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

My breaking point was the wet wraps. We were advised to wet wrap her and it was traumatic for me and her trying to get her in those clothes. We went private with Dr Aran and bar the occasional flare (this last week) we have had no problems since. She literally looked sunburnt before we started treatment but it's finding what works for her.
Allergies run in my family and we haven't started thinking about another as I've seen both my sisters suffer and my DD, I don't know if I feel I want to take the risk of another suffering the way they do.

I’ve had mild eczema since I was a child and I get mild flare ups, it drives me mad! It seems to be worse in the heat. I really feel for your daughter. The itching drives you insane, then there’s the blessed relief of scratching for a few moments but you know it makes it worse. I had to bandage up my wrists during some flare ups and wearing cotton gloves helped.

I have found that the emollients make it worse during flare ups. Weirdly metanium or talcum powder- drier lotions- seem to soothe it better.

I recall reading somewhere a theory that the break outs are caused by a bacterial infection on the skin- so that would explain how heat/moisture provides a breeding ground for bacteria and irritates the skin. Contrary to the advice I try to keep my skin as cool, clean and dry as possible during flare ups. It’s only a theory but when you have it you’ll try anything.

I’ll be following this thread to see if anyone else has any good tips.

I hate summer for eczema (currently using more HC than I’d like, but without it, DD just flares up again)
And winter for asthma and trying to stay out of hospital

Thanks everyone, I knew there would be people here who got it. I find this time of year really depressing because I don't want to stop her enjoying the outdoors and exploring and to feel the sun and breeze on her skin but I'm always having to think about consequences. And the damn fight to find a decent sunscreen that doesn't undo all the good work might kill me.
I know I'm lucky that so far my dd hasn't been bad enough to require wet wrapping or a hospital stay or anything. But I worry that she's basically been on regular hydrocortisone for a year now (under clear medical guidance FYI).
Also she has cmpa and we are supposed to reintroducing baked milk to her diet as she's passed the hospital challenge feed but while she's flaring I don't what to do it because I can't tell what is a reaction and what isn't. Such a nightmare

I know what it's like. I've had eczema for my whole life (am late 30's). It was very bad as a child and I have areas on my arms and ankles/feet where my skin was that bad that the pigment is damaged. The dr and my parents tried everything available at the time. Numerous creams, bath potions, wheat free diet, allergy testing, "tarry" bandages, mittens to stop me scratching, the lot. What actually worked was organic, SLS and sulphate free shampoo, shower gel, moisturisers etc, being aware of triggers and growing out of it. Sweat triggers mine so in hot weather it can flare up. That also means a lot of the moisturising creams from the dr made it worse as the skin couldn't breathe. It also flares if I'm run down or have a cold etc. Random fact though, I've got one finger where I've never ever had it!

I hope you get something that works for your daughter, it's such an individual condition that it really is trial and error.

It is a nightmare and we went through the mill with DS.

I know steroids are scary but you need a stronger one than hydrocortisone. DS was on 3 strengths up from that. Our GP had had eczema babies and was of the opinion that you have to clear it before you can prevent it. The suffering is extreme and the steroids work. She was right IMO.

FWIW DS is now 9 and doesn't flare like he used to ever, just occasionally gets itchy in hot weather.

My DD had eczema as a baby but suddenly when she was 14 it became out of control, it started on her eyelids and was really awful. THey tried steroids, everything and it wouldn’t go away

I found that eliminating all SLS from every single product she uses and it’s all gone by itself! It’s very expensive but worth it

It might be worth trying to elimate all sulphites?

Yanbu at all. Not even remotely.

I have it and it's so frustrating. The slew of greasy ointments, the constant battle of steriod creams, the pain of flare ups, the having to be ultra careful about any kind of soap/shampoo /laundry detergent/hairspray/ad infinitum. The endless hunt for sunscreen that doesn't make your skin just as sore as sunburn does, limiting of diet to avoid flare ups.

It's wearing.

You have my sympathy, I wouldn't wish it on my worst enemy.

One thing I have found helpful is to only shower every other day and only in warm not hot water. It's crap but better than the alternative.

Thank you IHeartKingThistle that really gives me hope. In fact the dermatologist has sent a prescription for a stronger one to the GP so I'm going in tomorrow to collect it.

Maybe things will improve as the years roll on. My husband still has eczema in his 40s but is far more easily managed than it ever was as a child.

We're dealing with food allergy (and this month quite a bit of outright food refusal too) so it's just all a bit much at the moment

We started using an antiseptic-containing lotion for our youngest and it was a game changer. We'd noticed that when on oral antibiotics for something else the eczema improved so we looked into that. Seems the eczema was low level bacterially infected pretty much all the time. He still has eczema most of the time which flares up with triggers (grass is one at the moment, nightmare) but it's been so much better. You have all my sympathies. w
We're currently using Dermol 500 from boots pharmacy. We don't put sunscreen on him. Long sleeves and light long trousers (we need that anyway to stop him scratching, but also protects from the sun) and a hat. Sunscreen is so bad for his skin that it's just not feasible right now.
Our middle child used to suffer terribly too, but he did grow out of it completely, so hopefully you'll experience the same. Good luck!

It's so rubbish. I remember it so clearly and I feel for you.

Good point @sallyisstarstruck she's teething and has a cold so could be that making things worse

Oh and those silk scratch sleeves are great.

@Adoptthisdogornot Do you use Dermol 500 as a moisturiser? We use it as a soap substitute

Agree with pp with regards to clearing it first. We had a course of antibiotics and antivirals and have been able to manage it with stronger steroids creams since. Only as needed, could have weeks with no steroid cream use, only moisturiser, and then a week of steroid cream. No longer use hydrocortisone only
Emovate or lotriderm.

It does tend to improve with age though.
I'm in my 20s now but used to need wet dressings on my knees and back regularly when I was in primary school but haven't had a huge flare up for years (not since late teens).

I get quite nasty flare ups on my hands still but that's just because my job requires an enormous amount of hand washing.

Betnovate is good stuff too. Don't be too sparing with it. A stronger dose for a shorter period does tend to work better for clearing it I find

Also, didn't see how old your daughter is but if she's little then scratch sleeves at night if you haven't already got them, and I second the advice for a stronger steroid. We use hydrocortisone for face but clobovate (?) on his body.

I've three children only one has real skin problems so you might not get two children with the same issues

Yes, dermol 500 as a moisturiser. Very liberally and everywhere!

My dd1 had horrible eczema as a baby and toddler. It gradually improved and she's a young teenager now. Her skin is still very dry and sensitive and we have to be careful with products but flare ups are very rare these days.
If it's any consolation dd1 has the full package - asthma, eczema, hay fever, food allergies and dd2 has none, not a single one of those.

It's incredibly frustrating. Just as we think we've got dd4 under control it flares up again. We have a 6 month old and her eczema is even worse than dd4s, her skin is all cracked and infected and is on a course of antibiotics. On the plus side our new GP has taken the babies eczema much more seriously than our old one did with dd4 so hopefully we will get a referral to a consultant much earlier (took 2 years with dd4).

Anecdotally with our dd4 we know bacteria is a problem for her and we've found that baths with Epsom salts, bicarbonate of soda and using dermol as a soap helps. Plus a shit load of steroids and changing emollients every few weeks.

I understand the frustration of the creaming ritual. Every single day x 2 a day I have an argument with dd because she's jumping around and just generally being a pita whilst I'm trying to put the creams on so it takes even longer to do.

We're currently looking into hiring a water softening system as our water is very hard to see if that might help.

I've been feeling down about mine today! It's activated by stress and it gets worse with sweat too and I'm running a lot. This flare up started when I stopped breastfeeding my eldest two years ago and I blamed hormones but it hasn't gone away even though I'm feeding her sister thankfully the girls seem to have it mildly in tiny patches so hope they haven't inherited my skin!

Have you tried Pro Topic (tacrolimus)?

I had extremely bad eczema as a child, I had to get wrapped up in bandages as I was just covered in puss spots. It was relentless and I was miserable. My mum tried every lotion/ potion/treatment available at the time. I've no answers for you other than it'll more than likely go with age. I think mine was mostly away in my late teens. I'm mid 30s now and it flares up very occasionally if I'm stressed, sometimes in the winter. My younger sister never ever was bothered by it. It's hard now but hopefully it will ease off with time x