Eczema - Advice and support please!!

[MaisyMoo123]

Hello - I don't post much on here but I am well and truly at the end of my tether with ds's eczema and could really do with some advice and support.

Ds is 6 and has been suffering with moderate to severe eczema since he was about two and a half. It has been getting progressively worse over the past year and we're now at the point where it is really quite bad. He gets the eczema rash all over his body, complete with pussy spots and has sore patches pretty much everywhere but especially in the classic spots behind knees, insides of elbows and neck. He's never really had it on his face before but now has it on cheeks and eyelids. He looks a very sorry state and I just feel so incredibly sad for him. He should be running about care-free but instead he's constantly itching, crying from stinging skin and just really run down.

We moisturise at least 4 times a day - at the moment we use epaderm ointment morning and night and emollin spray through the day plus the usual bath emollients etc. We have regularly used betnovate too but recently switched to protopic - however this caused his skin to really sting and he was in severe discomfort so I haven't used that for a few days. His skin is no better or worse for it.

It feels like we've tried everything. Every cream, every remedy - everything! It just seems that no matter what we do, what cream we use and how often we apply it - nothing really makes any difference. We are never eczema free but we can't even seem to get to the point where it is even vaguely under control. We do everything we're advised to do - 100% cotton clothes wherever possible, non-bio washing powder, he's had allergy tests but still we battle on to no avail. It's heartbreaking.

I'd be really grateful if anyone has any experience or advice they can share on this. It all feels a bit hopeless at the moment.

Thanks for reading!

Not much advice, I'm afraid, but great sympathy. DD is 9 and still has flare-ups. It's horrible on the eyelids. :(

We use epaderm, too. It seems to be the only thing that keeps it under some sort of control, together with a bit of hydrocortisone cream. Have you tried porridge oats in the bath?

Teaching him not to scratch is also very important - if you can manage it! I think that has helped with dd enormously. She still scratches sometimes but resists the urge when she can, as she recognises that it makes it worse.

Not much you can do about them scratching in their sleep, though!

Are you under a dermatologist?

My DC is only a baby but has severe eczema. We found silk undersuits (on prescription) to really help. I put the emollient (hydromol) on quite thick, then the suit then pjs. The silk is very smooth and light, can be worn in the day too and they go up to adult sizes.

Do you give Piriton to help with itching?

It's really difficult dealing with eczema, my son has had it from birth practically. Luckily it seems to be improving now. We have tried loads of things but a few things have worked very well for us. Firstly keeping fingernails short and clean, at least then it's harder to scratch and no dirt going into open skin.

Secondly I looked at diet, if you can eating avocados and oily fish seemed to really help my son. If you can attribute the eczema to anything in particular diet or environment wise make changes and see if it helps, this worked ok with us. We changed sun cream a few times. Lastly in the bath I put oats in a handkerchief and tied it up with rubber band tight. My son enjoyed washing with the and really seemed to help.

Dd has eczema. I've been through countless creams. nothing from.drs worked. nothing.

what worked for us was using paraban and silicone and SLS free products (although steroid cream to help clear up should be used as prescribed)

I'd look at diet too. has he been allergy tested? I'd start a diary to see if it's better or worse after certain foods.
going dairy free helped us

Thanks for the speedy responses! It's at least good to know I'm not alone - it certainly feels like it sometimes!

We are under a dermatologist, but only once seen her once. We see the community nurses now. They're very nice but I'm not sure what else they can realistically do for him although they do really want to help.

Funnily enough NewDirection he has just been accepted on to a trial for the silk clothing - I'm not quite sure how it's going to work but we go to see the nurse this week. It's just another thing to try.

We have used oats in the bath for periods of time in the past. It did seem to help a bit at one point but then didn't seem to have any effect.

We kept a food diary for 6 weeks with no clear indications of anything having a significant impact. He's also been allergy tested and isn't allergic to any grass, eggs, dust mites or pollen. They didn't test for dairy as paediatrician said that as his eczema didn't start until he was over 2 it's unlikely to be that. I'm wondering about trying him dairy free though just in case she was wrong.

The itching is the worst. I just hate seeing him writhing around and scratching himself raw. We try to stop him as much as we can but it's so difficult. We keep his nails short and clean but he still does himself damage with them! He has piriton at bedtime most days and we also use a non-drowsy version during the day when we need to.

Gileswithachainsaw - what paraban/sls free creams do you use?

www.naturisimo.com/products.cfm?id=1971&nme=a%27kin&cat=bath+and+body

www.naturisimo.com/products.cfm?id=1972&nme=a%27kin&cat=bath+and+body

these are fab. There are other places that sell them so just Google. They do a whole range of stuff.

www.mypure.co.uk/organic-natural-hair-care-m2/yes-to-carrots-nourishing-shampoo

I use this shampoo and conditioner too.

I get everything for dd from this site including sunscreen.

Thanks so much Giles - I'll have a look. It's a bit of a minefield once you move away from the prescription moisturisers - and we've tried them all - so good to have a recommendation or at least somewhere to start.

It does definitely require the steroid creams to help clear up. But these products have been amazing for my dd. not a cure but lots better.

obviously other important factors such as regulating her temp so taking jumpers off or jammies if she's too hot.

allowing her a cool shower on hot sunny days if she needs it.

but the cream. runs in beautifully. often the greasy thick ones from. drs sat on the skin and made her itch underneath. It's trial and error obviously but anything that makes it even a little bit better is worth the money.

I always do an extra rinse on the washing if she's flaring up. She has a fan in her room too. not overheating is important.

I'm realistic and don't expect to find a miracle cure (we can but hope though hey!) - I just dream of being at the point where it feels like we have it under control and ds is at least comfortable most of the time. We have been there in the past but it's been a while now and the things that usually get us back on track don't seem to be as effective.

Steroid creams do seem to help but definitely don't clear it up as quickly as they used to. We seem to have to battle with the Drs for them too - they are very reluctant to keep prescribing them which frequently ends up in us running out and his skin going 'cold turkey' which probably doesn't help matters.

Overheating definitely doesn't help. We have problems getting ds to wear short sleeves and/or shorts in warmer weather as he's so self-conscious about it which doesn't help either

Feels like we're well and truly stuck.

aw poor thing

doesn't help cotton uniform is so expensive compared to the standard supermarket stuff. and it doesn't exactly appear to come in a more fashionable style either. not that's it's a parade at school but I'm sure you know what I mean.

I know exactly what you mean. He wears 100% cotton underwear, polo shirts and jumpers - we also bought him cotton school trousers but he won't wear them as they are 'different' to everyone else's - and as you say, it's not just the fabric that's different but the cut too. Having said that, his skin is no better after two weeks of wearing completely cotton clothing so who knows.

It was bad enough before but i think the fact that it's affecting his confidence and self-esteem now is making me feel more desperate about it all.

I'd go back and ask to see the dermatologist again. there must be something they can do in the short term to ease it a bit so you can then try some new products to try and keep it under control.

sounds rotten. Dd is nowhere near this bad thank god and I've seen her miserable at what sounds like nothing compared to what you describe.

your poor poor ds.

Some extra ideas OP

• up his water intake massively, if you can
• give him a fish oil supplement daily
• creams can and should be applied up to 12 times a day. I know this sounds insane but in several cases is necessary can can make the difference. Can you talk to his school / teachers and have them make provision for this?

You don't say how often you're bathing him, or what washing powder you use, or of you've addressed cleaning products at home?

And yes, huge sympathy. Skin disorders are utterly miserable

Thanks for the responses and for the sympathy rootypig! Much appreciated!

I'm off to buy fish oil supplements tomorrow. He's had them in multivitamins before but never on their own. I'll also encourage him to drink more water too - he's not to bad at that but could be better.

I admit we could moisturise more. We are really trying though. He's not keen to have his cream on as it always stings whatever we're using so it's always a bit of a battle which makes it all the more difficult even though he knows he needs it. I hate the stress and anxiety it causes both of us too - it's awful.

We try to bath/shower him every day but sometimes fail. We use balneum in bath and epaderm 2 in 1 to wash with. He's always even itchier after bathing though.

I have tried a range of different washing powders including surcare and laundry balls but nothing seems to make much difference so now just stick to one non-bio liquid. I try to wash his bedding on a very hot wash and to give his clothes an extra rinse. Not sure if that helps.

I am going to try and speak to eczema nurse tomorrow - she is due to be calling me back. I'll ask her about seeing dermatologist again. We're investigating paying to see one privately too. We can't go on like this.

Should also have said - school are great and apply cream twice a day when his skin is bad. I feel bad asking them to do it more often although I'm sure they would.

Have you discussed bathing and showering with your GP / dermatologist? The single most effective thing I found is drastically cutting down bathing, though I know that much advice is to keep skin clean with a good bathing regimen - my personal experience is that that does not help. If you're desperate, it may be worth trying the opposite end of things. Sound out the eczema nurse? Especially as it exacerbates his itching. Reduced bathing may also reduce the stinging of the cream. So will increased application - worth the battle for the first few weeks. Is he a deep sleeper? you can also reapply at night once he's been asleep a few hours.

Hot wash and extra rinse will definitely help, I would continue to use surcare whether you think it makes a difference or not, since the cost is comparable to other detergents and it may take a while for the benefit to be felt.

By drastically cutting down I mean to once a week.

Interesting what you say about bathing rootypig. We went through a good few months of only bathing once or twice a week and only upped this on advice of eczema nurse who was so adamant that washing was such an important factor. I'm really not convinced though especially as it makes him so much itchier that I'm sure much of the damage he does to his skin happens in bath or afterwards. I'm like a broken record the number of times I say "please stop scratching" in a day, and bath time is without a doubt the worst time of day.

We used surcare for about 6 months without any clear improvement but I might try again as that was well over a year ago.

When it comes to regular moisturising we have battled with it for months and months already believe me! Sometimes he's ok with it when it's not so raw but at the moment it obviously causes him quite a bit of discomfort so I can understand why he's reluctant. No matter how often we do it it doesn't seem to make any difference at the moment either which really doesn't help with any of our motivation! We always persevere though. We all know how important it is. I've thought about trying to apply cream in his sleep too, but he's not the deepest sleeper and I can't bear the thought of waking him and then him struggling to get back to sleep for itching.

And on cleaning products - I occasionally chuck bleach down the loo but other than that it's 'green' cleaning products with no chemicals.

If bathing would cut the itching, I think that's a really compelling reason to cut it back. I'm no expert, not even close, but what I've learned about skin is that doctors actually really don't know much, and what works for one won't work for another.

I've never had cause to use it myself, but have you come across or read about wet bandaging? this blog seems really helpful.
itchylittleworld.com/2012/03/20/our-eczema-trials-wet-wrap-therapy/

Funnily enough we are waiting for a prescription to come in for wet bandages. For some reason it's taking ages to get hold of them though.

We already use skinnies to sleep in.

He is literally covered from head to toe in a bumpy rash though and I am wondering whether the really this cream (epaderm ointment) is right for him. I've read some things that suggest the pimply spots he gets might be due to blocked pores.

You are so right that Drs are stabbing in the dark when it comes to eczema. What works for one person is hopeless for another and in our experience what works for a while can suddenly stop working and you're back to square one. That's where we're at now - except the longer it goes on for the less new options there are to try.

I remember when ds was a baby/toddler and he was covered and so uncomfortable and weeping,he had been prescribed various things and nothing worked, I done some research and decided to cut out cows milk, cheese, yoghurts etc changed it all to goats products and the difference within 48 hours was remarkable, the dr insisted it wasnt connected im not with that surgery anymore

He is 10 now and drinks cows milk and products and there is no sign he has ever had eczema!