Eczema, nothing works.. dairy?

[maminthemiddle]

My 16 month old has had eczema since they were 5 weeks old, it's quite severe and we've been sent away with steroid after steroid which improved but never resolved it. Every time we stop steroids they return, even when weaning gradually. We cut out dairy when he was tiny and they didn't see enough of an improvement so normal diet resumed. We try and manage it with steroids, ointments, bathing with just water and only twice a week. Nothing ever makes much of a difference.

I feel so bad for him and I snapped at the doctors today and fought for a referral to paediatrics (two have been sent and previously declined - so not holding my breath) but they've advised to cut out dairy again in the mean time and switch back to stronger steroid, they've also put him on twice daily antihistamines.

I'm worried about giving so many different things a go at once, I'm worried his diet isn't varied enough to cope with no dairy (he's a nightmare), I'm worried as I can't get him happily taking an alternative milk, I am at my wits end so god knows how he feels, do I just need to trust the process?

He sleeps amazingly (I'm talking between 2.5-4 hours day time and 12 hours at night) and although itchy is very happy. Which wouldn't really go hand in hand with a 16 month untreated milk allergy, would it?

Dust mites…its huge culprit for eczema

Do you have any pets, or potentially a mice problem?

Laundry detergents, perfumes, lanolin in moisturisers, soap products

Wooly clothes, bleach in nappies, the list on environmental triggers goes on

Yes we have a dog, wouldn't even know how to trial and see if that's the cause? How are you ever meant to get to bottom of it with so many possibilities 😭

My DD had eczema from starting weaning til age 5/6. I've just tried to find an article to cite which we read saying something like 80% of children this age, it's triggered or made worse by dairy. When we cut that out it improved but didn't completely go, but still a relief.

Also read that similar number of children grow out of it around age 5 ish. So we treated symptoms with tonnes of oat based creams and rode it out. Then around that age saw NHS dermatology, followed their steroid ointment protocol and it cleared up. Now 15, she has the tiniest bit of red dry skin around one eye and that clears when she drinks enough water and has regular good oil eg omega capsules. Being a teen, she goes all day on one glass of water at school but that's on her now.

However DD has rhinitis too and that's ongoing. Dr said, some people just do. DD was only ever free of it all when we went on holiday to Spain when she was 4 and 5 - hot dry air and in the sea every day.

But worth trying diary free - and it has to be 3-6 months before seeing a difference.

I feel for you, it's horrid.

Depending on how things are organised in your area I'm not sure a (generic) paediatric appointment is going to help much - would dermatology or eczema specialist nursing be better?

Just wanted to check, is one of the steroids you’ve already tried Mometasone? That worked for my son after several others didn’t work.

My DS has had eczema since a baby, the only steroid cream which helps is clobetasone, he is 28 now, still has occasional flare ups, but is still on the same cream, despite having to ask for it all the time, as GP won’t put it on repeat and only gets a small tube. They say steroid cream thins the skin, but DS’s skin is absolutely fine.

I asked for a referral to a dermatologist and an allergist and they referred to paeds. It's incredibly frustrating. I'm assuming peads will refer us on if they deem it necessary but they never seem to.

Im struggling with what to do, do I cut out dairy, move up to the stronger steroid and start giving him antihistamines twice a day daily? It just feels like a lot to change at once. I fight for medical advice and then get it and question it, so maybe I just need to trust the process, but I feel so uneasy.

Ds had food allergies as an infant plus eczema and asthma. We were told by the asthma consultant that if the eczema was kept under control it would stop more allergies developing. So the other way round from your view. Have you kept a food diary and taken photos when eczema flare ups are particularly bad. That helped us identify his food allergies. But even when we had cut out his allergens he still had eczema flare ups, until you have the right combination of emollients and steroids it can take a while for it to calm down.

I'd use a non-biological washing powder (you may need to try several), scratch sleeves for night time, ask for samples of different emollients to try instead of soap so you can identify which works best, you can also buy a variety OTC, I used up the ones that didn't help the eczema as moisturisers for myself. Check you are using the right quantity of steroid cream (we were using too little) and keep hassling the GP with photos until you find one that helps. Push to see an allergy specialist, and I wouldn't cut out lots of foods unless it's done under medical advice. Use emollients to wash his face and hands immediately after eating, if he has eczema round his mouth lots of foodstuffs will irritate even if he doesn't have an allergy so you want to minimise that.

My DD had inflamed eczema at one point and I didn't feel comfortable keeping applying steroid creams they kept giving her so I researched and found out about calendula cream. I bought the Dr Organic baby one and started applying it 2-4 a day and it healed her eczema.

oil of evening primrose applied topically, often
naked in sunshine
no dairy
cotton sheets, he sweats at night which exacerbates the rash
Aveeno cream
very quick showers with no gel, shampoo, soap
Ecover wash gel for sensitive skins,
rehomed the puppy
copious amounts of filtered water

in SW France the water is v soft and he is fine,
as we all are, no scratching, then back here to harsh hard water, flare ups are immediate, it is unmistakeable, the difference.
We lived for 3 years in a village near Grantham, Anglian Water, awful, one of the reasons we moved away, we all had rashes, dry skins, stomach aches, eased as
soon as we moved

good luck OP, this is a mysterious affliction, poor little lamb, hope something here helps him, it is a long time until he will ‘grow out of it’

Both my dp and dd2 have eczema and its allergy related. Dp is dust and chillies/tomatoes/peppers etc and dd2 is eggs. Dust is a huge problem with eczema too. Don't think he might have allergies? If you can get access to an allergy test that would defo help, that's how we found out about dp as the clinic finally agreed it was eczema caused by his immune system being over active. Did a blood test and he had his results back.

left field- have you thought about Chinese Herbal Medicine?

went to a talk recently at my uni (I’m a scientist) and was very impressed with the results. Speaking to the department staff they all use CHM for skin issues.

you need a medical doctor qualified in CHM.

as @sarahc336 said, nightshades, especially potatoes, eggs too, we were advised to limit, constantly vigilant

Left field here too

But I tried donkey milk soap with some Eastern herbs which help with eczema. I buy it from a shop called Lote.

I know, I was skeptical too when my friend mentioned it but my son's eczema has cleared up completely apart from some small patches here and there.

Its worth a shot as its not harmful, there's no scent or actual soap ingredients.

As a severe childhood eczema sufferer here are a couple of things that I still do to manage my eczema that might be quick wins to help?

No one in the house wears any perfume. Have to pick specific non reactive deodorant, so does DH
No scented products eg fabric conditioner, scented candles, room fragrance
Only use very specific non allergy washing powder (filetti from Waitrose is the current one I can tolerate, nightmare, don't usually shop in Waitrose!)
If you go to a hotel or visit relatives, take bedding and towels washed in your own powder

To be honest I would personally be surprised if a dairy allergy was just eczema with no gastrointestinal effects but that's based on my personal experience (I have to stick to a low dairy diet) and I'm not an allergist. Like @SeaToSki dust mites are a huge issue! Gross little bastards 🤣 I'd be tempted to cut out everything I reasonably could to get it under control and hit it with all the drugs. Once DC is happy and not itchy, I would reintroduce. That way while you're playing with reintroducing they're mostly (in theory) eczema free.

I was consultant dermatologist led and fairly narrowly avoided hospitalisation for it but it does often get better and I can now manage it so a bad flare up is less than once a year. You're doing great, it's a hard condition for a parent to deal with. Keep going xx

Ooh cross post but yes to cotton bedding and clothes. I've got a little patch breaking out behind my knee right now, guarantee that's from wearing tights yesterday 🤦‍♂️