My poor little daughter

So sorry about your daughter. Although I feel I won't be much help, I couldn't not see you have no replies. I've had LS for 30years, not as bad as some. Once you have the LS under control, the idea is to keep it that way. I had no fusing as you described, or any itching. Mine was burning, sorness and swelling. ( I have had a biopsy ) The trick is to find what suits your daughter to keep her comfortable. On this forum many of us are trying paladin cream, me included. I must say since using this cream its the best ive ever been. As its meant for babies cannot do any harm. Your question on no sex. Well, this can be down to the individual and whether they have it under control. Using the paladin cream every day morning and night and using an organic lubricate called yes yes yes .We are able to make love once a week. Read the entry on 26th July this is a mother with a daughter but further on in life. Good luck x

Hi. I too am very sorry to hear about your daughter. I have symptoms very similar to your daughter and like you do not want to use strong steroid creams. I don't know where you live but I live in the UK and have found that Avalon Organics Baby Avalon Protective A, D & E Ointment from biggreensmile.com is wonderful for easing symptoms. It is meant for babies too for nappy rash. I have also found that the more sugary foods I eat, the worse it is so I really recommend avoiding sweet foods as much as possible.

I have done a lot of research on LS on the internet and on a positive note, it seems that many children who have LS do grow out of it. I really wish her all the best.

Sue

You are all very kind, thank you soooo much for your replies. It heartens me to know she might grow out of it, but I do worry what the future holds. :oops:

I have been treating her with kinder cream but the fusion still exists so the docs say she has to go on steroids!!

:x

I have been doing a lot of research into a cure for LS. It is thought to be an auto-immune disease and therefore I have been looking into immunomodulators - things that can make the immune system do what it is supposed to do without suppressing it or enhancing it. I came across a product called CMO. It is marketed for arthritis but actually is thought to help all autoimmune disorders. I took a course of tablets and am now using the cream, applied to the vulva (I also use the vitamin A, D and E cream sometimes that I told you about before). Most of the fusion I had has now gone and I think it is working although it is a bit early to say yet. I am hoping that I will one day stop using it and never have to use anything again.

I would not recommend that your daughter takes the tablets as they have large amounts of calcium in them too but you could look into whether the cream is ok to use for a child - I imagine it would be. They say that you would need to use it twice a day for about 3 months.

I don't intend to start using steroid cream as I would like to stop this illness at source rather than suppress it for the rest of my life. Unfortunately doctors are not prepared to accept that there may be an alternative and you have to go out on your own if you want to do this. It would be up to you to look into it and make the decision if you think CMO cream is safe and appropriate for your daughter to use instead of steroids.

I hope this may help you.

Sue

I was diagnosed with LS 18 months ago, i am now 30 however whilst in hosp waiting for biopsy i read through my notes and realised i had it also as a little girl.

It obviously went away and was probably triggered again due to the birth of my baby and having to be cut.

Its possible your little girl will grow out of it.

xxx

LS cauese narrowing of the vagina and i wonder if that could be what you mean by fusing..fi that dont get fixed then she will find sex really painful and won't want to wether she can or not..i heard it can be fixed with surgery..I have severe LS the creams dont work or me. I they dont work just keep going doctors dont give up or it can get quite bad.