Cannot cope with DD's eczema any more...

[Schulte]

...is there a support group somewhere? A hotline where I can cry down the phone? Or can you lovely people cheer me up a bit?

I suffered terribly and spent a small fortune on products, in the end I went to my gp in tears and was given Elocon, it is a STRONG steroid but it works and in my opinion the benefit outweighed the risks. It is amazing stuff and saved me from a breakdown over my skin.

freefrommum

There certainly is a lot of conflicting advice but only in as much as for eczema there is no one size fits all remedies/treatments to alleviate the symptoms.

There are lots of products that GPs can prescibe and some treatments that you don't need prescriptions for.

I'd be very interested in the supporting evidence that concludes that eczema sufferers carry many more bacteria on their skin than other everyone else. Can you link to the source of this information or let me know where you have come across this information it so I can get access it for myself.

microbial" staphylococcus

This sort of thing, rotten?

Read the section 'What causes infection in eczema'. I don't think there's a link to the study, but it's known.

You have my sympathy, I was born with severe eczema, requiring several hospital admissions, that eventually cleared up following a course of UV light treatment at 17! As everyone has said as the effectiveness of certain treatments varies from person to person I can only say what made me more comfortable. Daily bathing ( I was allergic to Oilatum, try Balnaeum instead - seems to have an almost anaesthetic property), moisturising using Diprobase ointment (very allergic to the cream) and Betnovate ointment (comes in different strengths) used regularly for a short period of time for flare ups.

Re: steroids - I always keep a tube of Betnovate even now and have used LOTS over the years (even on my face!), I am now 32 and my skin is great, not thin or damaged in any way by the steroids. Much better to use a strong steroid for a short period of time to get on top of a flare up then use loads of milder steroid for weeks on end.

Also, sounds to me like your DD may have an infection and need ABs?

Clothes washed in Surcare, no fabric conditioner and tried to avoid citrus fruits and berries as they seemed to trigger. I think the problem with allergy testing in children with eczema is that they tend to be very "allergic", Practically everything I was tested for came back as a trigger.

Just wanted to say chin up really. I know my Mum was at her wits end many, many times over the years trying to cope with an itchy, sore child but my eczema improved steadily and MOST children do grow out of it around 3 or at puberty.

Another one here whose DS has severe eczema....he's just turned one and the eczema on his face has improved loads (so fingers crossed he's growing out of it there) but its still really bad on his body. We find that Diprobase Ointment works way better than the creams....very greasy but well worth it! Along with eumovate when really bad.

On a separate note, what are people doing with their little ones in this glorious sunshine? I find that the heat doesn't help with DS's eczema and he scratches like crazy when hot but I can't put him in shorts and tshirts as he will just scratch constantly until he bleeds and then he'll scratch some more! I have scratchsleeves but really feel like a mean mummy having to cover him up!

Yet another difference, haribo. Dd2 tends to be better in summer as it is central heating which plays havic with her skin. Sorry, can't help.

DS is bad with central heating too pointy!

Poor you - its bad enough having it yourself (I do, mildly) but watching your little one with it is a killer.

My DD has it very very mildly and it only comes on if she eats too much dairy. She's fine with the odd bit of cheese/yog/ice cream but if I give her two dairy yoghurts a day it starts creeping in. Controlled by hydrocortisone though as its only small pink patches on her arms.

Mine is worse and my mother (when I was little) and then I (in adulthood) spent my life trying to avoid steroids if we could. Back in the 70s there was no advice about steroids and tiny babies had strong stuff put on their faces (I have little spider veins on my cheeks now as a result!)

But actually the best advice I had recently was that, very delicate skin areas aside, skin thinning isnt an issue. Its better to use the appropriate strength steroid straight away, for two weeks even if it seems to have gone, to blitz the outbreak and control it, and then manage with moisturiser (I recommend Aveeno which DD and I love - find diprobase/oilatum cloggy and itchy) the rest of the time.

I haven't worked it out but I reckon that at the moment I am on two weeks of steroids and then 6 weeks of just moisturiser before the next flare up.

The steroid I need is mometasone (brand name Elocon) which is a step up from Betnovate, which itself is a step up from hydrocortisone. You can go quite a bit stonger than mometasone. It was interesting to see this when the doctor showed me the relative strengths of steroids - I had assumed betnovate was really strong, actually it is second from the bottom!

I also did a York test and found that I am mildly reactive to yeast and lamb, so avoid these as much as poss. I find if I have a lamb roast my exzema is bad the next day. Does your DD have any intolerances/allergies?

You poor thing. We have been there. It is utterly wretched, I know.

We had years of steroids and antihistamines and lotions and potions and everything else.

Then I cut out dairy for 14 days to see if it would make a difference (against dr advice, but I was so bloody desperate to do something to help my poor little boy)and his eczema disappeared. He has now been dairy free and eczema free for seven months. Might be worth a try. My understanding is that dairy takes 14 days to leave the body so a 14 day trial is all that you need to do. At 2 years old there is no danger in cutting out dairy for a fortnight as long as she eats a healthy diet.

I have tried cutting down on dairy but she goes to nursery so to cut it out completely, it's a bit more hassle as they can't change her diet from one day to the other. Would cutting down make a difference at all if she did have a problem with dairy?

It sounds like the eczema is a bit of a hassle anyway. Why not swap it for a different bit of a hassle for 14 days and see if it helps? :)

Pointydog

Thanks so much for that link.

This explains a lot and sadly I fear it is therefore time for our family to change GP practice as it seems that our GPs cannot interpret symptoms being presented to them in respect of eczema flare ups given the information in that link. It also seems we are not being prescribed anything new, same old same old for the past umpteen years despite review appointments.

my sympathies for DD's eczema, it can be utter misery. Re navigating the NHS for referrals, have you spoken to the Eczema Society Helpline ? Hopefuly they can give you some pointers - and some moral support.

Schulte, I'm no expert, but I would think you'd have to cut it out completely to see if that's part of the problem or not. If you don't, then you can't say for sure. The whole thing with eczema is a long process of trial and error, of elimination (topical creams and other potential allergens like food), to get to the triggers. It is a hassle i'm afraid.

Dd1 is allergic to dairy, and had awful eczema up until she went onto hypo formula from breastmilk, so she was reacting to the tiny traces of dairy in my bm. She is very allergic though!

I'm glad it was of interest to you, rotten. Try to get a dermatology referral. One visit to the dermatology nurses alone will probably be of immense use.

Just one other small point to the vast array of advice you've been given.... Please make sure that if you use any natural moisturisers / oils, that you don't use any that include nut oils. I've two friends whose kids are anaphalactic to nuts and while there is as yet no confirmed link to why more kids are getting nut allergies, they have both been told by medics that one current theory about why these kind of allergies develop is because parents have used oils / moisturisers containing nut oil on their children's eczema.

Do you know, among the first raft of things the dermatologist precribed for dd2 when she was a few months old, was peanut oil which had to rubbed into her head every evening. Not sure if that's still done. I'd doubt it.

Hi, my son has terrible eczema too however I have managed to get his under control by only using aqueous cream (a soap subsitute) in the bath (just a small handfull) and using no other soaps/lotions on him at all. I find that his gets worse in the summer due to sunscreen and swimming (the pool chemicals) but I use a steriod cream on him when he gets a flare up. I also suffer from ezcema and mine is also related to what I put on my skin rather than what I eat, and over years I have found out what soaps and showergels etc I cannot use. I also cannot tolerate clothes softener or strong washing powders ( I used to just use Ecover) Perhaps you could try cutting out your use of bath cleaners too, as my son cannot tolerate the chemical residue!! Just clean with something natural,... I used white wine vinegar for a long while!!! Good luck, and dont give up!!

I haven't heard that about the bacteria on the skin either, although it could well be true in that broken/damaged skin probably does hold more bacteria than healthy. I was told by my dermatologist that ezcema is a genetic problem in that there is a fautly gene involved which causes skin to lose its moisture too easily, become dry and then become inflamed and sore. The trick is to keep your skin as moisturized as possibly.... the problem of course is finding the moisturizing/emolient that doesnt cause a flare up of its own!!! I have found that something like vaseline works well because it is thick and keeps on the skin for longer. Anything scented and 'pretty' is just off limits for me unfortunately!!

Ds hasn't got eczema but has always scratched his face in bed - wouldn't keep scratch mitts on, worked out how to put socks of his hands, grew out of the babygrows with attached mitts. I found this website and he is now scratch free - worth a try for night-time scratching maybe?
www.scratchsleeves.co.uk/index.html

I agree, scratch sleeves are great and really do the trick. Luckily they are fairly thin so hopefully don't make them too warm in this weather. Not sure how older children get on with them but my 11 month ds has been fine with them for the last few weeks

Rottentiming more info about bacteria and skin infection in eczema sufferers: www.newcastle-hospitals.org.uk/services/dermatology_treatment-and-medication_skin-infections-in-atopic-eczema.aspx
I'd thought that it was a widely known fact but clearly not! I would suggest rather than changing your GP, simply demand a referral to a dermatologist. They're called GENERAL practioners for a reason, ie they are not specialists and you are perfectly entitled to a referral. I don't want to sound as though I'm being really critical of GPs, I'm simply saying that it is not within their remit to be a specialist in every ailment.

Ooh, thanks for the link to the eczema helpline, that's excellent. I know about the theory re. nut oils, but I also know there's a lot of controversy around it. And I have a nut allergy myself. I dare say if dd goes on to develop a nut allergy it's probably not because of something I have put on her skin though, but because she's an atopic child and nuts are nasty little allergenic things.

I don't really have anything useful to add! Just feeling frustrated and sad about my son's eczema - seems to be getting worse, he's now regularly waking at night and scratching away. I'm sure there are lots of kids out there who have it much worse, so I'm grateful it's only localised - but aaarghh!! I just want to make him feel better!
I've tried oilatum, e45, eucerin, aqueous - I'm now on aveeno and steriod on and off - still not any better. Just got no faith in gp's.
Me and hubby considering going private - what do you think? Waste of money??