9 year old daughter diagnosed with vaginal LS I'm in despair

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After a recent exam due to an accident she was diagnosed with LS, I had never heard of it. Having read up on it since her outcome seems bleak medically. We are waoiting for a specialist dermatology referral & have been given Eumovate cream to use in the meantime. I would be grateful of any advice to halt the damage in its tracks before it gets any worse, from people who have experience. The Dr told me it was very rae in young children

 

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  • Posted

    Please don't despair Sue. Many of the older women on this site (including me) probably first had this as children without knowing it.  It is a relapsing and remitting condition pre-menapause and only after that is LS unlikely to go into remission.  If it is managed well there is no reason to expect a bleak outcome.  What matters most is the right referral to someone who is a genuine expert in the field.  I can understand how shocking this must feel right now but please hope and trust that it can be manged really well. 
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    • Posted

      Good point on having it as children. I had eczema as a child. I consider that a harbinger of things to come. No problems with anything like it until Menopause at 53 (last October). My immune system is reacting to something and screaming out through my (vulval) skin. Changed my diet, keep it oiled with coconut oil, occasionally baking soda spritz after potty stops, probiotics, ...in remission since
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    • Posted

      Thank you

      I can't help but worry for her, most people seem to end up with severe tissue damage and childbirth/sexual problems. I feel like she is doomed before she has experienced life at all and it seems so unfair

      Our GP says to take it one step at a time but its easy to say and hard to do! I also feel very guilty that i have dismissed it for a while as a sore patch or poor hygiene and treated her with sudocream, if only I had realised sooner there would have been less damage inflicted already

      Its also not nice for her to be genitally examined at such a young age she was so embarrassed, very proud of her though she was so very brave smile 

       

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    • Posted

      I have had ls for several years but only recently diagnosed....  I too used sudocrem for ages, so dont feel bad about it.....,     Its a difficult one to work out, specially if you havent cone across it b4

      xxx.   

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    • Posted

      Thank you, I ahve never heard of it & presaumed it was just skin sensitivity. Learned my lesson the hard way!
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    • Posted

      I think I had it in anal area since I was a teenager and am 45 now. I have had great sex for years. Had a little trouble with sore clitorus a couple months ago but I'm on top of that now too. Hardly any discomfort there anymore. I say that to encourage you that just because she has it young doesn't mean she's doomed to having sexual problems. I was very frustrated with the itching but fortunately it was only in anal area for some years. Eventually it spread to vulva. Now I have it all over the genital area but still can function sexually. Actual penetration causes no pain most of the time.
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    • Posted

      Thats really great to know Sandra thank you for being so open about it, Its a very personal problem I know and hard to discuss but the fears I have for her are genuine as Im sure you will understand. Yesterday I felt very negative about the whole thing as that was the information I was given initially but the positive response on here from the people actually living with the condition has made me feel much more positive on my daughters behalf, I thank all of you for that smile

       

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  • Posted

    So sorry for this distressing news. Glad you came to this forum. There is help here. Keep trying and Find what works. My thoughts: Change her diet IMMEDIATELY. Cut out ALL wheat and sugar, in all forms. It could be a systemic reaction to these two things.
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    • Posted

      Thank you Anne Marie its nice to know there is advice available from people with experience as I am a complete novice & obviously she relies on me to sort it out for her

      She loves her sweets,I shall certainly start cutting back on those if they are a concern. She also loves fruit, is natural sugar to be avoided also?

      Regarding wheat is that just bread and pasta? I havent any experience with exclusion diets so will have to research this I think

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    • Posted

      Wheat in any form: breaded patties, soups thickened with it, all pasta, all bread made with wheat flour (gluten free isn't all that great, either, as they add processed junk into it to make up for the gluten). You can substitute almond or coconut flours if you'd like to make your own toppings and things where wheat is called for. Do some research into how bad wheat is for our bodies. Worse than sugar. Giving it up has kept my LS in remission for months. Also losing weight without really trying. Inform yourself. All LS sufferers are unique; strategies that work for some may not work for others. I'm just sharing what has worked for me and several others in his group. I don't use any prescribed medication (so far -- just had first outbreak last October)

      Have controlled with amending my diet. Conversely, when I cheated and ate a bunch of wheat, my LS came roaring back. Learned my lesson. I don't even want wheat or sugar anymore. If it works for your daughter, just tell her to tell people she has celiac. It's easier!!

      Best of luck -- it's all going to be OK. There are worse things to suffer in the world. You will figure this out. Big hug.

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    • Posted

      By the way -- I'm 53. Had eczema as a child -- also autoimmune. Went away for years, now I believe menopause kicked it off in the form of LS.
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  • Posted

    Sorry to hear that.  I would change her diet, slowly, carefully, as I do think Gluten plays a role with this condition... maybe get her tested.  

    I understand how awful it seems as she is very young, but often with LS it goes into remission, often reappearing in menopausal women so that she might be one of the lucky ones, on one knows for sure.  The thing to watch out for is that she doesn't scratch the area as this can make things so much worse.

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    • Posted

      Thank you

      She isn't scratching at all & says its not itchy which the GP found strange

      Its good to know there is a chance of remission as her current condition is quite severe

      I will certainly consider intolerance testing for the foods mentioned as it seems quite a few food groups may contribute, not quite sure where to start!

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  • Posted

    I'm so sorry honey. I'm sure you are shocked at the news you have received. I've recently within the last two years was diagnosed with it and did not treat myself. And again was discussing with a new doctor Who had taken a look at mine private stuff. And it is concerning. I've seen people write on here at this for him having it all over their body and I was scared to death. Just keep researching honey did she have any symptoms at all? It's not the end of the world it's just a matter of how her diet is supposedly. I would think stress factor of 2
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    • Posted

      Thank you

      No symptoms I could really have worried about to be honest, it was picked up during an exam for something unrelated, which I am grateful for

      I will be asking for advice about the dietary link when I see the specialist as it is clear from my brief time on here that there is one

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