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!

Thanks claimedby. That's interesting. When ds went for allergy testing the paediatrician said it was unlikely to be milk/dairy as the eczema started after he was two. I've just posted a query in allergies to see if anyone has any thoughts on this.

We had huge success with Cetraben cream and lotion - much more so than Epaderm. It improved the skin's texture hugely and is properly absorbed iykwim. Have you given that one a go?

My DD suffers but not nearly as bad as your DS. Just wanted to agree with rooty. If mine bathes more than twice a week or goes swimming too often she flares up. Also too much milk, or chocolate makes her flare up but she is not actually allergic to either. You and DS both need a big hug cos I know how rotten it is when you start to feel you are losing the battle.

Awww! Thanks howabout -you're right, hugs are very much needed here at the moment! Ds is so good about it all and really doesn't make too much fuss considering the discomfort he must be in. I just desperately want to help him feel better.

Thanks rootypig too - no, we've not tried cetraben - must be one of the few we haven't tried in fact! I'll definitely look into that one and speak to the eczema nurse about it. It sounds good that it absorbs well - something that epaderm definitely doesn't. The poor chap is constantly slimey/shiny! We have also found that things seem to work for a bit and then start exacerbating things - think we might've reached this point with the epaderm ointment.

It's interesting that you also find fewer baths help howabout. We were tempted to cut back but he is literally shedding bits of dry skin everywhere so washing feels necessary. This evening we cool showered him instead of bathing and gave him a good wash all over with the epaderm 2 in 1 cream - he seemed much less itchy than he is usually after a bath, so that's something positive. We have also finally got hold of the wet bandages today so he's got those on his worst areas, under his skinnies. Luckily he found the whole ritual of putting the bandages on quite amusing and couldn't wait to show his big sis his 'mummy' look!

Oh, little lamb! yes ask for Cetraben, it's a slightly different beast. And get both types, the thicker cream and thinner lotion. Fingers crossed you turn a corner soon

Thanks for the tip rooty. I will speak to the eczema nurse about the cetraben creams as soon as poss.

We have fingers, toes and everything whose crossable crossed that we turn a corner soon.

Both my DCs (and me!) have eczema. I was always advised to bath or shower the kids infrequently. (Once or twice a week.)
When my kids have bad flare ups I use emollient about every thirty minutes during the day. Honestly finding the right emollient and applying it (it feels like almost constantly) is so important.
Only diprobase works for me. Both my kids use Dermol. It has an element in it that is supposed to kill the itch. Worth a try? (Doctor may not suggest it as it isn't cheap!)

Have you tried AVEENO cream op? The mother of a child at school with bad allergies and eczema all over his body and face recommended AVEENO to us as it had worked wonders with his skin. We are eczema free now too since switching to this cream.
We also use p20 suncream as everything else makes dd's skin flare up.

Cetraben didn't work for my dd. I recommend trying different options until you find the cream that suits your Ds best. We had tried loads and finally found aveeno that worked for us.

Hi - I still have eczema (now 38) after having it badly as a child. As well as all the pp tips above I use Vagisil cream (yep foof cream) when mine gets really bad. 2% lidocaine takes the edge off the itch to break the cycle

My GP's thought was it couldn't do harm as long as it was only occasional .

I have absolutely no idea whether this works or not but it might be worth making contact and finding out a bit more www.nottingham.ac.uk/research/groups/cebd/projects/clothes/index.aspx
Someone involved in the study has posted on our local FB page saying they have a few spaces left.

My 17 month old son has mild eczema and dry skin. I've also had eczema all my life, mostly hand eczema which I have largely under control. One thing I have noticed is that the 'hardness' of water makes a difference to us... we are visiting family at the moment in an area where the water is much softer and I always notice an improvement for both of us! I'm also considering cutting dairy out of DS's diet for a few weeks to see if it improves things, although luckily his eczema is mostly just dry red patches.

Sorry forgot to create the link! www.nottingham.ac.uk/research/groups/cebd/projects/clothes/index.aspx

Hi Goosey - funnily enough ds has just been accepted onto the clothing trial and we're going for our first apt. Tomorrow. As you say, no idea if it'll work or even help a bit but we are at the point where anything is worth a try!

We have tried a lot of creams and combinations of creams over the yrs including aveeno. It seemed to work ok for a bit but then after it caused a nasty red rash on his face we were advised to stop using it. We have tried dermol, diprobase and eucerin too. We haven't yet tried cetraben or the dipeobase gel.

His worst patches seemed a little less raw after the wet bandaging last night which is something.

I just feel so sad for him. He looks so poorly especially as it's so sore round his eyes. It makes him really run down too and all his glands are up. I know there are so many worse things to have to deal with and we tell ourselves this every day but it does feel quite desperate right now.

Thanks for listening and sharing.

I recently spent a 5 nights in hospital due to my eczema. I ended up with a bacterial I fection ( my 3rd this year!) and took strong anti biotics. I also had a bath in a purple liquid each morning ( it's a pp bath, potassium pragmate or something similar) I then sat for an hour covered in 50 50 cream, then it was off for dressings, steriod cream then ichtimol (so?) which is made of fish but does the the trick nicely. After all that cream head to toe in bandages.

At the point I arrived I had eczema on 80 percent of my body. By the time I left it was almost clear. My be worth asking to get dc admitted? The ichtimol cream is amazing if you can get it. You can also get wet bandages with it on

Bandages are called ichthopaste and bath stuff is actually called potassium permangabate.

Grrrr Permanganate

Thanks girlylala. Sorry to hear that you had to endure a hospital stay to get your eczema back on track but it sounds like it did the trick. The eczema nurse we see did say a few weeks ago that she'd admitted a little boy the same age as ds with eczema only a bit worse than his (and his has got worse since then!) and that there had been massive improvements in his skin in just 48 hours. Every since then I have been half thinking that a hospital stay might not be such an awful prospect if it meant we got on top of things. It was so sore at the weekend I nearly took him to a&e! Can you ask to be admitted though?

The wet bandages we have are called viscopaste - not sure if these are any good? I'll ask about ichthopaste too.

Feel for you OP. DD was tormented and it's so hard to watch. We accidentally discovered that pulses were a big factor, so all beans, lentils, etc. that improved it hugely. She doesn't tolerate eggs well. Some people were recommending Salcura on a thread yesterday. I'm thinking of giving it a try. DS developed eczema in his teens. Is a bit seasonal and I suspect tree pollens. Both flare when stressed - exam times! (they are older). Also sewed cotton socks onto pyjama sleeves when they were younger. Good luck. As PP have said, everyone is different. Good luck.

I went to the gp, he took one look at me and said I can't help you anymore, you need to go to hospital and sorted it there and then. I'm in Scotland though don't know if that makes a difference. Have they swapped to see if there is an infection yet? That could be slowing down recovery. I'm not sure of the dufferences between the bandages. Anything that cools it will help though.

Differences

He's not been swabbed and I don't think it's infected - but, he has an eczema rash from head to toe and has scratched himself raw which means he has open sore bits all over, but worse in some places than others. Of course we're worried that infection could set in. He's in such a state, poor chap. I might sound the nurse out about hospital admission - even if it's just to ask what state he would have to be in for it to happen - that's if she every calls me back.

We are trying hard to keep him moisturised. I'm impressed that you manage every 30 mins Wolfiefan. How does that work with school? We are doing our best with it but it's so hard when he's at school/with others after school. People are willing to help but he's not keen to have it applied and I just don't think they push it as much as I do and probably don't do it as thoroughly.
It feels like a constant battle

Open sores are a high risk for infection so that could be a start into getting to the route of it. At the moment I'm being allergy tested to but you need to get the skin under control first. I can't inagine what this must be like for a child. Poor thing.

It sounds like bacteria in the eczema to me, especially the "worse itching in the bath/when it's wet" thing. I've had this on numerous occasions in the past. GPs can't see it but dermatologists seem to diagnose it within about ten seconds of seeing my skin. The U.S. method is apparently to keep the skin bugs under control with a cap of Dettol in the bath twice a week. I'd try that and insist on another appt with the consultant or pay if you have to and have the money. Good luck!

He doesn't have any large open sores - they are more like small patches all over his body - i.e. where he's scratched the tops of his rashy spots and then some places where several of these have joined together.

The Dettol on the bath thing is interesting maltravers - can't help thinking that would sting loads though? It's bad enough with his regular bath additive!

Maltravers - how do they tend to treat bacteria in the eczema in your experience?

Bacteria in eczema is treated with anti biotics