5yo DS eczema - can't get out of terrible flare up.

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My DS's eczema is currently awful and has been bad since the start of summer. I'm struggling so much with the stress of creaming him multiple times a day, as he completely hates it. We have been to the doctors many times and had:

Oilatum
Epimax
Hydrocortisone
Eumovate
Zeroderm

The epimax he seemed to have a reaction to - he went from having eczema on arms and legs to all over his body at that point. AHH!! We just cannot get through this flare. He screamed when we tried Lush dream cream, which I know some people have great results with. We currently do coconut oil, as it's one of the only things he can stand, plus MooGoo. Before the flare, MooGoo was always the go to cream. We have a weekend regime of Eumovate on the weekend as prescribed by doctors.

Got a doctor's appointment on Wednesday. Going to push AGAIN for dermatology referral and not take no for an answer. I also think I'll raise antibiotics as he has a lot of scabby bits from scratching - could an infection be why we can't clear the flare?

Anyone got any ideas what to ask for/raise? So desperate for him - his skin is making him miserable.

Are you anywhere near London? Could you afford a private appointment, even just an initial consultation? If so I would 100% recommend you book an appointment with Dr Helen Cox in Harley Street. She helped us get on top of DS severe eczema when everything else has failed and GPs were completely useless.
She prescribed a complicated but ultimately successful regime of creams and emollients, we only needed a couple of appointments. He is 16 now but those years of struggling with his eczema were awful.
I will say that Protopic made a hug difference, it’s a non steroid cream. But was used in conjunction with other emollients and steroid creams.

https://www.childrensallergyclinic.com/

@switchoffplease thanks - we are in the Midlands, but I would be willing to travel if we don't see improvements soon. I will ask about protopic as I've seen that mentioned by previous sufferers. All the crying is heartbreaking, I feel so awful for him!

We had to zap it with Betnovate to get it under control (on body) then daily application of Epaderm ointment and body suit in all of body to stop scratching. Only used Epaderm cream in the shower.

it improved. He’s now a teen and though gets flare ups from time to time, his skin is ok.

I really do sympathise, I remember it so well. We used to take it in turns at night to lie next to DS and try and stop him scratching, he would wake up with his sheets covered in blood 😢 Unfortunately our experience was that he just wasn’t a priority, and this was 12 years ago before the NHS had got into such an awful state.
If you can manage a trip or two to London then I would say it would definitely be worth it. Or try and find a private dermatologist closer to where you live, hopefully you will find some answers.

Protopic was horrid for me. Sounds like you need a stronger steroid to treat the flare. Then look at causes. I’m allergic to MI. It’s a common allergen and is in shower gels. Liquid washing detergent and softeners. Washing up liquid and shampoo too. Don’t bathe too often. Wash with an eczema specific cream.

@Wolfiefan how do you find out what you are allergic to? Is it through an allergy test or process of elimination?

@Claymoreiron with steroid use, I'm now starting to get a bit confused as his eczema is all over his body. But surely a steroid can't be applied over such a wide area?

Take medical advice on the strong steroid. Guy we saw said to zap it and get under control then prevention stuff. My sons was patch but severe.

Dr Helen Cox did allergy tests, not pleasant for DS but we discovered he had allergies to pollen, and cat and dog fur/dander

@switchoffplease can I ask about how much did the appointments come to cost wise?

I had patch testing. But TBH so many people are apparently allergic to that one ingredient it’s worth cutting it out anyway.

Protopic was amazing for me. You have to use it solidly for about 3 months with nothing happening and the cream is really greasy and then suddenly it all works and then excema was gone.I just use it for top ups now. I have had excema all my life and couldn't believe no one had offered it to me earlier.

@Wolfiefan one of the reasons the GP refused to do an allergy test is because it's atopic, family history eczema. He said it's just the way DS, not relating to an allergy. Is this BS?

Epaderm junior ointment has worked wonders for my son.
The cream had no impact but the ointment seems to be so much better

I’m not sure what that means exactly. I have eczema and asthma. My eczema is now so bad I’m on immunosuppressants. If they can’t get it under control (and GPs are often dreadful at dealing with eczema) then you need a dermatologist.
Oral steroids can be a short term answer to a bad flare.

Another one coming on to say protopic! We now don’t use steroids for my daughter at all, as protopic is working so well.

We’ve also gone against advice of a cool bath everyday - bathing less often has definitely helped a lot.

Otherwise we just use Epaderm cream day to day.

An allergy test will show ige mediated allergies. Eczema is often a non-ige mediated allergic response. These won't show up with tests apart from elimination.

Elimination diet is worth a trial. My son had raw bleeding eczema for over a year. We tried all the creams and steroids. Nothing helped. 10 days after removing egg from his diet it had all disappeared.

Oh and my LO has food allergies, but has been tested for everything environmental and no allergies there.

So the eczema is just eczema - there’s not always a ‘if you cut this out it’ll go’ solution.

When my dd gets really bad flare ups (red raw) I find the following gets get sorted within a couple of weeks

Hydromol in bath
Hyrdocortisone on really bad areas followed by epimac or diprobase 15 minutes later twice a day

I also give her a dose of antihistamine daily when bad and it clears up

It was several years ago so I am sure costs will have gone up, if you click on the link I posted above it should show prices

@Mushroo this is part of my anguish - I really want a magic bullet. I want something that'll make it all better but we've got a family history of eczema for a good few generations so worry this is "it". Wondering if I should do an elimination diet or not even begin going there yet

Are you in a hard water area? If so, I'd highly recommend getting a water softener. When my DCs were little, I knew that the water softener had stopped working by the state of their skin.

My son had really awful eczema as a baby (large areas, very itchy, not sleeping and bleeding from scratching).
Here’s what got it under control: Eumovate on all areas twice a day for 5 days, once a day for 5 days and then twice a week maintenance once it had all calmed down- this is what broke the awful scratching cycle. Dermol 600 bath ointment in every bath (this has antiseptic properties which helped the scabbed bits to heal). Zero base cream every nappy change, and zero derma thick ointment morning and night.
We don’t do half as much now, but this routine got it under control. We got told do this by a doctor we paid privately to see (GP was useless!!).

This has been absolutely life changing for my family.

https://zoebeebeauty.co.uk/products/charcoal-oat-cream?srsltid=AfmBOop8_51t3q6mCHIGD6JcLxfs35AWFxMNiQae--iO8nuIJhz6t3_e

Surecare laundry detergent is the only one we use - any other branded non bio made her worse. Salcura junior bioskin rescue cream helps control her flares with hydrocortisone when she needs it. No bubble bath. I hope you find something that works for you, the above was enough to not need allergy testing or elimination diet for us but I’d go done that route if we needed to