Lichen Sclerosus in children

Oh your poor daughter, my heart goes out to you both.

My daughter was diagnosed age 4, had a few bouts and then it spontaneously cleared up. It may have been a misdiagnosis, and she has had no problems since then but from what I remember (it was a few years ago), when it was really painful to wee we ran a bath, sat her in it and then it didn't sting because it diluted everything. Your 10 year old may have more of a yuck factor, but she could always shower afterwards. On less painful days we kept a jug in the bathroom and poured water over her when she had a wee, again trying to dilute the urine. Hope that helps. Also loose cotton pants and no tight trousers to reduce discomfort and pressure. A responsible person at school was told and would pour the water for her on bad days, they kept a jug for her there.

I also remember that there were several chats on mumsnet with children who were affected and mums sharing tips. you could try to look there too.

Also do get her referred to a vulval dermatologist. She should see someone who knows about the condition who will monitor her. Even a good GP just won't have the experience, nor will a general Gynae or paedatrician. My GP followed the clinical guidelines but the specialist told me that they were wrong for the condition and that much more intense treatment was needed initially to bring it under control. She was absolutely right and it wouldn't have calmed down without the specialist input.

Good luck

Sighs

Hello

Thank you so much for replying - I think I will get her referred to a vulval dermatologist. It seems to be getting worse rather than better with the Dermovate but I'm not sure if that is because it's quite hard to rub on and so it is making it more sore.

I have just joined Netmums too, so thank you for that.

Jo

Good luck to you both, let me know how you get on.

There's Netmums and Mumsnet, very confusing I know. I used Mumsnet and found them very helpful, there also seemed to be a possibility of local support networks with it. I don't know Netmums, I'm sure they're just as good.

Another thing; Weleda calendula Nappy change cream is a good barrier cream and very soothing. My homeopath says it's healing but that may be exaggerated claims in this case! Ironically now, whilst my daughter is clear I now have LS so I speak from personal experience too and it's the nicest thing I've found to use. (Don't worry it's unlucky coincidence, that we both got it rather than a sinister pattern). I find that putting it on every morning and if I feel sore helps a bit. It's designed to stop wee stinging in a nappy, so perfect for the job, and all natural ingredients. You could get her some from any health food shop or I've seen it in Waitrose.

Everybody has their favourite product, so be prepared to experiment. This is mine. I hope it works for your daughter too.

All the best

Sighs

You poor person Jo, my heart goes out to you , and your daughter- it is hard enough to have LS without seeing your daughter have the condition

i just wanted to suggest that you - or she dabs the ointment on rather than rub it in, the warmth of the body will spread the ointment- normally a pea sized amount is suggested for adults. Dermovate can sting at first

use a emolient cream for washing the area-I use Diprobase, there are many others. If she has periods extra skin protection will be needed as blood on the area stings as much as urine; there are times that the condition goes up and down, and see the advice others have given about diet, that may help too. Strong urine will sting MORE than weak urine so ask her to drink A LOT of water and at school too and tell the teachers it is necessary for her to do so

My very best wishes and thoughts Good Luck

Sue

I like Epaderm for washing, and it is soothing and makes a good barrier cream. You can get it on prescription. The ointment (in a tub) is better than the cream (pump action bottle) but beware it makes the bath slippery. Avoid anything soap based, it dries out the skin and can irritate. Avoid anything perfumed too.

Again, it's a scenario where different things suit different people, if your GP is approachable, maybe he/she will give you several to try, you have to find what suits your daughter best. Lots of people swear by simple over the counter aqueous cream too. I followed every recommendation and bought some very expensive products, but eventually found what suited me best was quite simple and easy to get hold of.

All the best

Sighs

Hi ya, I have some calendula left over from my other daughter so I will try that.

How often are flare ups and how long do they roughly last? When I put the steroid cream on her last night the whiteness looked a little worse and I thought that 6 days of dermovate would have made it better. Her perineum also looks like it is going white and around her bottom looks bruised?

We still have 4 weeks until we see a normal dermatologist yet alone a vulval one!

We have been prescribed dermal 500, a bath one and a wash/cream one, I presume that is similar to Diprobase although in my experience I think Diprobase may be better but we have just collected 2 huge bottles of Dermol 500!

Many Thanks, Jo

I use Dermol 500 which my GP prescribed but my specialist was sniffy about and said it's got too much something (perfume?) in it. I'm using it up and don't have any adverse reaction but I'll then move back to Epaderm which was the best one for me.

It can take months for the whiteness to get better, is the itching improving? I'm not a medical expert but if you think it's getting worse rather than better surely you'd have grounds for going back to your GP and trying to get the other referral running alongside? It all depends on how open they are, and your relationship with them. Can you do a bit of research to find out the name of a specialist in your area? that would cut the time being referred around to the wrong people. There used to be a forum with a helpline which I found by googling. It was a while ago though and I don't know if it's still running.

Sighs

Lidocaine will help cut off the edges from the pain. You can find it in a store as a creme for the anus (Sperti) or you can ask a doctor for a gel (this is also a nice cooling down effect) used for bringing in catheter (Instillagel). A gel is more comfortable to apply. My daughter (10 years old) says it helps good and she can apply it herself on the painful areas.