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Lichen Sclerosus Problem

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shawn52867
shawn52867

I am raising my granddaughter and she is now 5 years old. She was diagnosed with LS about 3 months ago and after trying every single OTC medicine possible her doctor put her on Clobetisol. She has genital LS from her front to the back. The Clobetisol which worked for awhile and has seemed to start making it worse! We are thinking about stopping the medicine and trying Castor Oil and Lavender. Has anyone had success with this? I am so determined to find something that works for her. Please help with advice.

0 likes, 24 replies

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  • lester80
    lester80 shawn52867

    Posted

    I am so sorry! I can't even imagine being diagnosed at such a young age.  I have found a lot of relief with an oil called restore.  You can get it here: http://www.lifeworksskinessentials.com/shop-1/restore-natural-oil-blend  

    It was created by a woman who has LS, for people with LS.  You can read her story on her website. I believe it would be perfectly safe for a 5 year old. I also have found relief with a skin oil called miracell.  I have been using this oil even before I was diagnosed with LS for my face and have loved it and started using it multiple times a day for my LS. You can get this oil on amazon: https://www.amazon.com/Miracell-MiraCell-Skin-Relief-Support/dp/B001VNP1CC/ref=sr_1_1?ie=UTF8&qid=1515474196&sr=8-1&keywords=miracell+skin+relief+and+support[/b]

    I have read a lot of people finding relief by using the baking soda soaks so I just started that.  They also found borax as a way to heal and I am going to start that tonight.  I hope you find relief and find something that helps.  One day I pray for a cure!

  • sandra52875
    sandra52875 shawn52867

    Posted

    What type of Dr made the diagnosis?  Have you gotten a second opinion from a specialist?
    • lester80
      lester80 sandra52875

      Posted

      My OBGYN diagnosed me when I was 30.  I am 37 now.  I have tried to find someone who specializes in LS but it has been really hard for me to find a doc that specializes in it??  I have thought about getting a second opinion lately with a dermatologist.  I never thought about seeing a dermatologist until I joined this form and saw that a lot of people were seeing a dermatologist vs an OB.  I know a lot of doctors really only treat it with Steroids and in my case estrogen cream
    • sandra52875
      sandra52875 lester80

      Posted

      You may want to search for a Vulvar Clinic in your area.  The doctors are specialist in all diseases of the vulva.  Yes most will prescribe Clobetasol.  It is the gold standard treatment.  I use coconut oil to soothe the skin.  Hope this helps
  • lester80
    lester80 shawn52867

    Posted

    I am not sure if you got my post about the things I use to find relief since I posted actual links and I am not sure if this sight allows links.  I use Miracell skin relief and support which you can get on amazon.  And I also use Restore natural oil blend.  That blend was made from a woman who has LS.  You can read her story on her website.  If you look up life works skin essentials it will link you to her website where you can purchase the restore oil.  Also I would recommend reading up on the Borax post on this form.  I have found a lot of helpful information from that thread.  Good luck! It's comforting to find a place where we all share the same struggle.

    • shawn52867
      shawn52867 lester80

      Posted

      Thank you so much for your information and yes it is comforting! I took her to a Pedicatric Dermatologist for her exam. The doctor immediately diagnosed her with LS (no Biopsy) and started her on Clobetisol. That was about 2 months ago. The only thing that keeps me guessing is that she has the terrible lesions on her Labia with a tiny bit of fusing (which I keep oiled and controlled) close to her little bootie boo but there are no white patches or scars that are white. Also, the only time she EVER complains with itching is when I doctor her. She never complains with pain! It is my guess that she has had this since about mid August which was when we first took her to our family doctor that referred us to a Dermatologist here in Waco, Texas where we live. She immediately had us investigated by CPS and upon being cleared from that madness she sent us to have a Biopsy done in Austin, Texas to the Pediatric Derm. The Derm there took one look at her and diagnosed, she said no Biopsy needed and so here we are....
  • j02359
    j02359 shawn52867

    Posted

    Hi there, I think the most important step is to have her referred to a specialist vulval clinic or another expert in childhood LS.  The useful tips on managing adult LS available here on this great site might not be suitable for  children.  If your granddaughter gets the right treatment now she may well be able to avoid future problems and her LS will probably go into remission.  So my advice would be to fight for access to an expert in childhood LS or failing that to a doctor who is a specialist in LS - they do exist.  Every best wish, J.
  • Bridge_of_Sighs
    Bridge_of_Sighs shawn52867

    Posted

    I had a quick read through the forums and on the fourth page was someone whose 6 year old was diagnosed, I also think I remember someone with quite young twins. I couldn't post the links, but maybe if you scroll through all the topics posted you can link up directly with other people who have posted about their children and LS, and share advice.

    Good Luck!

     

  • seginns
    seginns shawn52867

    Posted

    My daughter was 5 when she was diagnosed.  She was put on a low dose steroid cream, Desonide, to start and is still on it 8 years later.  Clobetisol is one of the most potent steroid creams available.  I would go back to the doctor and see if a lower dose would be better for her. 
  • Assilem7477
    Assilem7477 shawn52867

    Posted

    I dont know if you are interested in a diet change to try and help. You can Google the terms "leaky gut" and get theories of why people develop these conditions. I'm so sorry a 5 year old should not have to deal with such an issue. I hope you get relief soon.

  • debi14820
    debi14820 shawn52867

    Posted

    I have not heard of that combination myself. Maybe try Emuaid first? Make sure the website mentions it's ok for children too. I started out using warm baths with baking soda. It soothes the skin which seems to keep the Lichen at bay. Twice a day to start. Maybe look for a pediatrician that is familiar with Lichen. Ask them to be sure! I am so sorry she has it. That's way too young!! There is also something called Recticare that has 5%Lidocaine in it. Make sure it's safe for children!! That treats the pain only. Be careful with products and check the ages on the package!!

  • Guppy007
    Guppy007 shawn52867

    Posted

    Hi, can you share exactly what her symptoms are?  The list of symptoms for LS is long and depressing.  Sometimes I use the Clobetasol cream but there are instances depending on whats going on with me that it is better to use baby creams. For example the Clob I use for clitoris pain and the white plaques of skin.  But, for rashes, sores etc it is better to use something like Desitin as I found using the Clob made the rash worse, much worse.
    • shawn52867
      shawn52867 Guppy007

      Posted

      Yes and this is the strange thing. This all started with her back in August of 2017. She started to get red in her private area. We took her to our family doctor who referred us to a Pediatric Dermatologist who diagnosed her without a biopsy. She has the red open looking lesions on both sides of her labia as well as between her labia and anus. There are no white patches and the skin doesn't look white at all. It is just Red. She does not complain with any type of pain at all and the only time she itches is when I doctor her. I am really beginning to second guess things because we have been dealing with this for almost 6 months and it just doesn't seem like LS, although prior to her diagnosis we tried Lotrimin, Vagisil, Butt Paste, of course Vaseline and EMUAID (I did this as a final resort before the Steroids) and nothing worked. She has been on the Clobetisol for about 2 months and it is not working either!

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