pin point ulcers in his mouth.  It was awful.  From then on, he had them but they were larger.  Some hurt like H&$$ and others don't bother him so much. Sometimes he runs a low grade fever. 

    • wendy39173
      wendy39173 amber79324

      Posted

      It's just not good enough really. We are always being asked for money for research,heart and cancers and of couse they are worthy causes. Even though it turns out all the drugs they find are too expensive for these poor souls to be given them. But where is the skin research. The skin,including the mouth and genitals are an entire organ and at times its unbearable. We shouldn't all be trying to do this ourselves. We are ill just like anyone else. When it involves children it is especially frustrating. Some dermatologists are great but I would love to meet just one who has actually experienced a skin disease.
    • amber79324
      amber79324 wendy39173

      Posted

      Wendy, you are SO right!  Our skin IS the largest organ we have. 

      My son just came to me saying he's got decisions to make.  I ask what decisions??  He said, Do I go to Duke!?  IF I can convince him to go, I will certainly tell them of this World of LP and the sufferers I've met online and how each is having to go it alone for help and guidance because the suffering is so severe!!  Maybe they can tell me WHY so little research is done ....... I'm so sorry Wendy!!!!  

    • wendy39173
      wendy39173 amber79324

      Posted

      I am sorry for you my love as an adult I cope. As a child it is bloody unfair. Please can you tell me what DUKE is? Are u in America? I am in England so would really like to hear what it is that your poor boy has to be making grown up decisions about. And as a mum you are so respectful as you don't push him into anything he does not feel is right. Must be so hard for you but sometimes u have to go with the flow rather than create stress. You have got that so right x
    • amber79324
      amber79324 wendy39173

      Posted

      :-). Yes! I'm in America. :-)

      Duke Hospital and Duke University are HUGE here and (supposedly) on the cutting edge of medicine!  Lol.  Ha. So, we'll see. 

      When my son was very young and this all started, I took him to doc after doc. Procedures and blood draws.... And he remembers it all!  :-( He now hates doc visits. It scares him to the point of vomiting.  That is why I have to respect him and his fears. But I talk about more testing and trying to get help because I know it's best for him. I don't want to ADD to his stress - anymore than I already have at this point. 

      I love Duke!  I went there for dizzy spells (turns out I'm just stressed and anxious lol) but they DID find an antibody present in my blood that *might* be an early indicator of cancer.  Imagine!  Knowing yrs in advance you might get cancer so you make sure you check and keep an eye on the antibody.  Early treatment!  So, yeah, I'm a Duke fan. 

    • amber79324
      amber79324

      Posted

      Oh, and you and I are the same age. smile
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