Lichen Sclerosus Problem

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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.

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  • Posted

    HI Shawn oh the poor dearheart. I am 72 and was just diagnosed with this - well and I also self-diagnosed it a few weeks ago.  Before I could gt an appointment yesterday i was determined to take take things under control asap.   I found the story of a young woman whose naturopath told her to take Vitamin D.  Another forum also mentioned acupuncture. Oh my god! I felt SO much better within 2 or 3 days... apparently Vitamin D is also considered a hormone. I've been taking 15,000 a day (three chewables)  until this thing is resolved.   AND here is another site I just discovered that will become my lifeline for the rest of my life... very doable protocols. By all means find out about Vitamin D for children... I think I'm remember ing htat many of our children are deficient in D3.  Much luck, nancy

    • Posted

      Nancy, The main consequence of vitamin D toxicity is a buildup of calcium in your blood (hypercalcemia), which can cause poor appetite, nausea and vomiting. Weakness, frequent urination and kidney problems also may occur. ... Blood levels should be monitored while someone is taking high doses of vitamin D

      According to the Institute of Medicine, 4000 IU is the safe upper level of daily vitamin D intake. However, doses up to 10,000 IU have not been shown to cause toxicity in healthy individuals

    • Posted

      Hi Guppy!  that may be what has been tested and assessed at some point in time. . BUT I just got back from my cardiologist-turned-integrative medicine guy who taught me BUNCHES in just 15 minutes.  He is happy to have me taking 10,000 IU for some time. Only the 15K for the short term. I'm already back off of that dose because I am no longer in pain. Some years ago before this LS my physician assistant at the clinic had just come back from a conference in which a healing dose for Vitamin D was risen to 10,000.   ANYWAY< here is some exciting news - at least to me, you all. What my integrative cardiologist doctor taught me about why vitamin D was working so quickly for me was that LS is an AUTOIMMUNE disease - which THYROID disorders are also.  Vitamin D levels in the general population are already critically low worldwide. Then you add women and thyroid issues and you have a critical level of vitamin D deficiency.  HERE is the part that I never would have found online by myself - Part of the reason (in the U.S. at least) that so few women get the correct diagnosis about thyroid issues are that most regular doctors only order the TSH and T4 tests - when they come back "normal", they send yo away calling you a hypochondriac argh.  yep, I had that happen for 15 years before I found this wonderful brilliant doctor who looks beyond the box of his earliest training.  I don't know if any of you all know about this TPO test - that Dr. Bailey says should be standard protocol along with the TSH.... it stands for Thyroperoxidase (TPO) Antibodies.  If we have thyroid antibodies (autoimmune) in our system... no matter where we live, arizona sun etc our skin will not absorb the vitamin D from the sun as other people!!!!  WOW.  (the sad part of all this for us women is that Dr. Bailey said he learned this in the same 3 year internal medicine years of schooling as every other doctor, before specializing in cardiology.. too many apparently just don't pay attention). I am ever so blessed and thankful for everyone here who have offered other protocols as well. I noticed that some people has mentioned MSM. I use dot take for general muscle strength.. I'll get some again immediately.  I'm also doing Wild Yam Cream instead of the steroid cream. Any other recommendations appreciated. 

    • Posted

      Hi Nancy, I am happy to hear that you have found someone that really listens to you and that you feel like is helping.  I am unable to take Vitamin D, something in it my body cannot handle.  Fortunately, i walk twice a day in the sun and it seems to be keeping my Vit D measurements at a good level.  Many people don't understand the importance of Vit D but it is crucial for maintaining a good level of health I think.  Just as long as you don't overdo it and you are working with a doctor then it should be good.

  • Posted

    It is a concern for one so very young.  I am not a doctor but I do have experience with LS and not everyone with LS has the typical white plaques of skin. That being said,  It is interesting to me that she does not complain about the sores, because quite honestly when you have those it is usually agony. 

    I think in your shoes I would take her for a second opinion someplace else if you can.  You really need to find a Vulva clinic. In the meantime, I would avoid using the Clob on the open sores for now.  When I used the Clob on open sores it made things worse.  My view is that the Clob is good for some areas but not all of them.  Can you give her regular warm water baths with a tiny bit of salt in? then pat dry and put on something like Desitin cream on the sores, hardly any is the best.  

    After a couple of days of this try to dry out the sores by bathing, drying, and gently dusting the area with something like cornflour.  The drying part is the key to success, even if you have to use a hairdryer on a COLD setting.  You can not use normal talc, but the idea is to try to dry up the sores.  I have done this method with success.  I used a tiny bit of Desitin (just for a couple of days) and then I went to work on drying out the sores.  I actually used a fine flour, which would work for you as well.  While she is flaring it is important to try not to let her have a lot of sweet stuff because it makes things much worse.

  • Posted

    good morning Shawn, Nancy here. I've now had 5 or 6 days to read everyone's comments - hours of reading.  I'm starting to build a good visualization of what is going on and how to go about fixing this. It's become apparent that most wonderful people here are finding anything and everything to address immediate pain management. They  discover that steroids don't work on the CAUSE. SO, we all need a two-pronged approach. the 2nd part has to be how to work with autoimmune disease. That means for me anyway, to go to a strict anti-inflammatory diet. I just found out about the phrase "soft tissue healing" and found a website that lists the nutritional requirements to address that. As you can imagine it is a lot of the vitamins. C seems to be one of the most important for directly aiding the skin tissues. I've read elsewhere so far that we need our magnesium levels to be superior... as well as vitamin D i wrote about a couple days ago.  smiles - I've just ordered some wonderful vitamin D for my 2 year old grandson, Nordic Naturals D3 gummies.  Anyway, you are a couple months ahead of me in this search so you may know all this already, but just to let you know I care and feel for you and your grandaughter and hope the best of ALL of us.. 

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