DD16 raging eczema any ideas?

[perfectview]

DD is 17 and really suffering with hot dry eczema over 80% of her body. Obviously we are moisturising like crazy and telling her not to scratch (obvs so difficult for her especially when asleep). We have an appointment coming up with a dermatologist she is under the care of at the end of the month. She had had all the usual steroids (kept it a little bit at bay but not cleared it totally) and light therapy which was stopped as it wasn’t helping. She’s reluctant to use steroids again as she is scared she has toxic steroid withdrawl (I’ve googled symptoms and I’m not convinced). She is stressed because of the eczema but also because of college work etc. Her skin has been worse since term started in September. We’ve been trying to help her reduce her stress too but it is on a cycle relating to her skin and each is making the other worse.

I haven’t seen her this low for a very long time and never over her skin. To complicate matters she was using Aveeno to moisturise but we swapped as she thought it was making it worse and she said eating oats made her tummy hurt. As we have allergies in the family I thought it best to avoid. She also avoids anything with coconut.

It’s hard not to go down every miracle cure rabbit hole on the internet but I would love to find something to give her some relief from the itching and pain if anyone has any ideas?

Edited to say title is wrong and DD is definitely 17!

I found bee propolis cream really good for my eczema. Also bathing every other day rather than daily, much to my mothers disgust.

I use Epsom salts in the bath to clean wounds from scratching and then moisturising after every bath or shower. Drink plenty of water.

also, please don’t say “don’t scratch” honestly it’s the worst thing to say to an eczema sufferer as we honestly can’t help it and it wears us all down when you hear this on repeat.

I would get a full allergy screening blood test. We got this through a private paediatrician and turned out DD has a very severe dust mite allergy which we had no idea about. Now we know what's causing it its completely under control and not using any prescription creams now.

The NHS might not do this because its too expensive but its cheaper in the long run than trying out different medications and going to endless appointments.

We used all kinds of steroids and couldn’t get on top of it. We used Salcura, which I found on a Facebook advert! It is all natural and it cleared it straight up. Game changer, all gone in less than a month. It did reflare but only once. Still eczema free - still use the spray- almost two years later!

I posted this on a previous thread for relating to a child’s eczema as this is what we did for our child. They do adult equivalents. I really recommend this is you are looking to try something non steroid based- you have to stop using everything else. It might take a couple of months but during that time is it still better than we ever got it from the steroids.

My DD23 has always suffered with eczema/asthma/allergies. She got to a point where she was really struggling a couple of years ago and doctor prescribed her Tacrolimus cream (Protopic) and oh my, I wasn't expecting much but the difference in her skin within just 2/3 days use was absolutely astonishing, her skin looked fantastic and cleared up completely! It's not for the faint hearted, it burns like buggery the first few times it's applied but this does improve, I think it's an immunosuppressant and that there are other risks. She decided to go for it as her eczema was making her life utterly miserable otherwise. Eventually she went to just using it once a week or so for maintenance. She's also awaiting allergy testing to try to get to the bottom of it, but the Protopic cream was an absolute game changer.

@Bluemin can I ask, what did you do to get rid of the dust mites?

DD has a sensitivity to them, and I've got mattress and pillow covers, but we live in a dusty house and her room is full of knick-knacks!

Have you tried oilatum in the bath? I find that a bath in that before bed tends to calm my skin quite well

My son's consultant put him on Vit D3 and the bleeding, itchy eczema he'd had since he was born was gone within a week! D3 with K2 4000iu daily.

It's so difficult because once the skin is that inflamed and broken it sort of then has a secondary inflammatory reaction and is very susceptible to infection. Dd can only tolerate double base, everything else makes it worse. Her triggers are washing powder, can only tolerate non bio persil powder, suncream- all of them trigger an outbreak, hormones and chlorine sometimes. Cool baths with oats soaked in can help. Antihistamines can help, especially the ones which make you a bit drowsy if anything just to help you sleep, then when you sleep better you have less stress and inflammation.

Mine is definitely stress related and I get a huge flare up which needs steroids and antibiotics eventually.

I would avoid anti fungal creams without medical guidance as they can inflame eczema and broken skin. I use a ketokonozal shampoo which can also help.

Use the shampoo as a body wash I should've said. Although not all the time.

I heard recently on a Zoe podcast that low Vit d and b12 can be linked to eczema and acne. Might be worth a blood test.

Wow that’s amazing. I just posted about this

Left field but she could try the contraceptive pill? It has completely got rid of my psoriasis

My Dd had awful eczema from 1 month until after she was 1. I couldn’t put her in dresses in the summer as she’d scratch and scratch. Suddenly it disappeared sometime after 1 and I’ve no idea why. But she later developed a nut allergy. It’s definitely all linked.

I have always suffered horrendously with eczema/ psoriasis.

i have it under control now by taking cod liver oil tablets and the occasional sun bed. I appreciate the risks of a sun bed and your daughter’s age but it’s the only thing that has really calmed my skin down.

My eldest has the worst eczema as a baby. Has to wet wrap his whole body. I don't think they do wet wrapping any more?

Anyway we tried EVERYTHING from steroids to every known cream. We eventually found out he has significant food allergies. Has to carry an EpiPen etc .. His eczema is non existent now. It took years of hospital visits to establish all his allergies.

I think food diary a good idea - also time of year - DS had flare up same sort of time each year finally worked out it was a tree pollen - though worked out before that many sunscreens also caused flare up- and if you haven't look at washing power - several family members who don't really have eczema get out breaks with some washing powders.

https://eczemaclothing.com/products/starter-eczema-pack-for-14-years
I haven't tried these people but this type of pj clothing made a huge difference to night time scatching avoidance.

DS the worst did get better when we moved - possible water hardness releated possible age - who knows. However exam stress did cause problems - but scalp issues - huge flakes and redness - rather than body eczema that took forever to get under control.

Hopefully the dermatologist will have some answers for her.

Yes we used Surcare for years as a non scented non bio. Still use non bio now and she’s 21 and has no eczema. Her skins is beautifully smooth now but she still has the nut allergy. Luckily it has never been severe.

I sympathise as we had this but it was steroid addiction. Got to a point where steroids no longer worked so had to stop then went full body eczema. The steroid creams are strong hormone creams so cause of the change to immune system she had all her glands come up all over her body, they had slowed down her adrenal glands so that the body doesn’t produce enough steroid hormone hence the spreading eczema )red skin syndrome) it changed her HgE levels so she became allergic to stuff that she previously wasn’t. She went through withdrawn which does have a terrible night time itch but there’s no speeding that up - it’s a process. Have a look at the latest research by Dr Ian Myles on steroid creams damaging the mitochondria - his work is being peer reviewed and there’s been some success using Berberine in trials to recover from topical steroid damage. Also if on Facebook there’s a great group called ‘Reversing Iatrogenic Steroid induced Mitochondria Dysfunction.
Also a charity called ITSAN are v informative. Dr Ian Myles can be found on you tube or you can read the research papers by googling. If I find them I’ll come back. Also Dr Rapport has some useful videos on it. Also search “Skin on Fire” that was an American documentary but has been uploaded to you tube.

If she’s stopped the steroids then expect her to get worse before she gets better. My daughter went almost 100% full body eczema , plasma weeping, elephant skin, intense itch (not possible to stop scratching as it’s a deep bone withdrawal itch) my daughter had no lasting damage from the scratching. It’s a long healing time but she healed. First six months were the worst then the flares get less intense. All the best- I understand the pain of it. Steroids will eventually stop working so no point kicking the can down the road a d they do such damage when used long term. I find consultants are a lot more open to it now and not as much in denial about steroid damage (even though side effects are listed in the leaflet) I think this is because of the latest research being done.

If you are looking to have her tested for food intolerances, I can recommend the York Test. It is a home blood test, but you only need a small amount, and results come back very quickly. Dairy is a fairly common one that is linked to eczema, which is very unfortunate if you are a fan of chocolate, as I'm yet to find a dairy-free chocolate that hits the spot 😁

She may also have very sensitive skin. I do, and was advised to use products that are lanolin- and scent-free, and to wear Heliocare SPF every day. Non-bio laundry products may help, as might bathing fully every other day.

Please avoid telling her to not itch. She can't help it, and scratching will help to relieve the burning sensation, but may cause her skin to bleed.

Minor thing but I changed my shampoo to MooGoo. Showering was sending chemical stuff over my body and the change was transformative.

Im afraid the answer is a big tidy up and having minimal stuff in her room. All her stuff is in plastic storage boxes under her bed. I damp dusting regularly and use a natural dust mite repellant spray. Also a plug in dust mite repellant. Covers on mattress, duvet, pillows and a specialist dust mite vacuum cleaner for the carpet. Its a real pain but has worked!

And always have the door to her room closed so no dust from elsewhere can go in. And also keeps the cat out!

use products that are lanolin- and scent-free

Interesting as DS had issues with lanolin and everyone made out I was mad.

Also many creams made him worse till we founnd one that worked - aveeno for us - but clearly not for OP DD.

E45 sends my eczema insane and no one ever believes me. I remember reading that lanolin was bad for eczema, E45 contains lanolin so it made sense.