to not really want to be brushed off about this?

[SingingSamosa]

Posting here for traffic as much as anything really.

My 6.5 year old DD (middle child) has suffered pretty much all her life with what seems like really bad nappy rash in her privates. It doesn't affect her bum, just her actual labia but all the way up and back. The doctors originally told me it was bacterial vaginosis when she was a baby and I had prescription cream for it (Timodine). Despite hourly nappy changes she'd still get it and it was so so sore. They told me it would disappear when she started potty training but she was potty trained at 2 and it still comes back periodically.

We have been back to the doctors numerous times - she was even referred to a paediatrician at one point but they've all said there's no bacterial or fungal issue (from swabs). They think the main issue is that she doesn't manage to wipe away all her wee when she goes to the loo but she tries so hard to do this yet it still comes back. I (and she) apply nappy cream when it starts to get a bit sore again but it's not that effective.

Last night I was up with her for two hours whilst she screamed in pain and her labia were very inflamed and red looking. Eventually a cold flannel, some Calpol, cuddles and lashings of nappy cream eventually soothed her enough to get her to sleep but I'm at my wits' end! Medical professionals have said that there's nothing more they can do. It's horrible hearing her sob and scream and not be able to do anything about it

Surely they can't just fob her off like this? I've watched her wipe after she's been for a wee and there's not any discernible difference in how she does to how her big sister or I do it.

She is a bit of a precious snowflake type in terms of sensitivity - she can't bear wearing certain clothes because they irritate her skin, she can't stand loud or high noises etc. I've always thought this type of 'super sensitivity' was more of a psychological thing that children had than an actual physical thing but perhaps she has very sensitive privates?

Has anyone else experienced anything like this? (Sorry for the long post!!)

Wow, lots of responses!

I'll answer as many as possible:

No, she doesn't have worms. She does suffer with worms maybe once or twice a year since starting school (despite massive efforts at my end, and informing school, she still keeps getting reinfected as she's a thumb sucker!). I know when she has worms as it's a different pain she gets, and always wakes her at 10pm weirdly!! It's also very easy to see them when she has them.

She wasn't a preemie - she was born bang on her due date!

It doesn't cause her any itchiness at all, which is why I (and probably the GP) don't think it's eczema or an allergy.

We generally shower, with soap free products, not bathe. When they do have baths, there is nothing added - it's just water.

She's never slept with underwear on (except when she has worms) and prefers a nightie to PJs

We always use non-bio and switching to different products doesn't seem to make a difference.

I'll see if I can get a referral to a proper dermatologist. In fact, I'm seeing one next month for myself so will maybe have a quick chat with him to see if it's something they'd look at.

my little girl gets itchy, she was told to bath in oilatum (from the chemist but also available on prescription).
Also avoid pyjamas and try to get nighties, fresh air is good.

Singing, I notice you say she wears tights- I would definitely not use these or get 100% pure cotton ones, both my dd's can't wear tights without getting sore/over-hot in that area as their primary school was overheated to a ridiculous level. I would also get 100% cotton trousers, or a cotton skirt and allow her to let the air circulate, it's not that cold with long socks and to be honest, it's better than 2 hours of screaming over a hurting sensitive part of your body.

Also get cotton top and sew on label, don't take any shit from the school about wearing a nylon uniform, this is a health matter, just tell them she has eczema and change the clothes- I found keeping my dd cool and not wearing pants at night, plus chamomile/sudocream when it started to get inflamed really helped, and she's grown out of it over time.

I think she needs a wash after every wee/poo. Would you consider installing a hand held 'bidet' shower? That way she can wash herself and not worrying about filling a container with water. They aren't very expensive.

en.wikipedia.org/wiki/Bidet_shower

My daughters suffer from similar. Not sure if it has been mentioned, but make sure you are not using any scented bubble bath/soap products. My DDs have eczema as well so we only use prescription bath oils, like Aveeno and Dermol 500. It is possible that it is eczema. Have you tried some hydrocortisone cream?

I also find Sudocrem to be very soothing and helpful. It gets worse when my DDs do not have a lot to drink during the day, then urine is more concentrated and irritating and makes them sore.

And- the tip to drop tights is seconded by my mum who also has an issue with getting over-hot in that area and that's what the dr/specialist told her to do.

I just guess some people have naturally sensitive bits, and with the overheating in schools/tights, there a lot more infections and problems than there used to be apparently.

If they have swabbed for all the obvious things, and there is no bacteria/virus, my guess is she's just one of those people who gets terribly hot in that area of her body- both my girls did, I sometimes do, and my mum does all the time. I don't know if it's hereditary!

Once it is inflamed, there's little you can do (try my advice and see)- the whole trick is not to let it get inflamed. Nappies are awful for this reason, tights are just a slightly less worse version- honestly, her legs won't freeze, children weren't allowed to wear tight and wore shorts to school all year round in my school in the 70's and we all survived!

Sorry- once I've started I find it hard to stop, but I also agree no products in the bath whatsoever! Then at last minute, soap hair, stand child up and rinse off, so they are not sitting in shampoo/soap.

We don't use any products in the bath - and hardy ever bathe anyway as they prefer showers.

She doesn't wear underwear at night

She wears cotton most things except her school skirts

I'll try her without tights and see if that helps at all. Trouble is, she gets this in summer time too, when she's wearing nothing but jersey dresses and cotton pants! It might help a bit though!

Poor thing, I had something similar to this as a child and was in agony. I often used to wake in the night screaming and crying (in my sleep I'd overheat and start scratching and that made the pain worse).

My parents didn't take me to the Dr as it was around the time of parents being falsely accused of child abuse and they were scared

What really helped was ice cubes in a hanky or towel, pressed against me.

I never bathed just showered (which I see you already do - but even if you do bath her, make sure she stands up before rinsing her hair - even the slightest bit of soap down there would irritate me).

I never found out what was the cause but it did eventually go away, but not until I was a teenager.

Yes I agree no products in the bath, BUT I put SEASALT in the quite warm hard bath water and that helps eczema type problems.

Another thing , you could do is look at her acid foods and drinks intake; orange juice is very acid, as are potatoes, tomatoes and or pork products. Also vinegar.

GD had very nasty nappy rashes and DIL who was bf gave up coffee and tea and she got better fast.

Op, I don't think the tights are necessarily the cause, but it's something easy to eliminate, and lots of children with eczema do react badly/swell in response to synthetic fabrics- at the moment, her bits are encased in two layers of synthetics (skirt and tights) at school where it will be very hot and she'll run around at playtime- it all just creates a sweaty environment.

I think drinking lots is good too, again, not necessarily treating the causes but stops the urine hurting so much.

I find it kind of reassuring that so many people report something similar, one of mine had this on and off and woke up sobbing a few nights once, but as it seemed to go away when we put sudocream on, I didn't pursue it at the doctors. She was also fussy about socks/pants being 'right' so perhaps it is an over-sensitivity thing as well.

I meant she had it for a few nights on and off- probably over about 2 years, and probably at the same age.

Poor little girls, I do think school uniform has a lot to answer for.

i remember having similar problems at your daughters age and remember the cream I was given to treat it, dinoestral cream! I have just looked it up, its an oestrogen cream not reccomended for children! However my Dad was a GP with a sideline in hospital dermatology and obviously just gave it to me off-prescription. I seem to remember it working but obviously I am not recommending it, rather suggesting that a dermatologist might have some new approaches to try.

I am a bit nerdy about medical stuff ( NB I have no medical quals beyond reading all my Dad's medical magazines as an obsessive child reader) and have been googling, sub-acute Strep A infection of the vulva sounds a possibility but I see she tested negative for bacteria.

Good luck, I hope you find something helpful soon.

Given her skin issue plus the repeated worms, I would see about getting a private stool analysis (Genova Diagnostics, or similar) plus a nutritionist to interpret the results and help resolve. I would put money on there being a bacterial imbalance that is not being picked up by the swabs. I also wouldn't rule out her reacting to the nappy cream, the two things could be linked.

I would try giving her some piriton to help calm down the irritation and help her sleep.

Thanks Wiggly - she was given some oestrogen cream once but it didn't make any difference unfortunately. Yes, tested negative for bacterial and fungal infections.

She eats extremely healthily - off her own back - and only really drinks water, again out of choice! She doesn't like orange juice so doesn't drink that. I do make sure she drinks a fair amount of water because she's always been a non-drinker. She drinks just over a litre a day now, which is more than ample for her tiny little self (still mostly in 4-5 clothes).

I'll have a look and see if we have any Sudocrem about, not sure we do any more! It's a lot thicker than the nappy cream we've been using so might stay on longer.

Unfortunately using a shower/jug after weeing at home won't help her at school - she goes to the toilet quite a lot at school because of her seemingly tiny bladder!

When I was younger OP I could react to the toilet roll we used,I still get it now and again so have to watch what one's we use.

Another thing has your GP done any food allergy tests?If not it could be worth asking for them to be done.

We get this too with DD (5). We see a dermatologist.

DD does not wash with soap, and nothing in the bath. We use QV bath oil, gentle wash and the thick cream to wash her bottom (front and back). We have to use nystaform cream several times a week as maintenance and twice a day if she has a break out. No washing hair in the bath, as her bottom should not come into contact with the shampoo and conditioner in the water. The dermatologist wanted us to wash her hair over the sink, which was a disaster. So we compromise by doing it quickly, once a week, in the shower and using the QV cream as a barrier for her bottom. After her hair is washed, rinse her body down and then a bath as normal.

And no baby wipes, even the hypoallergenic ones, ever. If you need anything damp down there for any reason, then cotton wool and water only.

You can get QV products over the counter. Nystaform is prescription only.

Our dermatologist says that she should grow out of it eventually. DD has always had dermatitis in one form or another (at one point we had 5 different creams for different areas of her body and degrees of severity) and she has allergies, so I guess she is particularly sensitive.

another day I don't think she's reacting to the nappy cream as she gets these issues maybe once every couple of months and only uses the nappy cream when she starts getting a bit sore - to try and stop it getting worse.

I might look into a private stool analysis though. I use a lab for my sheep, hadn't thought to use one for my child!

She could have psoriasis - in people who suffer it is very common in the genital area and causes 'inverse psoriasis' which is just red rather than the usual flakiness (have a google and look at images if you are brave!). When i get it, it tends to hurt rather than itch.

Take pictures of it at its worse, take a video of her reaction to her distress because of it, go back to the GP and show them, cry yourself if you can and say it's horrible and debilitating and affecting all your lives with the washing and the clothes you buy etc etc. Ask where you can go next but a dermatologist sounds right.

Unfortunately using a shower/jug after weeing at home won't help her at school - she goes to the toilet quite a lot at school because of her seemingly tiny bladder!

ok this could be connected, is she drinking enough?

That's interesting WatchersCouncil - I'll certainly see about her getting referred to a dermatologist. Could take a long time though :(

Could she use wet wipes to clean herself after each time she uses the toilet at home? Or maybe if she is really sensitive she could use warm water and flannels. Dry toilet paper won't wash away all of the wee on her skin so if she is extra sensitive she may need to use water.

Also does she drink a lot? If her wee is very concentrated then it more likely to irritate her skin than if she drinks a lot and has clear wee. If it hurts to wipe she may try and drink less so she needs to wee less but this might make the problem worse by making the irritants in her we more concentrated.

I'd bath her every day and deal with the dry skin separately-I reckon being scrupulously clean would be a good place to start with this issue.