3 yo daughter diagnosed, need recommendations

Hello Emily’s Mum, I am sorry to be so long to make contact here. I have more emails and messages than I know what to do with most days! Over the years, there have been many children with LS, now grown up and married with children, who still live with the challenges but are also living good and happy lives. There is still a lot of mystery and theory about this condition and the internet has become a dangerous place for anyone with LS because there is so much conflicting information. I have tried to ensure that this site gives reliable, medically researched and current information and at this time, treating small children with clobetasol is definitely the recommended way to go as far as the international doctors are concerned. I have been to the US several times and am in touch with some very good dermatologists and paediatric dermatologists. If I can ever be of more help, do mail me at admin@lichensclerosus.org I say this because, it often takes me a while to go all through the messages and blogs on the site!

I have been in support for a long time. While I hold totally democratic views, I do feel concerned at the uncontrolled and random information on the internet now. The internet has far too much negative information on LS and most of would appear to be highly unsuitable for a parent of a child with LS. This is my view from years of experience. Everyone has the right to write what they wish but its hard to know who to believe. In real terms there is not a lot of true research regarding diets, many adluts with LS try all sorts of things and have success but at the end of the day, nobody’s biochemical make up is the same and a normal healthy diet is probably as good as anything and I doubt any doctor would want to put a small child of three on any kind of exclusion or even inclusion diet. As for hygiene, the ISSVD, a USA based vulva organisation recommends using only plain water for bathing/showering and its a regime that I have found successful in my own case, since 1994. I had LS in my childhood, and so remember being washed with soap that always left me itching and uncomfortable. The condition went when I became teenaged but returned just after the menopause. I notice that LS is quoted as two varieties, uncomplicated and complicated. So ‘what if’ your daughter’s case was uncomplicated and easy to control and she managed to have a good life with a husband and children. That is a totally different way to think about it. I am a holistic therapist in my ‘other life’ and holistic people have a saying ‘do not draw to you what you fear most’ It appears to be sound advice! So keep hopeful and think on good things for your daughter. The medics tell us that if we do not treat LS with steroids the condition may lead to scarring but they cannot tell us who is more likely to ‘progress’ to this state and so my view has always been to take the conventional steroid route as well as using any other moisturisers that soothe and are comforting. This approach is known as ‘Complementary medicine’. I have used nothing but Dermovate since 1994, not every day but as part of a controlled and monitored regime given to me specifically for my own case by my dermatologist and I have not itched now for years. However, I do get the white/pale areas of skin and they need to be treated. Emily’s mum, I do hope that you have found this message helpful. Do come back and keep us posted about Emily’s progress and about any problems you are having coping. What you write here may help others.

hi i was just recently diagnosed with LP and after reading your post i also have a 3 year old that has had the same issue for a long time probably started when she was 9 mths old but ive just been told by her pediatrician she just has sensitive skin , i feel bad that shes always irritated, what were your next steps into looking further into it, i dont know if this is hereditery so im wondering now could it be the same as me?