To hate eczema with every fibre of my being

[YukoandHiro]

Posting here in the hope that at least someone knows what it's like.
Arghhh my daughter's eczema is driving me mad. We have a very good dermatology department and allergist and an okish gp but as often happens it's all flared up and not responding again.
I hate summer and suncreams. I hate the fact that there so much paraffin grease all over our house it could go up like a bonfire. I hate that my daughter's hair is all greasy all the time.
I hate the constant checking and trying to fight fires. I hate the rituals of it all, and paying for any spontenaity. I hate that my dd will have to think like this to stay well as she gets older.
Latest is hands and write that immediately flare unless we're on permanent hydrocortisone (even dropping down to 3 days a week doesn't work) and huge patches on back and side that aren't itchy, don't respond to steroids and don't seem to respond to fungal cream either.
Aeregghh. I really hope it gets better. We're planning a second as dd 22 months but not sure I could handle all this over again

X-post with a lot of people. With dd4 we find eumovate and protopic more effective than hydrocortisone.

Don't know how much testing you've had done (probably a lot!) but my eczema is caused by allergic reactions, so when I manage to find what's causing the problem and eliminate it, the eczema clears up. Not always easy to find the culprit though. Can be something I ate, or something I put on skin (shower gel/lotion etc). Good luck.

My daughter had horrific eczema, to The point she was almost hospitalised around 2 years old, had dermatologist involvement, allergy testing, dietary restrictions, daily hydrocortisone, every other cream you can imagine 6 million times a day, weeping infected scans and sores, nails falling off... she's now 6 and it's GONE. She very very occasionally gets a little patch here and there and still has some sensitivity to certain things but it's gone. So don't despair, it may not always be like this.

@DrDentyst We couldn't get a referral when she was awful at 6 months, and due to family history (my husband) we went private to the head of the clinic at the nhs hospital we wanted to be in at and she referred us straight in. Best £180 I've ever spent. She put us straight through for allergy testing too as we knew that was an issue and thank god as her egg allergy is severe.
I know it's hard to find that kind of money but if you can afford it I would totally recommend doing it

As another poster above said, look into Dr Aron. He has an fb page. Its not a miracle cure, but a management system. It will have you up the steroid stength, but diluted with anti biotic. You then very very slowly taper the use of the creams. It saved our sanity. My son had severe eczema and allergies. Life was abysmal. Do look into it. It may not suit you, but it could be an option.

@galaxy101 That's amazing! I'm so pleased for you. Really hope the same happens for us.

I think I'm feeling doubly bad today as actually with our regime of "weekend treatment" with hydrocortisone she'd been in a really good place until recently and it all seems to have slipped back again.

@annikin yes she has cmpa and egg allergy and some other sensitivities we're still trying to work out. It's fairly exhausting

My sister's life long hideous eczema has been more or less cured by Dr Aron too. She's ecstatic with the results, she's in her mid-40s and her skin is better than I've ever known it.

I've heard about Dr Aaron but things under "regular" dermatologist treatment had been going relatively well until recently so didn't think we'd need it - but I'll do some research and bear it in mind

The thing that made the biggest difference for my daughter was switching to using liquid soap flakes / ecoball to wash everyone's clothes/towels/sheets takes a month or so to see a difference, but it has helped massively. We now take our own bedding for her whenever we go away. In hot weather, steriod cream rather than ointment may be better, and moisturiser such as Cetraben may be more comfortable, as heavy greasy moisturisers trap in the heat. Also, please be careful with Dermol 500. Easy to create a build-up in the skin that can cause an allergic reaction (red and sore like sunburn, then turns into a brown scaly patch GPs often think it is another eczema infection...). Dairy is also a common trigger. And if you are using steriods, carry on using them for three weeks after it looks like the skin has cleared, to ensure the layers below the surface are also repaired. Good luck -- it can be such a miserable condition.

Ask your GP about Adex gel.

The Adex Gel is an anti-inflammatory and emollient cream that has been formulated to help treat dry skin conditions such as Dermatitis, Eczema or Psoriasis. The highly moisturising emollient not only moisturises the skin, but it also reduces any inflammation and redness. Adex contains the same base formulation as Doublebase Gel with the added benefit of reducing inflammtion and itch.

Worked wonders on my DC may be worth a try

I have no advice, sorry, but I hear what you're saying - my eldest has eczema and has needed the hydrocortisone and betamethasone creams on top of the hydromol cream and then the really thick ointment for overnight that's so thick you almost need a butter knife to spread it on with. Thankfully it seems to be improving with age though.

I hated it when well-meaning people said, "Have you tried e45?" or other over the counter stuff that did bugger all.

Fingers crossed for you and your dd that the recommendations above work 🤞

Have you tried looking at her diet? And not all sensitivities are picked up with allergy tests. The only way to know is trial and error. When did the eczema start? My sister dd had it as a baby. My sister breastfed and realised the foods she ate effected the flare ups. And now her dd is allergic to some foods so they avoid. She also has an epipen as some allergies are severe and some are intolerances that just cause eczema. My dd used to flare up in summer and I realised it was citrus. During summers she would eat clementines have oranges etc. She can have it once or twice a week. But daily will cause flare ups.

I've also had eczema my whole life (now late 30s). I have good days and bad days. I currently have a flare up on my hands which turned weeping, itchy and painful so I had to use steroid cream for a few days in combination with Cetraben. It seems to have cleared up but I'm worried it will flare up again. Then we get into the itch / scratch / steroid cream cycle which I wanted to avoid.

OP can you arrange for your toddler to get patch tested? I used hydrocortisone cream for 10 years before a patch test confirmed I was actually allergic to it!

I also had light therapy in my 20s when my eczema was really bad. For those that don't know it's like a stand up tanning booth. I'm actually worried that increased my risk of getting skin cancer but I was so desperate at the time. Most of my body was red and raw, bleeding. Taking a shower was painful because of the open wounds.

I've actually managed to control my eczema in recent years but it has flared up after having a baby.

I struggled with eczema as a teenager. There were times my legs looked like I'd suffered third degree burns, it was awful.
I hit 20 and my skin has all but cleared up, the doctors were amazed I had no scarring. So please don't give up hope, our skin can/does change.
To ease some of the itching my mum used to cut the end of a pair of tights off, fill it with porridge oats, tie the end together so nothing came out and stuck it in the bath with me. The oats eased what can only be described as the hellfire burning sensation eczema can cause. I know it's only a temporary reprieve but it did used to help. If you use tights the oats soften and a milky sort of liquid seeps out, ended up looking like I'd bathed in skimmed milk, but it was worth it. Hope that helps, I know how awful eczema can be.

Oh oat baths! Think they might be the most soothing thing in existence!

Would definitely definitely second that recommendation

I feel for you OP and everyone else who has eczema or has a child / loved one with it. Mine has been horrendous at times and cost me my career. I was in hospital with it and missed my own leaving do. Thankfully it's more under control these days apart from my hands which have been hideous since the end of January. I've had numerous steroid and antibiotics and it gets better for a bit but then comes back as bad as ever.

I remember my sister really suffering as a child it was awful, I'm so, so thankful that my DD doesn't seem to have it. Fingers crossed.

During my worst break our I went through a phase of scratching so much my arms were torn to pieces and I would hold ice cubes on the affected areas. That moment of sweet relief paired with the horror of what you've done...
I've also used gaffer tape and ovenmits before, used to sleep in skin tight pedal pushers and skin tops to prevent me from getting myself in my sleep...quite often woke up naked as a result.

I also get pompholyx which is like eczema on the palms of your hands and soles of your feet. For me it especially affects around the nails and I've lost my finger nails as a result (they're back now). It's tint little, beyond itchy blisters. I would drag my hands on the door mat to relief the itch.

I've tried everything but nothing helps. It just is my life now.

Ooooh the itch is indescribable, been scratching all day, I use elocon and wash off after 2hrs, probably better if wear overnight but it's greasy, however in that time there's a massive difference, I also use epaderm ointment at night and put cotton gloves on and use the epaderm cream and dermol thru the day, shower using aveeno. I'm allergic to a chemical used in most things so I use paraben and sis free shampoo, make up, and ecover products, not a miracle cure but keeps at bay compared to how it was. I have it on my hands and as well as the itch it's so painful, it weeps, bleeds, and my water is corroded which makes it even worse, enstilar foam is also good but I prefer the elocon.

every child (person) with eczema is different - different allergies, different things that help - but for many dc with eczema they do grow out of it or it becomes milder - not all, but many do - so with luck, maybe you dc will turn the corner - don't assume that your next dc will have eczema, only 1 of mine did & boy was it a nightmare (not that I had much chance of that because you need to sleep to have nightmares!) the worst is when dc got chicken pox because dc was allergic to the medication for itching -argh!

Oh one thing I used is long cotton socks to put on dc hands to stop dc scratching = I was told to do double rinse for washing to make sure all detergent was out & we used goat milk as dc was sensitive to soya & cow milk (& oranges & tomatoes & bananas &coconut & beans & chocolate & chicken & fish & beef & nuts & eggs & three pages later)thank goodness gradually over time dc started to grow out of most of their sensitivities :)

Dr Aaron.

We are an excema house. I wash bedding, towels and clothes on a sixty degree wash and iron everything. It flattens the fibers.

We also took out the carpets and put down laminate, floors are hoovered and mopped every day.

Weirdly, our perhaps not, we only seem to flare up if there is a bug going around but none of us seem to ever get colds. Or stomach upsets for that matter.

I hate eczema too. I had it so badly as a child and teenager, till I was about 17. It was so horrific I had scratched my eyebrows off by around age 16. What can I say, I was bullied horribly for it (naturally) but the worst was the itching, and growing up feeling diseased and disgusting. Thinking about it all now is making me feel sick, so can't put it in words properly so not going to try.

What worked eventually for me was Chinese herbal medicine. It really worked, almost within a week my skin started to look 'whole' instead of in shredded pieces. Not sure if you believe in alternative medicine(?) but it really worked. My eczema came back for a short while in my early 20s (due to depression) but I did another course and it went away again. I believe if I'd taken the herbs as a child it wouldn't even have come back again.

Perhaps it's something you could look into for your child? You have to brew these herbs into a tea (which doesn't taste as bad as they say) and go on a special diet. It can be a bit inconvenient, but then again so is eczema!

Is getting her to the beach a possibility? (I’m in Oz so don’t know how feasible that is with UK weather). DH had it severely has a child and nothing worked until he started spending entire summers at the beach in the water. Both DS’s have it mildly (only one requires hydrocortisone) but they both get a lot of relief from being in the salt water. Not a cure but may offer some relief.