Concerns about daughter

[mcjm]

Hi folks, I have been diagnosed with SLE for 4 years now and have severe organ involvement, heart/lungs. Looking back I think I have had this all of my life. My daughter who has recently turned 4 has a sore and swollen vagina, she can be up 3/4 times a night crying in pain and this has been this case for nearly 2 years now. The pediatrician diagnosed her with vaginitis and told her to apply steroid cream and canesten (to no avail), still waking most nights, the only thing that seems to give her a relief is a tepid bath and this is extremely tiring for me her luppy mum. Just wondering is it possible that this diagnoses is correct? the G.P asked about about autoimmune when her looked at her and agreed that her vulva and labia are inflamed but meds are not working, feeling lost and want to help my wee girl

[littleeffie]

Poor thing!

I suggest a re visit to GP and ask for more help or a second opinion.

Hoping things improve soon

[mcjm in reply to littleeffie]

Thank you, that is me just given her a bath for the second time this evening, she came down the stairs crying with her bottom. It looks red and angry

[Barnclown]

Am so sorry mcjm: poor darling....and so far the diagnosis & treatment really don't seem v convincing.

I wonder whether there is a possibility this could be early onset lichen sclerosus...are her symptoms clearly affecting the vulva/external genitalia primarily? Often all those external undercarriage tissues flare with inflammation, dreadful soreness & itching in LS. It's agony. The women in my immediate family & I all share the diagnosis of LS, and my youngest sister apparently first had symptoms in early childhood. We all have autoimmune conditions too (I'm the only with lupus though).

Perhaps it isn't the autoimmune condition LS...but LS lifestyle management techniques may be helpful to you while you're figuring this out

My wonderful LS forum includes members with children of all ages in treatment for LS. Sadly, MANY Drs don't know the signs & symptoms, so it often goes undiagnosed while sufferers are treated for more familiar complaints like thrush, vaginitis etc. There are other good LS forums (patient uk has a good one) but, although I've lived in the UK all my adult life (am 62), I've found my UsA forum suits me best...it's a long-established forum on yahoo, and extremely experienced + legitimate + sensible:

Our HOME page is groups.yahoo.com/neo/groups...

But NB the USA forums use different trade pharmaeutical names etc

The keys to treatment are lifestyle management + THE strongest form of topical steroid (dermovate in the uk...less strong topical steroids simply cannot help) which really does help...many of us use this alongside the antimicrobial emulsion Emulsiderm. We TOTALLY avoid contact down under with perfumed bath products & moisturisers etc eg aqueous cream makes my LS flare, also with synthetic fibres &/or bleached pads etc. AND, once my infant onset lupus diagnosis was recovered + treatment begun, my LS became even more manageable (when I had to stop hydroxy for 5 months last year, my LS flared slightly 😏)

Please let us know how this goes

Wishing you success: convincing diagnosis & treatment + management that really help

🍀🍀🍀🍀 coco

[AMOGO]

Hi! I've found your post while desperately searching for help. My daughter is 10 and having to bath 3 times a day for the last 5 months. After two swabs showing no infection her doctor has given up and actually said my daughter is attention seeking. At 3am, waking up screaming and then falling asleep in the bath, she's not attention seeking. Anyway - I was hoping your little one might be feeling better and you got an answer that might help my girl xxx