Lichen sclerosus experiences anyone?

[Blinkingblimey]

Dd is in Primary Infants and it seems has lichen sclerosus. Doctor wants to hold off sending her to a specialist as it's (so far) mild (ish) and she wants to observe for a few months to see if it can be controlled without the need of the whole medical hog as it were. This is ok with me as dd's symptoms are not extreme. If there's anyone out there with experience of this or who has a dd with this I'd be really grateful for any advice or suggestions you may have. Just want to gather as much knowledge as I can so I can help dd deal with it. Thank you.

Lichen sclerosus is aggravated by oxalates. Google a low oxalate diet and work it out for a little one. Also, check with your doc about adding calcium citrate supplementation as it absorbs oxalic acid. Often these tow steps can put it into remission.

When you say the dr wants to hold off sending her to a specialist - does that mean your daughter has been diagnosed by a GP rather than a dermatologist? If so I would press for a referral to a specialist dermatologist as LS is quite rare and also there are a lot of similar looking skin conditions, so I'd want to be sure.

(I was misdiagnosed with LS but it turned out to be just a form of eczema when I saw a specialist)

LS should be treated with potent steroid, usually Dermovate, for three months and then on a as needed basis. Ask for a referral to see a dermatologist or a gynaecologist.

Watch out for the steroids as they can cause weight gain, and long term can cause bone loss, and broken bones. The steroid ointment can relieve it topically and that's ok if you use a tiny amount.

My DD had this from age ~ 7 to age ~12. It was diagnosed by GP but then she was under care of dermatologist. It was very sore and itchy and caused her to have troubled going to the toilet (burning) and also she became very consitpated - I think because it hurt. She had steroid creams (dermovate) and Movicol for the consitpation for 2 or 3 years. The steroids we used intensively to start and then much less on an as and when basis.

About age 10 it got much easier to manage and then just went away and she was discharged from dermatologist. She is completely symptom free now.

I would say the worst thing about it was the constipation which took us a long time to realise the link with the LS. But once we did and used the Movicol to keep poos soft it made life much better.

The steroid cream did cause and initial reaction but we persisted after a few false starts and then it did work well.

There is some info on BAD website. Our dermatologist explained not to be too alarmed by the some of the info which is much more aimed at adults so I just kept things simple with DD - e.g. its an itchy skin condition, it's likely to clear up in adolescence etc.

DD's was "mild" when it started but I was glad we went to a dermatologist who was very helpful and happy to discuss over the phone between appointments.

Elsie, my dd was similar to your dd. She was first diagnosed a few months before 7. She's 12 now and completely symptom free. She was under the care of a dermatologist in GOSH and has been recently discharged.

She had mild LS (fortunately it did not affect her anal area), but our doctors and local dermatologist dismissed my concerns. It was when I persisted and asked for a second opinion that they agreed to refer her to GOSH. If my dd does get a bit sore (usually after drinking orange juice), I apply a thin layer of Paladin and it's fine the next day.

Can you buy paladin in the U.K.?

You can buy it from Comfyskin.com in the UK.