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

Nothing useful to contribute - except that I could have posted this myself tonight. My DD (16) is in the midst of a flare that we just can’t seem to get under control. She is better at using the creams (we used to have that battle all the time) but currently it feels like they are making it worse. No idea how to make it better at the moment and everything I read suggests something different. It’s heartbreaking to see how much it affects her.

DD has had bad eczema on arms and legs since she was a baby, when she was younger she would scratch in her sleep to the extent that she’d wake up covered in blood and we’d have to resort to bandaging her up every night to try to prevent it. Over the last couple of years we seem to have cracked it in the main. She flares up with heat and hayfever so the winter is usually pretty good but as soon as tree pollens start in February she goes onto daily anti-histamines and we start adding in extra moisturiser. If we can keep up a steady regime of cetraben or zerobase type thick moisturisers morning and night as well as the anti- histamine then it doesn’t flare up and we don’t end up in the itch-scratch cycle so it’s more manageable. If she starts scratching then we have to act fast with topical steroid creams and thick barrier creams then wrap that patch at night to prevent it becoming a red sore open wound.

She does not have daily baths or showers, she washes pits and bits daily for hygiene but only does a full body wash 3 times a week because anything more than that dries out her skin, and the water is warm not hot, no scented or harsh soaps or shampoos, we have found that Head & Shoulders has worked really well on her scalp and she also use it as a face wash on the advice of a dermatologist as it contains pyrithione zinc, but only a couple of times a week and followed up with moisturiser.

She’s started getting annoyed that she can’t use all the faddy popular skin care her friends use and she sees on social media but so far everything she’s tried has left her with red patches on her face so her desire to keep trying is thankfully waning and I will hopefully avoid biting my tongue off trying not to say ‘I told you so’. That was a particularly hard challenge on Boxing Day when she used a new cream 2 hours before going out to lunch with the in laws and then came to me crying. Thankfully an anti- histamine and several cold compresses reduced it to a bearable level for her before we left the house.

That's a really good point re girls getting into 'skin care' at very young ages. The brands will not help kids with skin problems, and peer pressure is immense.

I wouldn't be surprised if some current 9 year old ended up with skin issues from this current craze.

Just remember that everyone is different.

I have to mix Protopic with aqueous cream as it's too strong for my skin and I wake up feeling like my fact is burning.....
What allergy testing has he had so far?
Push for more if you need to - I can remember going to school with my hands bandages and the backs of my knees bleeding from bad eczema......

It's awful, I feel so sorry for your son.

I avoid milk & fish, bio washing detergent, a few chemicals that I react to (identified by patch testing) and take a strong medication to reduce inflammation but, even with all that, I still get random flare ups where I just don't know what triggered it.....
I always select the "extra rinse" button on my washing machine and won't use anything that smells too strong (e.g. Fairy Non-Bio Platinum, terrible smell and a trigger for me, even though the normal Fairy Non-Bio is absolutely fine)

There are quite a few options asides from creams and steroids but you need to be referred to dermatology first.

Protopic. It basically cured my child's eczema. Absolutely life changing. Can only be prescribed by dermatology consultant as I understand it.

What doctor 101 said - Dupixent is what you need.

My daughter has eczema, the lotions and potions basically don't really cut it.

She's been taking Dupixent for almost a year and her skin has vastly improved.

Massively improved her life basically

I battled horrific eczema for almost 30 years. I have been eczema free for 5 years now, following a visit to an expert dermatologist and some of my own education. Things I did:

No soap, not even “mild” or eczema soap. Used dermol or 50/50 ointment (apparently this is old fashioned now but worked for me). Banned things like hand sanitizer or perfume, nothing chemical on the skin. Did not even use shampoo, just 50/50 ointment (only for an initial period as a “reset”, as even the shampoo running down my body being washed off set me off)

No creams, only petrolatum (Vaseline). Applied regularly and instead of scratching. Game changer. I got a huge tub for £1 from Poundland.

Stopped all steroids. This was really, really hard. The withdrawal was long and difficult and I nearly gave up quite a few times. Very much worth it long-term.

The hardest one: stopped scratching. So much easier said than done. I scratched in my sleep as well, so that was hard. Instead of scratching, I visualised myself scratching the spot. Really visualised it. It works surprisingly well. If I ever accidentally scratch, I make a strong effort to not touch that spot for days.

My skin is always itchy still. I cannot emphasise enough the emotional relentlessness of being constantly itchy, I am never comfortable in my skin. However, my skin is now very healthy, no cracks or blisters. Just itchy but never scratching. It’s one of those things you learn to live with.

I had horrible eczema as a child. There are much better treatments available nowadays but you have to see a dermatologist to get them.

I know you will have had so much advice and that you are probably sick of hearing these things but just in case anything here is useful...

Once I grew up and started preparing my own food I was more easily able to find some of my triggers. I'd been brought up on soya products as it was thought I was allergic to dairy but in my early twenties I realised I have a low level allergy to soya. Cutting it out my diet made the most difference to my eczema, more than all other measures put together.

My mum had been told to lock in moisture by putting my creams on while my skin was still wet straight after a bath. I now know that doing this inflames my skin. For me, it was better to allow my skin to dry for a few minutes (definitely no rubbing with a towel) before applying cream.

And my skin doesn't appreciate the thick petroleum/aqueous preparations that I had as a child either. I used urea creams for a few years which worked well and now use Aveeno skin relief. I know other eczema sufferers who have had success with Aveeno skin relief but it's a massive leap of faith as it's so much thinner than the creams/ointments GPs prescribe.

The last thing I'll mention is that I only ever wear cotton next to my skin. I can still feel how awful my school shirts felt thirty years ago as they had polyester. My own DD had 100% cotton school shirts. And all my bedding is 100% cotton. I never use fabric softener and I put less detergent in the drawer than the suggested amount. All washing is well rinsed.

My son was the same and after some research into leaky gut (he has allergies too and has been referred for adhd and autism so there is a link to gut health) I started giving him Kefir (the one I use is from modern milkman). His eczema went within 3 days, I'm still in disbelief and it's been 8 months. If we miss a few days it starts to come back. It didn't work for my friends little boy though so not for everyone but worth a try.

So sorry you're going through this. It's really hard!

Here's how a private pediatric dermatologist described it to me: the steroids work on the top layer of the skin, as a healing aid. But they don't affect the lower layers, which is why you don't stay healed.

Protopic is an anti-inflammatory (not a steroid) that does work at deeper levels, so it will heal the skin eventually. But it stings if applied to broken skin, so you have to use a steroid like mometasone to get the skin in good enough shape first.

She recommended stretchy cotton anti-scratch sleeves from Amazon. The child wears them at night over the cream and it stops them scratching. (My DD found them uncomfortable though)

Dermol is good for washing because it helps cut down staph bacteria on the surface of the skin. Some think eczema may be due to an imbalance in the skin microbiome.

It took 14 months for our NHS referral to come through - good luck!!

One thing that really helped my nephew was porridge oats. We used to put porridge oats into a sock and tie it onto the bath tap so that the water ran through the porridge before going into the bath. He did this every couple of days and it really helped him

we started getting stuff from a company called wild and wood and the difference it made was crazy

this is in no way a cure but it really calmed things down for my nephew

Not eczema but one of my DSs had absolutely terrible cystic acne. The NHS faffed around with ineffective creams and ointments until eventually my DH took DS to see a private dermatologist. It was expensive but not ridiculously so, and she got him started on proper, effective treatment. We did have to pay for private prescriptions as well so take that into account if money is tight.

Omega supplements can be beneficial from a cellular level for eczema as well as mentioned above probiotics and prebiotics. Have you undergone allergy/ intolerance testing?

Hey OP, sorry if there’s some repetition - I lost my post and can’t see it above but maybe it will appear & having probs with capital letters.
sorry you and your son are going through this: eczema is awful.
I think what helps and what triggers it are very individualised. My son suffered terribly from 0- 3 to 4ish. he looked like a victim of burns. His skin was raw and he was constantly trying to scratch. I used to have to sleep with him to basically restrain him. All the gloves, sleeves etc couldn’t contain the drive to scratch.
steroids helped control the symptoms a bit - I remember some lectures from pharmacists about their ongoing use, when the dermatologist told us the opposite. My son also had allergies to dairy, egg, peanuts (EpiPen for these) and lots of other foods caused reactions.
He’s 14 now and no longer has eczema or allergies where we have to avoid things and carry adrenaline.
What seemed to help for us was actually stopping moisturiser and anything on his skin whilst slowly reducing the steroid/medication ointment. less washing and when he did wash, no soap etc. No chemical house cleaning products, synthetic fragrances or detergent.
All natural, breathable fibres.
Like someone else above, I bought into leaky gut theory. Followed a bit of a bat shit crazy Dr’s diet to (allegedly) heal his gut (easier because he was young so less able to be fussy and I was breastfeeding for some of it so knew he was getting basic nutrition).
The positive thing about his allergies was that I started reading food labels and became aware of how many additives are in basic foods. We continue to avoid processed food as much as possible and try to eat foods to promote diverse microbiome. Now he’s a teen he eats a lot of crap at school and out of home, but seems like his system can cope better.
We lived in Australia until a few years ago, so we had to see private dermatologists, allergists and paediatricians (there’s v limited free healthcare there for some things). We spent an absolute fortune. Quite honestly in retrospect, wasn’t worth it all for us for the dermatology, but sounds like some people here have had good experience of other medications and preparations.
FYI, the dermatologist and allergist both told us there was no link between diet, allergies and eczema - I just cannot accept this.
Hope you find some things which helps.

Have you watched The Bad Skin Clinic? Emma, the doctor, has had a few people with the most awful excema nd she has given them various treatments which have been life-changing for them. Worth ploughing through her programmes to see what she has to say and what she offers.

Hi op. I’m mum to a dd who’s had severe eczema since she was weaned. Multiple allergies. Life was hellish for many many years got her. Steroids simply stopped working for her and she ended up being hospitalised over and over again with infections. Until we got a dermatologist who suggested methotrexate. We weighed up the pros and cons then ultimately let dd decide. She was 12. It completely changed her life. It took around three months to take full effect but she’s gone from being 80% covered in eczema to 5% manageable with emollients. It is an immune suppressant but apart from some nausea on the day she takes her methotrexate (it’s taken once a week) we’ve had no side effects. It’s been a wonder drug. Now she’s late teens she’s weaning down and is now only on a small dose and no rebound of eczema so far as long as she watches her diet.

best of luck. I still feel so sad when I think back to those days and I really feel for you and your son x

Have you tried grounded body scrubs for eczema they’re fantastic. Also red light therapy is good too. Good luck!

My ds had horrendous eczema but it was gone within two weeks of cutting out the right allergen. We had to put him on a total exclusion diet to do it, which was brutal but it helped us figure out safe food from triggers far more clearly.

Look up Alba Health. Nora Cavani completely cured her eczema through dietary changes. Poor gut health massively contributes to eczema. I cured my dishydrotic eczema by improving my diet and cutting out dairy. I hope you find a solution. Good luck.

Have you tried him having a bath with a handful of Bicarbonate of Soda - it's very good for itchy skin conditions like eczema and chicken pox. If he'll let you I found that washing/moisturising with Epaderm or whatever you use after the bath was more helpful than the Hydrocortisone Cream and only used that when the skin was broken. As an adult - the eczema is reasonably under control now with the moisturising only routine - but it is miserable thing to have to live with.

Try optibac for babies and children probiotic. It contains b breve m16v, which has been shown in clinical studies to improve eczema in children.

Are you on a strong enough steroid? My now 8yo was moved up to Elecon at age 4 and it was a game changer. She now has much smaller flares and v shot lives. But we did have to do ‘Weekejd treatment’ for about a year to get on top of it.

i feel your pain - my children both have food allergies too (Ana reactions) but eczema is by far the hardest bit to manage and people don’t understand how all consuming it is.

the balance between food introductions/OIT therapies and how much eczema you tolerate is difficult too…

Also second this. My husband did a year long
intense course of methotrexate and it kept his skin in good condition for about a decade after. He’s now trying light therapy but he had so much relief for a long time. (Be warned that it can cause birth defects - in men via sperm as well as via the woman carrying, nobody thought to tell my husband until I was already 34 weeks pregnant, so that was a scary time…)