I have a 7 year old daughter with lichen sclerosus

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After years of mid diagnosis my 7 year old daughter has now been diagnosed with lichen sclerosus it's been a long road but after a skin biopsy it has been confirmed.

She has a variety of symptoms much of which is controlled through steroid creams however she does get severe stabbing pains usually at night all down below and usually lasts a few hours of which calpol/nurofen does not help.

Any suggestions or anyone with a daughter with the same condition?

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  • Posted

    I have a daughter who is almost 7 and fortunately does not have LS, but since I have it myself I know what your daughter is going through and as a mom I sympathize with you as you try to find relief for your little girl.  Try using emu oil on her several times a day.  Teach her to apply it herself.  I read about it for at least a year before finally deciding to try it myself and I couldn't believe how much of a difference it made.  You have to be very liberal with it at first--apply in the morning, a couple of times throughout the day (particularly after using the bathroom), and at night right before bed.  It helps to build up elasticity in the skin and softens it.  Make sure she is always very clean down there.  An ice pack when she's having those pains may help, or you can always try a warm baking soda bath.  That brings me and many other sufferers a lot of relief but I know others on this forum have actually found it irritating, so unfortunately that particular recommendation is just trial and error.  Just don't overdo it on the baking soda--you don't need much.  I had to look up calpol and nurofen, but it looks like they are what we call acetaminophen and ibuprofen.  Try a naproxen if you can get a child's version.  That has always worked better on me than acetaminophen or ibuprofen.  Good luck, I hope you find relief for your little one!

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    • Posted

      Thank you I will look up the oil, also the baking soda bath sounds like an idea. Just horrible when I can't help her. She has a wide range of liquid paraffin and epiderm cream to help keep clean.

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    • Posted

      My daughter gets irritated down there once in awhile (more so when she was a little younger and not so good at cleaning herself), but when she is really feeling sore and itchy the warm baking soda bath does give her a lot of relief.  It does so for me as well with the LS.  Like I said, I think the mistake some people make is dumping too much baking soda in--if you fill the bathtub so she's sitting in it up to about her waist, just put in around 1/4 cup (I think the metric conversion is around 40 g).  

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  • Posted

    Hi Angela,

    Have you tried cutting out all sugar including natural ones? A lot of suffers find that improves things dramatically.

    X

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    • Posted

      With the diet its the easiest and cheapest thing to try (albeit annoying!). I guess it doesnt work for all. I also find that if I eat nuts it causes a reaction but I have a nut intolerance. I also can have a reaction when I eat sugar - feel sick etc, so it sort of makes sense that it is also aggrevating my LS. I think its our bodies telling us to listen to what it is saying!!! I must say, when I initially gave up sugar, dairy and gluten I did get a positive reaction within 2-4 weeks. Good luck in your journey to find out what your daughters triggers are, hope you find a solution really quickly XX
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  • Posted

    hi,

    I'm so sorry to hear about your daughter. My daughter was diagnosed aged 7 too and she is now 9.  She didn't have a biopsy but the dermalogist diagosed LS and prescribed steoroid creams after several years of extreme itching/burning and redness and also constipation which I've read can also be a side affect. 

    Unfortunately the steroid creams just exagerated the problem. so we decided to try and cure the cause not just the symptoms, but our GP would only suggest more steroid creams so we decided to look at other things.

    I'm not saying this will work, it has definitely been a journey and everyone is different but bascially because LS is an auto immune disorder we looked at trying to boost her immune system through nutrition..

    there are loads of reasons why your immune system can be low, so we saw a natropath which got us thinking about other things. ( eg, I think my daughter suffers from anxiety so stress can be a factor, also but all the good bacteria in her gut was gone, so we've been trying to boost this by a very healthy diet, low in gluten and sugar).

    After about a year now of being gluten free and low sugar (very tricky with a 7 year old) we can avoid much of the LS symptoms.

    If your daughter suffers from constipation, the best thing we have come across is a magnesium powder which we dissolve into water and juice. AS for the itching, we removed all soap from bath time and use either dead sea salts or a bath oil from Neils Yard with essential oils that help relieve the inflamation.

    As for topical creams we have got some emu oil, which others on this forum have mentioned, but we use it rarely.

    I recently read that  LS in girls will eventually go at puberty becasue right now their skin is so thin, and that with puberty the vulva skin will eventually thicken and therefore the condition will just go. I don't know how true this is, I would be very grateful to hear if any of this makes any sense, or helps you. 

    But good luck, I hope you find some answers.

    best

     

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    • Posted

      Thank you for your message.

      Ava has constipation and a fissure at the moment from it.

      I honestly hadn't thought about a naturopath but will do and make an appointment. Just feel anything is worth trying I don't want her on steroids for years and at the moment I use them for a two week period and then usually she has a couple of weeks clear before it irritates her again.

      We always thought she was a fussy child as she would never wear tights or leggings as it irritated her. It's been years to get to this point and just feel so bad for her and want to do anything to ease it.

      Steroid cream she is on is dermovate so one of the strongest and because it needs to be applied with caution I'm the only person that can do this which is so intrusive for her especially as she gets older.

      Many thanks again for your reply and will be making an appointment in the morning and will keep you posted.

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  • Posted

    Hello, my 6 yr old daughter was just diagnosed this week. We have been using the steroid cream and baking baths but I, too, am looking for any advice!
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    • Posted

      Hi there,

      Steroid creams usually work for most but not all children,

      They have worked for my daughter however she only has a few weeks downtime In between doses.

      I saw a nutritionist today who is a friend of mine but he also worked as a gynaecologist for 10 years before getting into specialist nutrition. He has made several recommendations with her diet suggestions since a lot of her troubles are internal inflammation and pain.

      Suggestions were

      Increasing ferment able fibres for example oats, porridge even flapjacks just to get the oats in.

      Increasing certain fruits (purple) blueberries blackberries purple grapes, etc these have large anti inflammatory properties,

      Increase veg intake of brightly coloured example, red pepper, carrots, beetroot etc.

      Whole fat live yogurts.

      Supplement wise he recommends a strong probiotic for short term boost

      Omega 3 and vitamin d.

      Let me know how she does with the treatment and good luck.

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