My heart breaks for my son with terrible eczema.

[L0309]

Hi all,
Looking for some advice and shared experiences please.

My son has eczema and multiple allergies, and we’re finding it really hard at the moment. His skin flares up regularly and the allergies just add another layer of stress — constant itching, discomfort, and trying to work out triggers feels never-ending.

We’re under the GP and using prescribed creams and steroids , avoiding known triggers etc, but progress feels slow and some days are just exhausting (and upsetting to watch him struggle).

I’d really appreciate any tips or suggestions from parents who’ve been through this.

is it worth going private? We don’t have a lot of spare cash but would do anything to help him.

my son also has adhd so getting him to apply cream is a huge battle.

the one thing that does help is steroid cream but there is so much on social media now about how bad it is for you I can feel myself not wanting to use it.

Not looking for medical advice as such, just real-life experiences and ideas. Thanks in advance — feeling a bit low and overwhelmed with this 10 year battle and would love some hope. ❤️

I have attached a picture x

Have you tried protopic? My dc’s eczema was very bad and it was honestly life changing for him.

Feel for him. And you! My kids have it. I was referred to a dermatologist and he was very clear that we shouldn’t be scared of steroid use and to use as directed. It stops the flare up and once settled down we continue with epaderm or whatever.

I only use eco friendly soap powder and no conditioner. That helps. Cutting out different foods made no difference.

No I haven’t heard of this. I will look it up.

how did you get it? How does it work? Thanks x

Wet wrapping with tubifast garments and epaderm would also help

I have hideous eczema, hospitalised for a week, had to take immunosuppressants for 2 years.

something that works for me is Ichthopaste bandages (you can buy on Amazon). Place over eczema, then put as much 50/50 ointment over it as I can tolerate, then cover again with cotton bandage.

I will say, none of my eczema has been shown to come from food allergies, however, loads of chemicals that make shampoo and things foam irritate me. I use products either as few ingredients as possible.

Allergic to dust mites too do hoover mattress and clean sheets. Non bio washing detergent.

lots more coming out about steroid creams so your right to be concerned, but it may be the only thing to help get it under control.

good luck helping him, it’s hideous.

It was prescribed by a hospital consultant initially when he was a young child, and has been prescribed subsequently by a gp. It’s particularly affective on facial eczema as it doesn’t thin the skin the way steroids do so can be used around the eyes etc. You do need to protect the skin from the sun afterwards but he has used it on and off for years with no issues. It was a miracle cream for him, he went from thickened, peeling red skin to normal skin in a fairly short space of time after years of issues.

Have you tried phototherapy?

Not cheap, I go to somewhere to use a Dermalux LED mostly for cystic acne but they have people who go for eczema and psoriasis too. Often focusing on face, hands and feet. I have a monthly subscription for £100 and can go for five sessions a month.

My brother suffered terribly and phototherapy made a bigger difference than anything, although was hard to access regularly on the NHS back then (he died nearly five years ago and it was probably 5-10 years before that that he had phototherapy).

Fellow eczema mum. I don’t have any tips as such just empathy. My DD 5 has gone to bed itching as she does also almost every night. We are using the strongest steroid cream available and I’m also worried about the risks.

She has identified allergies (nuts, diary, eggs) but it seems increasingly that she that intense itching is triggered by ultra processed food. Last Christmas we took her to drinks in a friends and she helped herself to crisps & sweets & had a huge reaction & since then I’ve noticed that UPFs like crisps seem to be an issue.

I find it really hard, I’ve twice had a talking to from a medical professional that we need to do more. I work and my other child needs help with school work. DD is very uncooperative when it comes to washing & putting cream on. So what could take 10 mins is a battle of wills.

Im embarrassed by her appearance she has big cuts on her face & it looks as if we neglect her.

It is so hard!!! Xxx

There are some new immunotherapy agents for severe eczema - Dupilumab is one but it would need to be prescribed by a dermatologist. There are long waits for outpatient dermatology in the NHS in some parts of the UK - where I am it’s over a year. It might be worth seeing a dermatologist privately initially and they can start treatment that the GP can continue. You need a medically qualified dermatologist though, not a cosmetic centre.

Also, a soak in potassium permanganate helped me, but it’s messy messy stuff. Turned our bath purple

https://www.bad.org.uk/pils/potassium-permanganate-solution-soaks

I’ve always been fine with using steroids to be honest I tend to trust the doctors, but I’ve had so many comments from people over the years that I shouldn’t be using them on him long term plus now all the TSW stuff on social media it’s really getting to me.

I feel so sad 😞 the problem is he would rather scratch and bleed than put cream on and it’s such a battle.

Hey op. DC1 had eczema as a baby which was initially triggered by allergic reaction to egg.

Absolutely nothing at all worked that wasn’t a steroid and we had to try a bunch of different ones. The one that eventually helped was Mometazone. Which ones have you been on?

I have this exact problem. DD will bleed to the extent that there is blood all over her PJs but won’t put cream on.

Oh love I feel exactly the same, some nights I actually don’t push the cream schedule just because I can’t cope with the arguments.

then on days like today I look at his skin and it’s like a visual representation of me being a rubbish mum.

I have cried so many tears over this in the last 10 years! It bothers me so much more than him.

your not alone x

I had this when younger and to be honest, much worse on my face as I scratched it in my sleep. I tried the uv light therapy, but like a pp, 2 years on immuno suppressants, cyclosporin, really helped. It still comes back when I'm stressed, but a lot less. I do keep eumovate on hand but barely use it these days, and yes, I was naughty and did apply it thinly to my face. It fluctuates through life, I do feel for him.

It's nothing to do with your mumness, although I get it's heart breaking that you can't wish it away. Keep nagging the doctors, and accept that sometimes you need to go hard core on the meds. No scented moisturisers, bath stuff etc, and I hope it simmers down for your lovely boy.

Things that made mine worse were eggs, nickel and penicillin, I had that patch test thing on your back done. If you haven't tried that it's worth a go. Wishing you both luck. I'm sure my mum cried over me, although I never knew at the time.

Organic oats in an old sock and run the bathwater through it, this stopped my youngest scratching his legs til they bled in his sleep. No perfumed laundry liquid (m & s do a good liquid about £5.50 for 50 washes for sensitive skin), no fabric conditioner. Simple soap/shampoo or faith in nature products. Eldest found Palmers fragrance free cocoa butter the best moisturizer, some of the ones from the GP smelt very chemically and made it worse. He has on occasion needed steroid tablets his was so bad when he was younger.

Yes, I found one washing powder that works and won't deviate. Happens to be person non bio, but I think non bio is better in general for eczema. And I'd no more buy fabric softener than I would fly to the moon. As simple as possible for most things.

You've probably already had this advice but sharing in case not... When my DS's eczema was bad, we were told to give him antihistamine (cetirizine hydrochloride) and that calmed the itching, which in turn helped the healing.

Auto immune paleo

It will work promise you

Dust can be a trigger as well as food allergies. Try not to go down the route of trying endless creams as people with eczema have open skin and can then react to the creams themselves.
Can you pay for a private allergy screen?

i suggest asking your GP for a referral to dermatology and see if you can go NHS before resorting to private. DS had fairly strong steroids (prescribed when he was a small baby) for weeks and months at a time, until he was well into primary school. The consultant was clear that the skin thinning effect of steroids is much less damaging to the skin than under-controlled eczema, so we were to use the steroids every time there was a flare until the skin was completely clear (ie not stop as early as we could when it was only half better).

this was in addition to shedloads of moisturiser etc of course. He tolerated the moisturiser better when the eczema was better controlled by the steroids.

Dust is definitely a problem, mine definitely calmed down when I moved to a place with hard floors.

I'd start with the patch test for allergies as said and work from there. He's a kid so probably find the idea of having to do the cream difficult as it's flagging that he's different, and I can empathise with that. But he's going to have to adapt a bit. Poor lad, it's a bugger and no mistake, but can be manageable.

My daughter is on this injectable and it has been life-changing. Her eczema was outrageous from birth (multiple food allergies and other triggers) and it was so hard to take her anywhere because she'd flare up and be miserable for weeks. She hates the monthly injection but her skin is so much better and finally healed (although she has some scarring/discolored patches still). I highly recommend asking a dermatologist about dupilumab.

That sounds brilliant, I'm envious that it wasn't a thing when I was young.