Ezcema-any one had any luck going paraffin free!?

[eczemamummy]

I'm just wondering if anyone has had any luck going paraffin free in treating their child's eczema? We're currently using hydromol and steroid cream on and off and my DS is itchy no matter what-even when on steroids and the redness and soreness is gone! Allerief twice daily hasn't helped, and he's been on a non cows milk milk for two months and it's still not improved although it is at its worse when not using steroids/withdrawing from steroids. No pets at home or signs of dust mite allergy etc.

The hydromol REALLY helped for a couple of days but the effect quickly seemed to wear off. His skin is soft as anything so it's not a dryness problem. His skin is even soft first thing when no hydromol for 14 hours.

His skin flares if we go from the cold in to a warm house (or just 16 degrees!) for example, and is most red first thing.

We have an appt with a dermatologist tomorrow thank goodness but I've been looking at happy skin clothes and wondered if anyone has had any luck with those and/or going paraffin free as their website advises!?

Please help! I've spent most of my morning pinning him down and just want to cry! X

Just realised I've spelt bloody eczema wrong in the title!!! X

We bought some of the happy skin stuff and have had her socks without her AproDerm on and noticed a difference but there was not way we could not put her creams on with the tops and trousers that we also bought as she would rip her skin off.

Hopefully the appointment with Derm goes well. How old is your son? What steroid is he on?

Sometimes breaking the itch scratch cycle is a nightmare. And often their skin can look clear but the inflammation is still there underneath which causes the itching to continue, and then flare ups to reoccur.

@Monstermoomin thank you. He's almost 8 months. That's interesting about the inflammation still being there in spite of no redness.

We're on eumovate at the mo and very careful to wean him off. Hydrocortisone worked perfectly initially but then the GPs incorrectly advised us not to wean off which led to the worst flare ever. It was ten times as bad as before we've started! So ended up on eumovate, but will ask dermo tomo if they think he'd be better with hydrocortisone.

It's so hard with it being cold that they can't have any clothes free time! And can't even walk the central heating up as that sets him off too! X

@Monstermoomin so can the itching CAUSE a flare in itself? Xx

Yeah scratching the skin can cause it to flare. It's so hard when they're so young as they don't understand. My daughter started with eczema at 4 weeks old (now 3.5 years) and it's a hard time for them and you as a parent.

I think it was either the dermatology consultant or specialist nurses who gave me some education around the inflammation of the skin, as they were talking about how steroids are often stopped because the flare up is gone, and to continue for a few days or do like weekend therapy.

How often are you putting the hydromol on as it can feel never ending but the more you do it the more it'll help the skin.

Steroids are a difficult one as well, because your skin can become used to them which causes need for stronger ones, or sometimes parents are afraid to use enough so it doesn't seem like it's working (again just what Derm consultant told me). And you can get steroid withdrawal which causes flare ups.

Have you identified any triggers? We didn't really manage to identify anything specific but did things like have a certain washing powder that's got nothing in it, was on 60° where possible, hypoallergenic bedding, wearing cotton only clothing, not using any scented stuff in the house. But like you say, winter is a nightmare and unfortunately will always cause flare ups, but the emollients regularly being applied as much as possible (although I know my daughter hates it) really is helpful.

Have you tried showering them instead of baths? My DS's skin improved pretty much overnight when I switched. We have very hard water here.

I have had severe eczema since birth. I have managed short periods of steroid free.

Moisture is my biggest concern. We don't make moisture in the amount we need. So even if you have moisturisied you need to add on more. Then a bit more for good measure... Add an extra dollop

@Monstermoomin thank you. We're obsessive with the hydromol! Six times a day, even in the middle of the night. We use surecare and don't wear any perfume etc! He wears cotton vests. The only thing I've not tried is doing an extra rinse on his clothes. No specific triggers other than layers/central heating and I'd say his skin is maybe 30% better since starting the new milk! His poos are normal since too-they were previously very loose.

I have lots of questions for the dermatologist tomorrow! Especially about steroid use etc! I think we're using enough on him but Im worried we're stuck in an unhelpful trap of steroids even though we're very careful to wean off x

@megletthesecond no not tried showering. We do baths every other day having previously done them once/twice a week and his skin is better since bathing every other day. We use oilatum.

@BryanAdamsLeftAnkle thank you. His skin is soooo soft so I deffo think we're moisturising enough-we do it every two hours in the day xx

That's good, speak to them about other options too depending on what's available in your area.

We moved onto a topical immunosuppressant when she was about 6-12 months although it's off licence due to her age. However we've not managed to wean her down from this and we're waiting to go back to Derm (having moved area) because it just doesn't seem to be improving and she's on potent steroids to reduce the flare and the strongest topical immunosuppressant and I'd have thought after 2.5 years we'd have seen an improvement 🤷

Also with weaning, if you do any BLW then try to apply hydromol on face and hands as a bit of a barrier before eating food and be prepared for some flares.

My LO reacted to loads of stuff, came out in hives, but the advice of the consultant immunology/allergy specialist was to continue as she wasn't having anaphylactic reactions and I just gave her piriton when it wasn't going down that quickly (we got it prescribed off licence).

Thanks @Monstermoomin. Yes we smoother him in hydromol before eating and mainly try to spoon feed. We've also seen an allergy doctor so we're focused on getting the allergens in him to try and prevent him developing any allergies! That's good to know to keep persisting as long as the reaction is not severe. He seems ok with everything so far. The only thing we're querying at the is oats but we're just going to keep trying every couple of weeks x

I didn't have full on eczema, but a patch I could not get rid of and over about three or four years I tried everything recommended in turn. I then tried coconut oil and after a few weeks it was gone and never came back.

My boy isn’t diagnosed with eczema, but awaiting go appointment due to suspected egg allergy.

It’s a really nasty rash. Completely destroys the skin barrier instantly.

Lanolin is the only thing I can find which has worked wonders.

I can see instant improvement. Apply it multiple times a day. Worth a shot if you have some around.

That's good he's not having many reactions with goods.

Let us know how Dermatology goes tomorrow :)

@eczemamummy how did your dermatology appointment go?

@Monstermoomin ah thanks for thinking of us. So she advised trying a stronger potency steroid for a week to fully fully get on top of the eczema which I don't think we truly have yet, and then weaning down from there! She also recommended trying the skinnies clothing too! She suggested to stick with the hydromol but maybe switch to a lighter cream in the summer xx

I had chronic eczema on my face and arms. Chinese herbal medicine got rid of it. Horrid tea but it works

My DD had awful eczema and we eventually realised her skin reacts to oats, which was unhelpful as almost every cream/remedy seemed to have oats in it! We did hydrocortisone when flaring, then head and shoulders in her bath and cetraben cream to try to prevent flares. Interestingly the thing that jump started her longest period without any flares was going on holiday to a hot country. No idea if it was the heat, the sun, the seawater etc but it seemed to help.

That sounds like a productive appointment and hopefully this steroid gets it under control do you can just maintain it :)

We had skinnies for a bit before using comfifast garments.

Good luck 🤞

Be careful of steroid use. Emovate is strong.

nationaleczema.org/blog/tsw-need-to-know/

Topical Steroid Addiction and Withdrawal is a horrendous side affect to steroid use.

@takealettermsjones that's really interesting as another mum said to me two weeks in the sun sorted her daughter out!!! We're going abroad in may so curious to see what happens then! X

@CaptainMum yes I've done lots of reading and discussed all that with the consultant dermatologist...

With bad eczema always worth having a coeliac test
have had several people with recurrent eczema who have had no gut symptoms but positive coeliac tests and brilliant improvement with gluten free diet - often becoming steroid free

the sun is beneficial - it’s similar to the basis of why dermatology use phototherapy at times