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!

[ReadingwithTea]

How is your DS at the moment? His eczema could be due to an allergy to one of the new items that was added to his room six weeks before his symptoms started.
In my experience, there can definitely be a delay between the initial exposure to the allergen and the appearance of symptoms. I had a bad and sudden case of eczema which turned out to be due to an allergy to something that I had started using two-to-three months before the eczema flared. This made it really difficult to identify what it was, and it was in desperation that I thought to remove that particular item, as I was trying to think of everything new that I had recently acquired. The symptoms cleared.
Try moving your son to a different room for a week. Also take out a selection of clothes and toys for him to use during that time. If his symptoms improve, you could then try to identify which of those new items he could be allergic to.
I really hope that you are able to find a solution soon.

[LemonysSnicket]

My doctor also wouldn’t prescribe anything more than hydrocortisone when I got it badly round my eyes and lips ( they thought I was allergic to my own spit at one point ). Eventually I got Pro-topic, an immunosuppressant, and eumovate - both for my face. My face, at least, is now clear.

[LemonysSnicket]

Just seen your update - paint. Paint seems to have exacerbated mine no end this year. Have you sealed the paint with anything or is it a chalky type?

[LemonysSnicket]

I’ve had eczema for my whole life and it is totally and utterly shit! Lucky you’ve got a consultant ... 22 years and no referral, am pushing for one this week.doctors are famously dismissive of eczema ... they don’t know what it’s like to have ants crawling under your skin 24/7. I’m going to get a private allergy test this year too ( when I can afford it) as have never been given one as, like your DS, it’s apparently not worth it.

In terms of clothes, pure cotton is best and make sure you check for itchy seams, hard thread, or embroidery. I also use pure cotton bed sheets and wash them once a week at 60 to kill mites. I vacuum bedroom every other day, though I’m in a new build with lots of dust, air pollution and flaky paint so may be able to get away with less for your DS. I also never ever use Bio washing powder/capsules as it is the devil incarnate.

I would recommend getting a humidifier and switching t on when he sleeps, it rehydrated the air and has helped somewhat with mine. Salt lamps are expensive but also seem to have helped some people as they purportedly purify the air.

Avoid any soaps etc ( I use my emollient as a shower wash) and make sure you moisturise him as soon as he’s towel dried to lock in the moisture. Also don’t make the water too hot, I tend to err towards just above luke warm.


If you’re wanting to try the diet route I would avoid dairy. Or cut it out completely. I’m trying to do this but am in the midst of a 6mo flare up so couldn’t say if it’s helping or hindering at this point.

[chewiecat]

In terms of bedding and laundry we changed to soap nuts so we don't even use laundry detergent anymore

It's a nut that is produced in Nepal or India somewhere which is used for washing!

It cleans well, no fragrance and is natural. It won't get rid of bad stains but does the job for day to day

Ecozone Soap nuts - Indian Wash nuts – replaces laundry powder and detergents – great value 1kg bag – up to 330 washes https://www.amazon.co.uk/dp/B00DI7J8AK/ref=cmswwrcppapi_C82uAbE16RKES

[chewiecat]

In terms of bedding and laundry we changed to soap nuts so we don't even use laundry detergent anymore

It's a nut that is produced in Nepal or India somewhere which is used for washing!

It cleans well, no fragrance and is natural. It won't get rid of bad stains but does the job for day to day

[chewiecat]

@Sippingmytea you need a clear bit of skin before you can do the skin prick test. They usually do it on the forearm so if that is clear then you can go ahead to do it

Dr lack also gave us some advice re managing his skin, plus lotions etc which I'm sure you have tried all sorts now!

Fwiw the cream that worked for us was aveeno baby and dermol cream but I think everyone is different and you may have to experiment with a few

DS has an infection on his face which the dermol cream cleared as it is antibacterial . No amount of hydrocortisone or eumovate could shift it but luckily dermol did!

[SingingGoldfinch]

Sipping - other dermatologists are definitely starting to sit up and listen to Dr Aron's regime. When we signed up a little over 3 years ago it was literally just him and then a U.S dermatologist started working with him and now the list of Drs following his regime seems to be growing all the time. I firmly believe it will (and definitely should) be common practice for eczema treatment in a few years time. I think there is inevitable concern from some quarters about the antibiotic element in the compound and sustained steroid use too - but the tapering down means the majority of patients use considerably less than they ever would have on conventional nhs treatment plans and in diluted form too.

[Sippingmytea]

@chewiecat thank you. I’ve just had a quick look at Dr Lack. It’s interesting that some doctors recognise a link between eczema & allergies, whilst others (including DS consultant dermatologist) refuse to accept any link. Do you think we would need to wait for his skin to calm down before we do any tests? His whole body is covered in flares right now. However is face is out of control - raw skin, bleeding etc. I’m a bit scared to do anything until we sort his face out or at least calm it down.

[chewiecat]

It's so hard to know exactly what is the trigger , so I totally understand your pain op

DS was rubbing his face raw and his whole body was covered with it. It eventually went away so we don't really know what it is

We had an allergy test with dr lack who confirmed egg allergy. We then were referred again by the eczema clinic to the allergy clinic with nhs and it was the same egg allergy. We did the skin prick test for both

They also tested for cat allergy which thankfully he was clear! Phew

[chewiecat]

It could be food related

If you are can afford to go private for an allergy test, we went to Dr Gideon Lack , he was recommended to us by the eczema clinic

It cost about £250

[RatRolyPoly]

Skin prick testing can identify environmental allergens as well as food allergies, although not always. Ds was tested for dust, cats, dogs etc. along with other food allergens on his last skin prick test (and came back positive for cats).

[Sippingmytea]

It was the same carpet he’s has since 18 months old. However, I repainted his bedroom with Dulux paint. New bed is wooden. Could it be the paint that triggered it? His allergy symptoms didn’t begin until 6 weeks later?

[brownelephant]

has the new carpet wool? latex backing?
is it glued or tacked?

glue, wool, latex - all common allergies

[Sippingmytea]

No pets as I’m allergic myself to dog hair.

I’d like to avoid him having to have any bloods taken too as I think it would be very traumatic. DS has only just got over his age 3 injections. Maybe a skin prick test would only identify foods?

Today we’re off to see his consultant after school. I don’t have much hope in the doctor though.

[HJ40]

Another thought - do you have any pets OP?

I had private testing done at the New Victoria Hospital in Kingston. Bloods came backs allergic to everything - cats, dogs, horses, dust, mould, more type of pollen than I knew existed. Skin tests can back negative for every single ingredient. It was completely unhelpful, but I guess if you did get a positive then that would be useful.

[Sippingmytea]

@singinggoldfinch I agree - the AR method does make a lot of sense. My DS has had a recurrent bacterial infection on his face which isn’t responding to treatment at the moment. I’ve spent hours on the Fb page reading other families stories - I think my scepticism is that if it is such a good treatment plan, why aren’t the hospitals and consultants paying attention? I think that if things continue then we will sign up directly with Dr Aron in March. We’re on the outskirts of London & I think there’s a pharmacy (Landy’s?) that will mix the creams. Our local pharmacy is awful - they suggested a chicken pox relief cream the other day

Thank you to everyone that has replied. In the last week we’ve made a lot of changes to bedding, clothes & washing. There’s some very helpful advice here that we’ll be looking into ASAP

On another note, the consultant & Gp are completely against looking into allergy testing. Although I’ve heard that GOSH might look into this one we get seen there - I hope it’s not months of waiting but I can imagine it will be. Has anybody had private allergy testing done in London? Any recommendations? My gut feeling is it’s environmental allergens but my DH also thinks it’s maybe gluten/dairy related. I’m not sure since this has come out of nowhere. DS is 5 & never had any allergies or sensitivity to food.

[FreshsatsumaforDd]

Also we used aqueous cream as soap with Balneum bath oil.

Then Diprobase cream which Ds still uses.

[FreshsatsumaforDd]

Consider removing dairy products and egg just for one week and see if there is any improvement.

Buy dust mite covers for mattress and pillow.

Wash ideally cotton bedding at 60 degrees. We used Filetti. No conditioner.

Put soft toys in freezer for 24 hours then wash and limit to one at a time in bed.

Vacuum under the bed and clear any excess toys/clutter then damp dust room.

Good luck.

[Pookalooks]

Severe eczema swallows your life - so sorry to hear you are going through this. It is worth pushing for allergy tests - my DD has eczema and allergies which manifest as rashes. Anti-histamine deals with the allergies pretty effectively and her eczema consultant has prescribed a daily anti-histamine. For the rest, cetraben didn't work for us - it hurt her skin. The only thing she will always tolerate is epaderm ointment - very greasy but she calls it her soothing cream. At least one 500g tub a week. Like another poster protopics did not work for us - and were extremely painful. We have found weekly dettol baths to be useful in terms of keeping infection down and used aquaeous cream as soap (never emollient). We use steroids liberally when flaring - the stronger the better as you use them for a short period and the flare doesn't get established. Bed linen washed with extra rinse and no softener at 60 and clothes at 40 - always with extra rinse. Pure cotton clothes - Sainsbury's do soft PJ's, and H&M do really soft vests and leggings. Scratch sleeves for sleeping and car seat / buggy. Keep the bedroom cool - eczema children are often hotter than normal. The Evelina is brilliant - and they have an eczema education programme which is really helpful, esp when you are just starting out. Good luck!

[SingingGoldfinch]

I'm not surprised you're finding it overwhelming Sipping. Severe eczema completely takes over your life and to have that suddenly thrust upon you must be really difficult. People don't always fully appreciate that impact either - I think other people without direct experience can often see it as a minor irritation rather than the all consuming illness it actually is.

We registered direct with Dr A over 3 years ago, before the London Dr was offering this treatment. I know exactly what you mean about it seeming too good to be true. We had the same concerns and after trying so many other things that promised so much (including, I have to say, salcura) with no luck at all, we were very sceptical. However, it was absolutely the best decision we ever made and from the second day of treatment we literally haven't looked back. We're now just applying the cream once or twice a week on a couple of stubborn spots - we were applying 6 times a day at the start of treatment! The treatment just makes so much sense.

[HJ40]

Poor DC and poor you. Please keep pushing and don't accept things as status quo if he is still suffering flare ups. My childhood and teenage years were blighted by it, and it was only when I changed GPs after leaving uni I finally found a regime which works. I'm almost 40and sadly still haven't grown out of it, but can mostly manage it. I've also done a lot of reading/research and built it into what products I use. Others may disagree, but here's what I've found works:

• Non bio washing washing products actually don't clean well enough. I use Ariel liquid at 40 and it's fine. Don't use a powder as it will contain bleach. When I use non bio, I get flare ups
• Avoid scented laundry stuff such as Bold or Surf and fabric conditioner, it's often the fragrance that causes reactions rather bio stuff
• Avoid bar soap as it's very alkali and pulls moisture out of the skin. I think you mentioned Dermol which works well instead of soap.
• Even plain water is actually a more alkali pH than skin naturally is, so again, draws moisture. the second DC gets out of the shower or bath, need to cover him from head to toe in a moisturiser. I've tried so many and some are vile waxy pots of gloop. Actually the one I've found works is Aveeno. You can get it without prescription to try -get the cream not daily moisturiser - but if it works ask for it on prescription. As a bonus it's not a bad consistency and soaks in quickly.
• Moisturise 'exposed' skin (hands and faces) two or three times a day, more so in winter

-Ideally moisturise hands after washing hands, every time

• You should be able to get a cream or ointment for the flare ups on his face. If it doesn't work after two days ask for a different one

It's a complete faff but well worth it. I'm so envious of DH who can just get out of the shower and pull clothes on, but it's what it takes to keep it under control. Good luck.

[Sippingmytea]

@toomanynamestoremember somebody else mentioned Salcura cream to me. I haven’t tried it yet - his face is the most delicate area at the moment. As in it bleeds if you touch it & it bleeds after we apply cream to it. It might be worth looking in to putting on his body though to see if it helps. With his face though I’m very scared to try anything other than what his dermatologist says - at the moment just dermol & daktarin to kill any bacteria.

Thank you all. Right now it feels like we’re in a nightmare. I had no idea that eczema could be so awful and take over DS & our family’s life.