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

[foxinsocks]

was wondering how her rash is?

Yes, you could see how flummoxed they are. Being of a paranoid nature I kept thinking they must think it's something I'm doing wrong.

I asked over and over if they had any idea but they said they were stabbing in the dark and wanted to eliminate things like childhood lupus, i.e. it could be a more serious condition that is manifesting itself in her skin rather than a dermatological condition.

I did ask about diet and they said with gluten she'd have constant chronic diarrhea which she doesn't. I explained that she often has bad tummies but that could be due to all these bloody antibiotics. And they said the link between dairy and eczema was very tenuous and unlikely to be beginning now, plus she'd have problems elsewhere on her body and not just these areas. The rest of her skin is perfect.

She kind of copes with being scrutinised but she's very very silent when it's happening and I can tell, knowing her, how self-conscious she's becoming. It's partly because their bedside manner is extraordinarily bad! I know when we've seen paediatricians for her asthma how they've talked to her and been friendly but this team seem to treat her like a small animal and rarely address a single question to her. There was a student doctor in their today, a young woman, who talked lots to dd and you could see the difference in her. As soon as she heard the other doctors coming back she leapt onto the examining couch and closed her eyes, lying in a fetal position. Horrible.

hmmm, not sure about the diarrheoa side - there are plenty of coeliacs on here who didn't get that side of it (and not everyone has the same symptoms) but if it is something like dermatitis herpetiformis, that's exactly the sort of condition they would pick up in the biopsy.

Have they taken blood from her yet then (if they are looking at other conditions)?

I'm glad the antibacterial is doing something.

Btw, have you had a word with the school? (just to warn them about her feeling a bit sensitive about it all - just so they keep a weather eye on her).

They have taken some blood today. And yes, I've spoken to the school as a couple of girls had started saying some nasty things to her - one said 'xx isn't pretty because she's got spots all over her face' in a discussion about who was pretty (apparently) and she's been called 'messy face'. Mostly they're just asking me and her what's happening with her face.

Fortunately the most hip teacher who they all adore also has eczema on her face although you can barely see it. I think I'll have another chat with her tomorrow.

oh gawd, how awful. Small children can be so hurtful (without realising it iyswim).

So how long till the biopsy do they think?

That's good that they have done the blood now - so hopefully, in what 2 weeks time(?), you'll have those results which should be able to shed some light on whether there is something else going on (hopefully, there isn't and that will put your mind at rest).

Although in a way, it would probably be wonderful to be told it's X and here's Y that will fix it, wouldn't it .

Yes, I'd just like a 'cure' now. My big worry is that it'll keep getting worse and worse. It already seems impossible to imagine her with her 'normal' skin. It seems so ingrained. The whole area which is most affected on her face is very pale, almost mauve, around the raised pustules, red patches. And as for the genitals, i barely look there these days but seeing it again today I felt almost nauseous. There must be about 50 tiny raised pustules there now, plus it's spread up her bottom and is in small patches on her buttocks. That's been itching a lot lately, I hadn't realised it had spread there though.

I don't have a timescale which I think is very frustrating. They've put in an urgent request for the Big Consultant but couldn't give me the slightest clue as to when an appointment might be. Somewhere between 2 weeks and 2 months. Same with the biopsy.

I reckon, in terms of 'what more will he be able to do', the very reassuring thing about seeing Top Dog is that they have the power to make and take decisions. So if he wants something done, he'll get it done whereas all the other people you've seen so far probably have to defer to others/adhere to protocol iyswim.

That is frustrating about the timescale. I hope you get to hear soon, I really do. I'm glad, at least, the bloodwork is taking place while you are waiting iyswim.

How strange that it appears to be spreading. Must be part of whatever it is.

oh IF, i didnt realise things were so bad.

misdee I could post about it all the time but it seems like nobody has experience of anything quite like this. It really does seem to be rather rare and strange.

fox, it's spread such a lot. I got a film developed from earlier this year and was looking at her face in the photographs. In early January she had two tiny patches about the size of 5p coins, on either corner of her mouth, and a tiny pink area on her chin. By the Easter holiday those patches had doubled and her top lip was looking very red. Then by my birthday last month she was flame red and her eyes were getting very sore. Nothing seems to be even containing it, let alone curing it.

do the docs you've seen send for the appointment with Top Doc?

I wonder if it is worth going back to the GP and telling him/her what has happened (I know they get the letters but all the admin can take ages) and just pleading with him/her to see whether dd can take a cancellation appointment or even if he/she give you any indication of how long you're going to have to wait.

I think you need everyone on your side to try and get that biopsy asap.

Yes, the docs I've seen are arranging it internally. But I think I may go to the GP and get her to start some hassling if I haven't heard anything in the next week or so.

They're a rubbish lot, honestly, very disappointing.

Just chatted to dp and we were both saying we need the biopsy.

it is so hard, isn't it. And the way hospitals work and the health authority etc. is so complicated.

To get an appointment with the gynae who had a speciality in a certain condition I had, my GP had to present a case for it at some awful health authority meeting otherwise they wouldn't fund it because this gynae happened to be based in a neighbouring London borough ffs! He was just round the corner!

It is definitely worth having the GP on side. I only hope that Top Doc sees the case notes, realises how urgent it is and fits her in asap.

fox, the red tape is ridiculous. I was lying awake this morning at 5am working myself up into a state about going today as dd's skin has been so bad over the half term holiday and I knew I'd come out feeling very frustrated. I kept imagining myself storm-trooping into some high up dermatologist's office and demanding he look at dd NOW and tell us what's going on.

Poor dd was fast asleep next to me (I'd got in with her as I often do when I'm worried about her) totally oblivious to my mental adventures.

IF - I had no idea your poor DD was so poorly! I do hope this 'Top Dog' consultant's appointment doesn't take too long - the nice thing is that once they've seen someone like that the consultant genrally can get in touch with other such specialists from all over and get to the root of what's going on.

As I'm waffling away her your'e probably thinking 'who's that? - changed my name but had a long chat with you a while back about headaches (how'd that go btw?).

What you said about the chlorine thing struck a cord - I got this soap when I was pg because I had PUPPP and it was the only thing I could use that eased the itching - let me know if you're at the point of trying anything as I have an unused bar left (I imported it from the USA so you can't buy it here). It's basically a soothing herby soap, smells a bit minty

Lots of luck to you...

I feel awful for all of you. It's so frightening when something is wrong with children and no-one can figure out what's going on.

Like you say, the uncertainty is dreadful. If they could just TELL you when everything is going to happen, it would be so much better.

teafortwo did your original posting name have an L in it somewhere? And what's PUPPP? The soap sounds interesting...

Fox, exactly, just to have a time scale and a plan. Feeling planless now is horrible. We don't even have an appointment or a single cream to put on to ease it. Nothing to try.

let us know what happens if - I really have everything crossed that they get in contact with you soon.

Will do, fox, thanks as always for listening.

Did your dd's itchiness turn out to be nothing by the way?

well, she has got quite bad hayfever at the moment and also, I've been baking a lot with her (over half term). She had an egg, milk and soya allergy as a baby - although she has outgrown them all (i.e. doesn't have a massive reaction when she eats them), I now have a sneaking suspicion that the poor child is still egg allergic because I made a pavlova yesterday and she had some of the egg white and had quite a dodgy stomach (but this is WAY better than what her reaction used to be, if indeed it is a reaction - and it is delayed rather than immediate).

So, I'm wondering now if all this is connected. I really have no idea if truth be told! She does seem to harbour problems down there - I just hope she outgrows it. But luckily, (touch wood), no return to how bad it was last year (but it all started late summer I seem to remember).

I like listening tbh - I can remember how frustrating it was when dd went through similar (though obv your situation is far more pressing ). I just wanted to bang my head against the wall and drag her into hospital screaming 'just SOMEONE, do something'.

Fox - just this minute had a call from St. Thomas' Hospital and they're going to see her urgently next Monday so that was way faster than I'd imagined. I don't know whether to celebrate or start to get really worried ... But mostly I'm glad there's a plan again. i'm a woman who needs a plan, I don't do limbo very well.

Our dd's do have quite a lot in common. Dd has bad hayfever at the moment too and is quite wheezy. She also had food allergies as a baby - dairy, eggs, nuts and fish. I ended up breast feeding her for ages because she wouldn't drink soya milk although she kind of got into chilled goat's milk at one point. I'd really like to ask more about the possible allergy side of this. She does have problems with her tummy - bloating, feeling achy and sick after just a little food. She also seems to produce quite vast quantities of poo given that she eats such a little. But that's probably just irrelevant and TMI. It would fit in some ways for it to be connected to her tummy because it's focused around her mouth and genitals although why her eyes would have got involved I don't know. She's also had a load of tummy bugs this year - 4 since January, 2 very nasty ones. And chickenpox. And bronchitis.

thast great news IF, keep us updated

oh thank goodness IF. I think it's something worth mentioning (her allergies, tummy, general health), definitely. Dermatologists must be used to looking for allergy connections anyway (in a way, wouldn't it be wonderful if it was something as 'simple' as gluten iyswim).

I am delighted they have classed her as such an urgent case (and rightly so). I can understand how worrying it must all feel.

Can dh come with you on Monday?

yes he can. It's fortunate for him that all the clinics are on a Monday and unfortunate for me. He's on dd duty on a Monday and I'm normally at work so he doesn't have to alter his schedule but I keep having to take days holiday / switch days in the week. He's come with me the last two times, mostly so that he can nip off with dd if she gets fed up and I can talk to the consultants although it hasn't worked out like that, he's sat in the whole time. And of course he's worried about his little precious girl so wants to know what's going on.

I am worried but I'm looking forward to seeing this particular person. I've googled them and they look good.

Yes IF, I used to have a name beginning with L but a relative of mine joined MN so I thought I'd retreat into anonimity!

I am SO pleased to hear your DD is being seen so soon. Try not to see it as a 'should worry more' thing, when she gets seen won't change what she has so worry the same amount and be pleased it'll be investigated asap - sure you know that anyway.

PUPPP is an incredibly itchy but harmless rash some people (rarely - how lucky am I? ) develop in pregnancy. It's thought to be an allergic reaction to baby's DNA mixing with your own - weird!. Anyway, I didn't find anything that took away the itchiness but the soap helped it a bit - depends how much it's bothering your DD. I got it from this company: rainier soapworks (it was about £10 for 3 bars at the time)

Anyway - good news from you, hope it keeps coming!

Thanks tea! Yes, you're totally right, having something confirmed or not isn't going to change the nature of the thing is it? I just suddenly felt worried that the NHS has come up with an appointment so quickly!