Severe eczema- clothing & bedding advice

[Sippingmytea]

Hello
My DS(5) has severe eczema across his face and body. This has happened very quickly and we are receiving care from a consultant dermatologist. Can anybody give me any advice about clothing - what we can buy to put under his clothes? Any recommendations for online shops? Also, any advice about bedding and washing? How often do you wash bedsheets, what temperature and how often do you vacuum the bedroom?

We’re feeling very overwhelmed as we have no idea at the moment what is causing it and why it’s spreading so fast and so severe?
Many thanks!

Poor love. I was bedding at 60 degrees so that it kills any dust mites and I hoover the bedroom and mattress once a week. We use Lidl’s non-bio laundry detergent which seems to suit.

Has he had any allergy testing?

Gp & consultant refuse to allergy test as they say it’s not worth it

I’m wondering about private allergy tests but also if we should wait for his eczema to get under control first?

It’s so awful. His face bleeds daily - yet the consultant doesn’t seem that bothered?

Oh bless him. What treatment are you on?
Have a look at the eczema society. They recommend certain base type layers and bandages for wet wrapping.

laundry - hot wash with little detergent. extra rinse
bedding - for covers any 100% cotton will do, for pillow/duvet go for hollow fibre washable.
clothes pure cotton, which can be washed at high temperatures
bar soap (only a little for pits&bits in bath and handwashing)

good luck

is there carpet in bedroom?

any mold/damp in the house? mould is a very common allergen.

Your poor son and poor you! My ds had very severe eczema at the same age and I know how tough and all-consuming it is.

100% cotton bedding is a good idea - try Dunelm for decent choices. We wash bedding on 60 degrees with fairy non bio. My ds was prescribed skinnies www.skinniesuk.com which were good for sleeping in.

Given the sudden onset at the age your ds is it sounds like it could be allergy related. I think I would definitely be considering private testing if you're not getting anywhere with nhs on that front. We did get da tested on nhs when he reached 5 but it showed no allergies to anything at all!

What treatments are you currently using? I appreciate its early days for you and you may well find a a way to manage it through your dermatologist - so much of it is trial and error with eczema and you just have to keep trying until you find something that works for you. We went through every possible option the NHS could throw at us over a period of about 5 yrs but unfortunately the eczema just kept getting progressively worse to the point where we were up most nights and he was missing school etc. Things got utterly desperate and spent hours searching for anything that might help - eventually we found a South African dermatologist, Dr Aron www.draron.com. We signed up and it's was 100% the best thing we ever did! Happy to give you more info if you're interested.

In terms of baths everyone is different but we've always found soap of any kind to be very drying and irritating so avoid completely. At his worst the only thing ds could tolerate in the bath was oats in a pop sock - sounds mad but has a soothing and moisturising effect. Otherwise there are loads of emollients available on prescription but again, it's trial and error to find which one works for you (unfortunately none in ds's case!)

We wash with a half dose of non bio, usually persil, with an extra rinse cycle on the advice of DDs dermatologist. She has special under clothes that we got on prescription, can't remember the name. At the beginning we underestimated just how much we needed to moisturise, we were told we need to get through at least a 500ml bottle per week. The very best thing we've had is a refferal to the peadiatric eczema nurse specalist, she's amazing. So knowledgeable & easy to contact during nasty flairs to adapt her treatment plan. Were using duoderm dressings with betnovate underneath on nasty bits and its improved things massively. Protopic has also been great for her face. We were told they feel it's unlikely allergy related but have put us on the waiting list for patch testing anyway just to rule it out.

Consider vitamin d testing... I had sever late onset unexplained atopic eczema (on immune suppressants, steroids etc nothing helped!) tried every cream, lotion, therapy etc under the sun. Got sunburnt accidentally, felt a bit better, saw my consultant requested vit d tests turns out I had low (not deficient) levels of vit d put on really high dose and literally within 4 weeks I was improving having had 3 years of hell. My sister said I'd looked like a burns victim.

Just re read & seen his face is a big issue. Protopic has been life changing for us, there are some potential side effects so it's use has to be carefully considered & I think it can only be started by derm not a GP but it's been brilliant. DD had extensive eczema on her face, we started it June time & her face was clear starting school in Sept even when she'd had a body flair that landed her in hospital a few weeks before.

Carpets in the bedroom. Symptoms started to appear 6 weeks after I repainted his bedroom last year. He also got a new bed, mattress & bedding at the same time. Symptoms initially were swollen eyes, purple circles under eyes. Then months later eczema- it’s spread like wildfire. It bleeds, becomes infected & continues to spread by the day.

Treatment at the moment is daktarin to treat his infected eczema- we clean it firstly with dermol. Cetraben on whole body twice a day. Elidel and eumovate mixed for flare ups on body. Consultant isn’t treating the worst eczema on his face - only applying daktarin at the moment, so the eczema spreads. He’s had 3 lots of antibiotics since November. I can’t see any improvement.

@singinggoldfinch I’ve joined the Dr Aron FB Group. I’m a bit hesitant to try it. I don’t know why. I’m keeping it as a last resort. We have an nhs appointment tomorrow where we’re hoping for a GOSH referral. I guess after that, AR is the next option. Although I’m not sure if I’m making a mistake & letting him suffer by waiting.

It’s so so hard. How much do I let DS suffer? He’s so little & only just started school. There’s so many creams & lotions.

What an ordeal sipping - the sudden and extreme onset must be so scary for you and your ds. It was much more gradual for us but still very frightening in the darkest times.

It does sound like you need to see if you can work out what's triggered it - hopefully your GOSH referral will help with that.

As for AR - I honestly can't recommend it enough and only wish we'd found him sooner for our ds who suffered so much for years before starting with him - BUT I can see that you might want to work through other options first, particularly the allergy testing. If I was you I'd want to know if anything preventable had triggered it. You definitely wouldn't regret going down the Dr A route though!!

If you are in London I think the Evelina London (part of Guys and St Thomas) are the specialist hospital for skin conditions.

If the eczema is that bad I would push for the most potent drugs possible. Is oral Prednisolone given to children? It’s a double edged sword, but it works.
Protopic is fantastic as well.

Extra rinse programme and no fabric softner at all.

What materials are the mattress, pillows and bedding made of?
Have you tried putting him in a different room for a few nights?
Ds had an awful asthma attack one night.
It was due to a tree outside because I had opened his window.
You have to go through absolutely everything.
Dd has allergic eczema. Oral antihistamines help a lot.

Is it general dermatology he's under or a peadiatric specalist? We got much better tailored care once we were reffered on to the peads derm team.
I'd ask them about mosturising, I think you need more than cetreben twice a day. We were mosturising at least every 3 hours before we got things under control. We're now on hydromol twice daily to work around school better, it's very greasy so we can get away with twice daily on the whole.

when dc had it bad, we used an emmoilent and then a barrier type cream on top of that.
but it's trial&error what works for you.
in the end it turned out to be hayfever & mould allergy and antihistamines work well for dc and the skin issues are mostly gone.
so look at the pollen forcast for your area.

If it’s been since everything in his bedroom has been changed, id be tempted to take out the carpet and swap to something natural like rubber flooring. Is his bed and bedding made from natural products?

Could you leave the window open as much as possible?

Get an Aloe Vera plant - use its leaves, you break them and use the clear liquid

Go to health shops for Aloe soap and they have great sun cream (just in case!) that also 99% Aloe Vera, you can get shampoo as well

Could be the shampo??

Look it up - it works

I would suggest getting wood/laminate flooring and damp dusting twice a week
Wash on 60-90 degrees and only 100% cotton sheets and bedding
Good luck

aloe vera is also quite a common allergen.

Our sudden eczema was a sudden wheat allergy and no amount of eczema treatments touched it until we cut the wheat out of 2 year old DS's diet. He already has multiple food allergies so at first we thought it was one of his established allergies, but no.

Sounds silly but have you repainted the room again since it first happened? Or tried moving him into a different room for a trial period to see if things improve?

Sounds awful for you all.

I’m allergic to Aloe Vera. Please don’t go near the stuff unless recommended by the dermatologist.