IMGAINARYFRIEND......how's your dd doing?

[foxinsocks]

was wondering how her rash is?

The pictures don't look like dd's skin either. She never bleeds and scabs. She looks like she's had a really awful sunburn around her mouth, chin, nose and eyes, with tiny watery blisters scattered through the red raw skin. And it feels so rough even the areas where you think it's not so bad, if you run your finger over or look at her with the light from the side you can see hundreds of tiny spots under the surface of her skin.

it could just be a nasty infection

hopefully MrA can get it sorted tomorrow.

I can't think what's left for them to offer her now. She's had every kind of steroid cream, antibiotic oral and cream, and all the non-steroidal creams available. As well as anti-fungal treatments.

And it's still spreading.

AAAGGHHHHH!!

I really hope MrA is good.

It sounds like she should be much more poorly with a fever, especially after having it for so long.

I've been thinking this through over and over and I'm sure the blisters on her genitals were there a good while before getting chickenpox. BUT the chickenpox affected her genitals much more badly than anywhere else at all on her body. She was in agony for days. They seemed to go and then we were left with the original problem from before chickenpox.

As for her face, she didn't get a single chickenpox spot there. And the soreness started in two small areas at the corners of her mouth around a month before getting chickenpox at least.

It's very confusing.

And yes, it's definitely spreading...

I read somewhere on the many dermatology sites I've looked at, that you can get the H Pylori stomach infection affecting the skin. She's had almost non-stop tummy bugs since Christmas so I'm also wondering if that's related at all.

good luck tomorrow IF

Thanks lou.

kerry, it doesn't look like cold sores and it didn't start like cold sores. I don't think she's come into contact with anyone with cold sores either.

I think it started with her genitals first then somehow her face became involved.

It covers a very wide area, if you imagine a circle running from the outside of the nose, around the mouth and over the chin, then that whole area (larger in total than, say, a drinks coaster) is bright red, as though all the surface has rubbed off and with tiny pustules embedded in it. The area around her eyes has mostly just pustules, on her eyelids too. And now her cheek bones are also affected.

So you see it seems very different to cold sores?

imaginaryfriend, just want to say I've been following this for months and I'll be thinking about you and your DD tomorrow. I hope you get some answers.

Thanks MrsHP.

And KM. I've definitely put the chickenpox on my list of things to mention.

I woke at 5am this morning fretting about the appointment today. It feels so important to get somewhere today. Dd was up at 6am scratching her chin and neck where it's spreading to as well. I have nothing to put on her skin when it's really itching as I'm not allowed to use so many things now and those that I can either hurt so much she screams or do nothing at all.

Fingers crossed for later. I'll fill you all in later. Thanks so much for the support, it's such a big help.

Just to let you know I'm thinking about you all.

Hope everything is ok

Dr. Atherton was brilliant and spent a long time with us, just over an hour in fact. He thinks it's this - periorificial granulomatous dermatitis. (I've put that link in because it looks the closest to how dd's face is at the moment. But it's not the best explanation of the condition)

So we're back on the antibiotics, have to wash using lots of diprobase and he's given a Eurax / hydrocortisone cream to put on to try to ease the itching and redness. The latter was a disaster tonight, she hit the roof with screaming as it made her skin burn so much.

It worries me that this could take months to clear up. Or even years as a worst case scenario. And there is a vague risk of some kind of sarcoidosis.

I feel very exhausted tonight, I think I've been so worried I've barely been able to think straight.

I'm not surprised you're exhausted tbh.

What is his plan of action from here (do you go back to him? is she having the biopsy?).

So sorry that there isn't anything that's going to make her comfortable quickly but I'm glad it looks like you have a diagnosis.

So hopefully, these antibiotics should make a difference fairly soon - is she back on the ones that were upsetting her tummy?

have just read that link and others - what a strange skin condition (also doesn't seem v typical that it is anywhere other than her face, does it). So it just 'happens' and then it just 'disappears'? I mean, I suppose it's good that it's self limiting but as you say, you don't know how long that will take.

Thanks for updating us, I'm sorry that your dd's treatment is causing her so much discomfort

Poor little lady. Lets hope this diagnosis is correct and that you can start to find a way to cure it.

Yes, I know, it does seem unusual that she's got it on her genitals and that she's not an Afro-Caribbean pre-pubescent boy! But he was so very certain about the diagnosis. he said he'd never seen it affect the genitals before but he couldn't see why not as it affects areas of thinner skin around mucous membranes - mouth, eyes, nose. So why not genitalas?

He didn't think the chickenpox outbreak was relevant because she'd already got the problem before having chickenpox plus if it was a herpes infection like that she'd have other symptoms and it would have moved more quickly than as gradually as it has.

He didn't know why hydrocortisone creams might sting - I'd mentioned that she's never been able to tolerate any on her genitals. The sensitivity of her face to them is a new thing of tonight because she hasn't had anything on her face like that for a few months now.

I think I'm going to stick with the antibiotics and for now ditch the cream. I can't put her through any more pain at the moment it's starting to really get to me.

And yes, fox, the tummy upsetting antibiotics alas. They're the only ones known to work and so we've got to try to weather the bad effects of them.

Dd was up scratching from 3.30-5.30am and looked wiped out this morning. I think I'm definitely going to give the hydrocortisone cream a miss and just see how she does with the antibiotics and the face wash. I feel quite low about it this morning, back at square one and not in control of the situation...

I think it said in your link (near the bottom) that the steroid cream can make it worse didn't it? (though I can see why he would want her to use it, to get the inflammation down)

when do you go back?