Lichen sclerosa - please help

[agnesf]

DD (8) diagnosed with LS last year. We have had a series of different steroid creams but have had little success in sticking to the prescribed treatment (1 full month each day, 1 month every other day & then as required) as she seems to be allergic to everything and all the non LS bits of her bum flare up and go really red and sore when we use the creams (even though we do everything to keep the cream just on the LS bits).

No she also has really severe constipation as she has been holding on to poo because it hurts so much. we have had a month of pooey pants (morning and after school) and have got to the stage where we are having almost 3 baths a day to keep her bum clean.

Have jsut started on movicol which seems to be shifting the poo but she is still in pain and is crying and becoming hysterical when on the loo. I can't use the LS creams because her bottom is constantly covered in poo.

I am at my wits end. Even if we sort out the poo issue I don't know how we are ever going to treat the LS. Gp has been great but we are not due to see the consultant for another year (everything was ok-ish when we last saw her).

Can anyone help/ share my pain.

You poor things. If it were me I'd go back to the GP and insist on being referred to the paediatrician (and perhaps the paediatric continence service, if appropriate) as soon as possible. You can't carry on like this for another year.

Phone the consultant secretary for an earlier appointment , we have had to do this many times and if you explain the problem I'm sure they will help ..

Hi Agnesf, have pm you.

pumba - was that in relation to LS or something else?

How awful, poor little thing. I have LS and it's miserable. I would definitely chase up a referral and push for a treatment package for all these issues. Good luck, I'm sure it will get better soon with the right treatment.

Sorry not in relation to LS but do have a little one with medical issues ..

Another update (am also on a Movicol thread).

This may be helpful to anyone else looking at this with problems like ours.

Have found that covering my DD bottom with Metanium nappy cream and then using the steroid cream just on the LS bit seems to work so can do the proper treatment which have been managing for about a week now.

Its a bit of a relief as we seem to be getting on top of the poo problems too.

Hi Agnesf, did you manage to get an appointment with the consultant? How's your dd's LS now? Is it under controlled?

Just an update to say how much progress we have made over the last two weeks.

Firstly the Movicol sorted out the constipation and after four days of almost constant pooing we have lowered the dose to 1/2 a sachet every other day and this is all fine.

Secondly have made a huge effort again with dermovate cream and have managed to do it for a whole two weeks which seems to be really helping. Have discovered need to use only a teeny tiny bit (about size of a very small pea) and have been using metanium cream as a barrier cream for surrounding area. We need to do another 2 weeks and then a month of every other day so will update again so that of anyone else has to deal with this it might help.

Think as a result of using steroids it has stopped hurting her to poo and so now she is happy to go whenever and wherever she needs to - result no constipation.

We didn't go back to consultant but our GP has been really really helpful, lovely and kind and also the mn threads about movicol etc have really helped.

Glad to hear that your dd is doing well, Agnesf.

My dd has started treatment last week. Need to use demovate for 3 months.
Just making sure I'm using the steroid correctly - do you apply the ointment onto your dd's pale areas and also the sore/red areas? Somethimes my dd gets tiny cuts - do we need to apply steroid there? Or best to avoid broken skin whilst using steroid?

Is your dd seeing a demotologist or a gynecologist?

Thanks for your help.