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

187 replies

foxinsocks · 20/05/2007 20:52

was wondering how her rash is?

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foxinsocks · 20/05/2007 20:56

ooh can't spell...imaginaryfriend even

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foxinsocks · 20/05/2007 21:04

I can seeeeeeeee you

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foxinsocks · 20/05/2007 21:07

drums fingers

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foxinsocks · 22/05/2007 12:27

.

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foxinsocks · 24/05/2007 22:23

.

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imaginaryfriend · 24/05/2007 22:33

Hello fox!

Thanks for tracking me down. I could post about this all the time but I worry about being a dullard.

We saw the dermatologist yesterday who thought it was much worse than when he saw her last time so they're going to admit her and do a biopsy with general anaesthetic. We go back in 2 weeks.

It's spread to her eyelids and under their very bright light you could see how the pustules were just about everywhere. Very upsetting, especially for dp who came with me this time.

imaginaryfriend · 24/05/2007 22:34

Yesterday? See I'm going loopy. It feels like yesterday but it was actually Monday.

imaginaryfriend · 24/05/2007 22:36

Since I last posted we stopped the tummy-upsetting antibiotic and tried a very strong antibiotic cream which made it a million times worse. then we tried a different antibiotic which did nothing at all. The dermatologist said it has to be the tummy-upsetting one so she's back on that now. I feel so sorry for her because she's got to take it for such a long time and it makes her gag to take it and leaves her pale and off her food. BUT every time we stop it the rash gets so much worse immediately.

How's your dd?

imaginaryfriend · 24/05/2007 22:42

Ummm ... So where are you then?

imaginaryfriend · 24/05/2007 22:54

you've disappeared you sneaky fox! I'm off for the night in a moment. I'll see if I can track you down somewhere.

imaginaryfriend · 24/05/2007 23:01

Nighty night fox. Speak to you tomorrow maybe?

foxinsocks · 25/05/2007 09:49

sorry, if. Disappeared off to bed.

Poor, poor dd. Have you tried some probiotics for her tum or giving her some yoghurt to help protect it? She's very brave for taking medicine that she knows makes her feel awful.

Did the dermatologist have any more ideas or are they going to wait now for the biopsy? I'm glad they are seeing her quickly at least.

Dd is fine - she told me yesterday she was slightly sore and I can see the raised yellow sort of lumps (not pustules yet but the way the skin looks before those appear iyswim) so I'm going to keep a close eye on her over the next day or so to see what happens.

And, you know, it doesn't make you a dullard to talk about it AT all .

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imaginaryfriend · 25/05/2007 10:25

Hi fox, sorry I missed all your messages before, it's amazing how that happens.

The dermatologist is being frustratingly vague about it. They took some swabs on Monday but the GP's taken swabs twice already (face and genitals) and there was no yeast infection or staph or anything to note at all so I doubt they'll find anything different.

They're vague about it being an eczema as the rest of her body is fine. They do now think that her face and genitals are the same thing which might seem like nothing but is a bit of a breakthrough because trying to find a cause for two separate rashes felt a bit daunting!

Her face is a mess right now though, very very sore around her mouth and on her chin. The rest is mostly pustules and slightly pink. The skin feels very dry but I've been told not to use anything at all on it for now, not even a moisturiser. I think it's itchy for her.

I had thought her genitals were a bit better, she's been complaining less at any rate, but when I saw it under their lights I could see that there are quite a large amoutn of tiny pustules over the whole area - maybe 30-50. I think it's seemed better because she hasn't scratched them so they haven't broken open or crusted.

She's a trooper with taking medicine and generally putting up with things. She never really complains about being unwell (unlike her dad!), she's more likely to make a fuss about something like the label in her t-shirt sticking in!! She particularly hates this medicine though. I don't know if it's meant to be like this but the powdery bits aren't all dissolved, same as last time, and that's what makes her gag. I'm unsure if our pharmacist is crap or it's meant to be that way or it's just hard to make up.I've shaken it til I'm blue in the face and I can't get it to an even texture. She's putting up with it because I think she's really sick of her sore skin, of me and dp discussing her sore skin and of seeing GP's and doctors discussing her sore skin. Not to mention a couple of nasty comments from girls at school.

foxinsocks · 25/05/2007 11:24

have you thought of trying another chemist?

the 'bits' in the medicine, doesn't sound right

we once had powder that we had to make up but you really had to shake like NOTHING else, till your arm dropped off, and then all the bits were gone (and it had to be kept at the right temperature)

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imaginaryfriend · 25/05/2007 14:26

I've made it up myself and it's been fine. Somehow it seems that when they've made it up lumpy and it goes in the fridge no matter how you shake it after that it stays lumpy. The chemist is our nearest one and I always seem to have to get it in a hurry but next time I think I'll take it to one in town when I'm at work.

Hope your dd's ok, fox.

imaginaryfriend · 04/06/2007 21:02

You around fox? We saw the dermatologist again today and wouldn't mind rabbiting on about it to someone willing to listen...

lou33 · 04/06/2007 21:03

you can email me if, i was thinking about you yesterday

foxinsocks · 04/06/2007 21:05

would love to hear how she's doing!

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imaginaryfriend · 04/06/2007 21:06

lou, will you mail me? My computer wiped my email address book and I've lost yours.

imaginaryfriend · 04/06/2007 21:10

fox, we went back today after a further 2 weeks on the very strong antibiotics and their swab test showed that there's no candida or strep infections etc. But her skin is worse, more 'florrid' as they put it and with more pustules etc. We ended up with the consultant we've been seeing, his superior and her superior all looking at dd at once which was daunting for her - face and genitals, it couldn't get more invasive could it? And the answer ... They don't have a clue, they've never seen anything like it, they don't know why it's not responding to treatment and the only option is to refer her to the top paediatric specialist and do a number of biopsies. All of which is really frustrating given that we may have to wait up to 2 months to see this specialist and every day that goes by sees it spreading and more and more sore for her. I noticed some bumps coming up now over the bridge of her nose. This last month her eyes have become more affected.

I feel so enraged and frustrated I could

ssssssssssssccccccccccccrrrrrrrrrrrrrrrrrreeeeeeeeeeaaaaaaaaaaaammmmmmmmmmmmmmm!!!!!

lou33 · 04/06/2007 21:10

done

lou33 · 04/06/2007 21:11

oh if

imaginaryfriend · 04/06/2007 21:12

An odd thing I noticed is that after her swimming lesson in a highly chlorinated pool her skin is substantially less 'florrid' and bothers her less, for up to 2 hours really. I mentioned this so they've given her a basic anti-bacterial face wash and cream which I've applied and it does soothe things for an hour or so after putting it on. That must say something, surely?

I just wonder what this specialist is going to say that the others haven't said?

It's so hard for dd to be nearly 5 and surrounded by all her pretty clear-skinned little friends. I can't help but think that it's going to affect her confidence which isn't great at the best of times.

foxinsocks · 04/06/2007 21:14

have you thought about taking gluten out of her diet?

did they come up with any possibilities at all or are they just going to wait for the biopsy?

something in your favour - top doctors tend to love rare cases - (I know, obviously to you, this is more than just a case but thinking of it from their perspective) so I wonder whether this could mean that she gets seen just that little bit quicker iyswim. Also, don't forget to really tell them how much she suffers because of it.

I'm so sorry you are no nearer to knowing exactly what is up.

And how brave she must have been to have them all peering at her.

How are you feeling?

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pointydog · 04/06/2007 21:18

aw, hope your dd improves, imaginary. What a worry.