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

[foxinsocks]

was wondering how her rash is?

Hippi, the other thing is the feel of her skin. You can run your finger over the surface of her chin now and it doesn't feel like touching sandpaper. It feels smoother. The bumps are still there but not the same rawness. I think the fact that the consultant hasn't phoned us means it's one or other of options 1 and 2. If it were the 3rd option I'm sure we'd have heard by now so that's an enormous sigh of relief.

Thanks again for thinking of me

oh thank goodness if. That is such good news (and wonderful that it looks like it's not the worst option scenario).

the worst option was always a very long shot but enough of a shot to have us quaking in our boots! I really think we'd have heard now though. So it's either the periorificial granulomatous dermatitis or sarcoidosis. Hopefully we'll have it confirmed as one or the other in 2 weeks time.

I'm such a superstitious Jew though. I am worried to say it's looking better in case it all goes pear-shaped again. But I'm sure it is the case, I really do think we're very slowly turning a corner!

Phew, what a relief. So now I will keep everything crossed that it is the short - term one, so she will be clear of it by Christmas.

I will keep everything crossed for you and your lovely dd.

Thank you hippi. This morning it's not looking that great to be honest but I still think it's not as bad as it was 2 weeks ago, then it was really at its worst.

I received a copy of the report from the dermatologist yesterday which confirms it is definitely not scary option 3 but it could likely be option 2, a condition called sarcoidosis. It may also still be option 1 although he seemed to be favouring option 2 in his letter. So we can stop worrying about it being the worst option and hopefully have a good chat with him in two weeks about the other possibilities. If she continues to improve though I wonder if that will perhaps make him lean towards option 1 as a diagnosis ...

Is option 2 the longer term one? If so, I hope he is wrong and she continues to improve. If it is option 2, is there a chance it could be so manageble that it is barely noticeable?

I am truly delighted it is not scary option 3, and I hope your beautiful dd continues to improve!

Have a fantastic weekend.
xx

Hippi, option 2 is probably life-long but not necessarily affecting her face like this. It is a condition called Sarcoidosis. It explains lots of things that had us puzzled like a sudden (and very scary) inability to use her left leg in Easter last year. It's a life-long condition but seems to be in no way life-threatening, it can be managed and a full life can be led. It can occasionally have pulmonary complications but not necessarily so.

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Hi IF - I've been lurking on this thread, so sorry for not saying hello before.

Just wanted to tell you that my DH has sarcoidosis. No idea why he developed it as he doesn't fit the usual profile.

He has a few patches on his face and arms and gets a dry cough at times. He's had lung, heart, liver and kidney function and thankfully, there's no damage. He's now had it for a couple of years now and the patches do seem to be fading.

Hope you have a good conversation with your consultant. Best wishes to your dd.

Thanks AM and LF. We see the dermatologist again on Monday so if he confirms sarcoidosis then I'll more than likely have stacks of questions.

The really great news is that her skin really has improved in this last week. It's quite incredible to remember her little face underneath all that sore red bumpy growth. There are two almost totally clear patches on her cheeks and even the areas which are still the worst seem lighter, less angry, less bumpy. I can see how it'll be a long process to shift it and why the dermatologist said at least 3 months on the medication.

I'm tentatively feeling very optimistic now though.

Thanks again for all the support.

oh that sounds like good news

Waves at IF without reading the thread...hope your dds ok

(sorry thats sounds rude, on the beer and wont take it in...will read when sober now its on my active convos)

IF, I am so very very very happy it is clearing up! Doesn't matter taht it will take 3 months, the fact is - it is clearing up!!

Brilliant news, and I bet dd must be delighted!

Hello cc! I keep looking out for you on here but must keep missing you. I hope you're doing ok?

hippi dd's totally unaware that there's any real change. She looks pleased when I mention it but she's still incredibly uncomfortable and I guess she doesn't see the changes we see.

We're back to see the dermatologist today. Wish us luck!

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how'd it go if?

btw, tried to CAT you because I've not been around much but I don't think you can receive CATs?

I can receive CATs fox. I got one only yesterday.

Well, the dermatologist was as excellent as last time. he was slightly disappointed in dd's progress although we've been quite pleased over the last week or so. It's still quite deeply embedded in her skin and looks ready to flare all the time. There's also been a complication with her eyes becoming infected quite badly this week. So we have to continue with the antibiotics for at least another 2 months.

He did some other very basic tests on her too which were really interesting to see. In one he just very lightly ran the back of his fingernail down her spine then pulled her t-shirt down again. About 10 minutes later he got us to have a look and we could see that the area he'd touched was really raised and angry looking. He said she'd got one of the most reactive skins he'd seen and got a few colleagues to come for a look (I'm not sure if dd enjoyed this attention or not!). We've noticed this too, that any time her skin gets even slightly disturbed even by clothes rubbing it will come up in big raised wheals and get very itchy. She hasn't always been like this, it's very recent, the last month or so I'd say.

He's definitely leaning towards the periorificial granulomatous dermatitis option now although he said he still wouldn't say for sure until he saw a stronger improvement. I asked him how / why she'd got it when it's meant to be common in Afro-Caribean boys and he couldn't answer. He said he sees only 1 or 2 cases of it a year which is tiny considering how many kids he must see in a year.

Anyhow, we're just continuing now with the treatment and go back in another 6 weeks but have to call him if the eyes get worse or if it begins to deteriorate in any way.

how strange - maybe I can't send them. Because someone else didn't get one of mine either grrrr. Will try again.

Glad to hear that you've seen an improvement. How unusual about her reactive skin and brilliant that it doesn't appear to be the sarcoidosis option.

So another 6 weeks of the antibiotics? Is her tummy holding out?

Tummy's ok but she's been very tired and kind of under the weather for a couple of weeks. I'm glad it's the school hols coming up.

Hey, how's your dd doing?

she's ok. Had a bit of a scratching issue but it seems to have stopped (have no idea why). Both of mine have been getting lots of nosebleeds though, which is a PITA.

Mine, too, are very very tired. Can't wait for the holidays tbh. I hope that your dd may improve more once she's fully rested - being tired can't help.

IF - so a mixed result at the dermatologist? Is the per...dermatitis (urgh, don't remember the name) the short term option? So that is a good thing yes?

Fingers crossed it continues to improve.

Have just found this thread and read right through, what an awful time you've been having.

I'm sure you've already tried everything but I just wondered if you've thought about allergies to fruit? I had a terrible eczema-looking-rash with blisters round my mouth and eyes a few years ago which turned out to be caused by an allergy to tomatoes (and other acidic things). I don't suppose an allergy is causing it but wondered if it may be making it worse IYSWIM?

Sorry if I sound dim or suggest something you've already tried 100 times but your story really touched me and I feel like I want to help! I hope your DD feels better soon.

MoosMa it's not a stupid suggestion at all and thanks for reading through all this. I feel like it depicts quite a journey now.

We went through the allergy options quite early on and everyone we've seen thinks it's not the case. It seems quite definitely to be either 1 of the two conditions recently defined. Probably the peri-orificial granulomatous dermatitis one.

Speaking of the title of it, hippi, I'm getting some small and childish pleasure of saying it all the time to anybody who asks. It sure shuts them up! Yes, if it turns out to be that condition for sure it's the best option. Obviously it would be nice to still think it could be an eczema but the likelyhood of that is so small, especially as dd does also have eczema and it's very different in nature.

We're generally feeling an awful lot better about it even though there's still such a long way to go with it and we're totally mystified as to why she got it. It seems that it may well come back in the future. I'm looking forward now to it being totally gone and to this all seeming like an unpleasant dream. It would be so nice if it could be vastly improved at the end of the holidays before she starts in Reception.