Daughter aged 10 diagnosed with Lichen sclerosus

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Hi

My daughter has unfortunately  been diagnosed with this condition. 

Apparently there is a chance she will grow out of it in puberty. 

Does anybody have a child who has grown out of it as they went through puberty? 

Many thanks for your help. It feels difficult to get information.

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12 Replies

  • Posted

    Hi Squiff

    I haven't heard of a child being diagnosed with this disease. Has she had a biopsy to prove it is LS? She seems too young to be starting on steroid creams so maybe try to control the symptoms with some of the solutions mentioned on this forum. Some women use coconut oil or Emu oil. I use a mixture of 4 tablespoons of Organic Castor Oil, 1 DROP of Lemon Grass Essence Oil and 2 DROPS of Lavender Essence Oil. It is extremely important not to exceed the number of drops and I suggest you use a small dropper for the oils.

    Jan

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    • Posted

      Hi my daughter was diagnosed when she was 5, she is now going on 7. The dermatologist said it is rare for kids to be diagnosed with it and thats why they take pictures and are still researching the condition. My daughter was also prescribed the steroid creams too. Honestly when i first seen it i was soo worried my daughter said she had a sore from her bum whilst she was in the bath so i took a look she was bleeding and purple bruising inside the vagina! I thought what the hell? It was the most worrying time of my life. I started asking her questions, which i think any parent would and she said nothing had happened and then i took her to the drs they sent me to the hospital and one of the nurses got a 2nd opinion and as soon as the dermatologist seen it she diagnosed Lichen schlorosus. Since then the purple bruising has gone but she has itching still and i am recently worried because it looks like a purple mole has appeared above the vulva. I've never seen any purple like mark outside of the vagina. So i have booked an appointment with my dr.

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  • Posted

    My twin 5 yr old granddaughters have it. The doc told us the same thing. I hope it is true!! I hope your daughter does too. They are too young for this!!😣🤥

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    • Posted

      My daughter was diagnosed at 5 years old too. It's such a shame they have to suffer! My daughter was crying in her sleep for a week until the treatment started working! Thankfully now she is 7 it is under control apart from the itching. I hope it does go in puberty! x

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  • Posted

    My GP has told me that LS can clear up in children - particularly in puberty period. Take heart. - Sarb 
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  • Posted

    Hi, most doctors should be able to diagnose LS from appearance only.  I would be very careful of home remedies as there is a difference I think between adult LS and childrens LS.

    LS is an inflammatory condition and steroid treatment helps to keep the inflammation and the resulting damage, controlled in most cases.  Abandoning steroid treatment can lead to complications for children in later life. 

    A suitable compromise can be made by using steroid treatment alongside holistic treatments, working with a reputable holistic doctor who will not ask you to stop steroid treatment but who will work with you and your child to support quality of life.

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    • Posted

      Excellent advice, you are definitely more knowledgeable than I am with regards to LS. 
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  • Posted

    My daughter was diagnosed at 8 and is now 15. Sadly it is not showing any signs of getting better or her growing out of it. She is now under Great Ormond Street as she also has vulvadynia and anxiety. The whole pain, itching and feeling unable to do normal activities has really affected her mental health. I’m sorry this isn’t a more positive reply! I find the best thing is to not make it a taboo subject. If she had a problem with her arm or leg or heart you would talk about it. The longer we have dealt with it the more open we have been. School have been great in understanding her issues and limitations. She is currently being tutored at home as the pain is too bad to sit all day in school on hard plastic seats! She still uses the steroid cream as well as emollient to wash with and as a moisturiser. I really hope that this will be something she and your daughter grow out of at it is just a nasty condition. 
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  • Posted

    I believe I have had this since I was a very young girl.  It most certainly abated during puberty and through most of my 20s and 30s (although I did have symptoms here and there).  It got worse in my 40s which I assume was due to waning estrogen.  

    I think it can go away when estrogen is up but probably comes back later in adulthood.

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  • Posted

    Many thanks for your replies- I am really pleased that I have found this support group. Fingers crossed that it can be managed. I will take note of all your tips and suggestions. It is great to feel supported. 
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  • Posted

    Hi there, I was just poking around these forums two years after my original post about my daughter's LS. She is now 4 years old and it has been a roller coaster 2 years with this condition. The condition is confirmed by both her gyn at Boston Children's as well as her dermatologist. I am hoping the condition goes away with puberty as they say, but for now I am able to control the symptoms with a combination of topically applied Manuka Honey (first choice! my daughter asks for it!) and also prescribed steroids (last resort). She has not had a fissure or sore in over a year on this plan, whereas before I introduced the honey she always had one or the other. She is finally potty trained, and overall living more comfortably. Her gyn tried to gently steer me away from the honey, suggesting that she ingest it orally rather than apply topically, but this is the only thing that calms a flare up. The redness and tightness of the skin disappears within hours. The white ring is gone by the next day.  It is very sticky, and I was told it does sting a little?, but the relief is visible and it is my 4 year old's preferred treatment. Just thought I would share. Always talk to the dr, as ours didn't initially agree with this treatment but agrees that "whatever you are doing is working" at her last check up. 

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  • Posted

    Hi Squiff, read with interest all you had to say and my heart goes out to you for the hard times your daughter has had so far and it sounds as if you are doing your utmost best to try to ease her discomfit.

    Take care

    Jan

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