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!

Has she been tested for coeliac disease?

Does she have to wear a lot of synthetic fibres as part of her school uniform? Those can be a nightmare, esp at this time of the year when it's still quite warm and things like tights are the worst.

Has she tried an antihistamine to see if that helps reduce the itch? If it does, a drowsy one might reduce the overnight scratching as well.

My dd really suffers, the only thing that gets rid is the steroids and yes lots of moisturising. (Water or oil based seem to work best no scent)
I think dairy triggers it although she’s not willing to give dairy up.

Thanks for your reply. She doesn’t wear uniform so she can choose and has mostly natural fibres she is very sensitive to scratchy/ sweaty clothes.
I did get her a drowsy anti- histamine thinking it would kill two birds with one stone but she says it doesn’t make any difference.
She hasn’t been treated for coeliac disease but I’ve started keeping a food diary and she is minimising her sugar. I’m trying not to throw too much at it in case it confuses the issue but the sugar thing is something that I feel can’t do any harm and may be better for her gut.

So sorry to hear this. It's an awful thing. My DD, now 13, has been suffering with it for a couple of years and we've seen two dermatologists.

Is her skin broken? If so, the dermatologist may put her on antibiotics to make sure there's no underlying infection. Staph bacteria on the skin can make the eczema keep coming back. My DD has been told to apply Dermol before showering, to keep the staph down.

Steroids calm the surface inflammation but they don't really solve the problem. My DD was told to use steroids in conjunction with Protopic (tacrolimus), which is a non-steroidal anti-inflammatory. Apparently it helps to heal the skin barrier lower down. It seems like good stuff, with few or no side effects . But it will sting if applied on broken skin, which is why you use the steroids for a while first.

Moisturiser is good in conjunction with steroids because it means you need to use less medication to get the same effect, but it won't do much on its own.

NB I'm not a doctor, this is just what I've learned from the process. Good luck to you and your DD ❤

Wow thanks so many replies sorry if I miss anything. We did try giving dairy up for a while but so many vegan products have coconut or oats in them and we are vegetarian so it was too restrictive hence the food diary.

The skin is broken because of the scratching which she is really cross with herself about - another source of stress.

We’ve tried lots of different moisturisers and I think Dermol was one that really made it flare up unfortunately.

i do think the skin barrier needs a lot of work as her skin is so dry and she is quite thirsty but also shivering when she says she isn’t cold so something is off.

Thank you for the kind words. At the moment my main concern is her mental health.

I’ve heard matcha can help?
only hearsay and no proof just something I’ve read online.

What’s she currently using, how often?

Have you ever tried this? Its helped my skin balmonds.co.uk/products/skin-salvation?variant=41229520502846&country=GB&currency=GBP&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gad_source=1&gad_campaignid=17417256864&gclid=CjwKCAjwmNLHBhA4EiwA3ts3mZEka09ODscv0iG8wvdvnWtQq3oRNU2Ek7ffLwTemephhviGBVBqpxoCjNEQAvD_BwE

Following this with interest... 17yo has terrible eczema on hands and lower arms, he's trying to arrange GP visit

This sounds awful. I’m so sorry for your daughter. Ive had ezcema all my life with periods where it’s better and worse. Personally, for me, I finally have it under control through diet. I tried an exclusion diet and established for me nightshades - tomatoes, potatoes, aubergines, peppers and chilis - make it much worse. Also, certain proteins in dairy so things like Parmesan and Greek yogurt make it worse. It’s pretty tedious, but thankfully now I have it under control I can have the occasional bit of cheese without it having a significant effect. Having had ezcema since I was a kid, I had been back and forth to dermatologists and they would just give me steroids or other creams to control the symptoms. They kept insisting that, if anything in terms of allergies, it was a contact reaction, but when I was finally tested for the most common allergic materials for contact skin issues I had no reaction to any of them. Every dermatologist I saw said it wouldn’t be food related until a couple of years ago when I saw a new one who said, of course, it could be food and just to try cutting things out. It was pretty miserable to start with, especially as I was veggie for a long time and so have a lot of veg and a fair bit of dairy, but to be honest it’s worth it to have clear skin and not be driven insane by itchy, bleeding skin and the feeling of being on fire. It might not work for your daughter, but it’s worth thinking about. One thing I read is that apparently you often crave the things you’re allergic to - tomatoes and strong cheese are two of my favourite things. Good luck! I hope your daughter finds a solution. It’s one of those things that it’s difficult to understand how overwhelming it can be if you haven’t experienced it.

Mine was awful until I was about 14 and went on a belladonna exclusion diet - so no potatoes, peppers, tomatoes etc for a year or so. Cleared it up almost immediately and then I just slowly reintroduced to bring my tolerance up and am now find with belladonna. I now just very occasionally get flare ups which are usually when I’m stressed and managed with short courses of topical steroid creams.

It sounds a bit off the wall but worth a try if you haven’t already.

Try an anti-fungal cream like Canesten or Daktarin. I used it in desperation when I couldn’t find my normal creams and it really seemed to help. I think broken skin is more likely to get infected so while it isn’t the underlying cause it probably is related to flare-ups (or flare-ups make infection more likely - chicken and egg!).
Bonus that you can buy it anywhere and no side effects.

How funny that we cross posted. I’m really glad to hear you’ve been able to re-introduce these things - that gives me some hope! (And very pleased that you discovered this a lot earlier in your life than I did…)

Whilst I am reposting, this might sound bonkers, but it has made a real difference to my hands washing them in cooler water - when my skin was bad I would wash them in really hot water as it would give some relief from the itching, but it actually made it a lot worse and washing them in cool water helped bring the inflammation down. (I appreciate this will sound mad to anyone who hasn’t had bad ezcema - and maybe some who have - but I share in case it’s of any help to the OPs poor daughter, as it was something I got into the habit of without realising.)

Poor girl -

I had eczema quite badly as a child so all sympathy. I still get flare mini ups.

From my out of date knowledge it sounds like she needs to hit it hard with steroids to get it down so the skin has a chance to heal - I was always told you have to use a steroid for a couple of weeks after the symptoms have gone to make sure it calms everything deep enough. It sounds like @zaxxon has more up to date knowledge on treatments so ask your Derm about that.

It sounds like she may need some of it to be dressed, either overnight or under her clothes in the day. The Derm should be able to pass you a nurse for that, or the eczema society has good advice. For the mini flare ups I have if I don't get there fast enough I have to dress the bad patches or my trousers / the bed clothes rub and the irritate them.

Cut her nails down to the quick and file off all rough edges if you haven't. Do this every day - and if she absolutely has to encourage her to rub with her finger tips rather than scratch.

If there is anything rough or irritating in her clothes try and swap to soft jersey cotton while things calm down.

it sounds like you are moisturising three times a day which is essential. Aveeno isn't anywhere near moisturising enough for my skin, so I'd consider other options. I love O'keefes, but that is off the shelves while they reformat it. Lipikar Baume (La Roche Posay) is ace but expensive, so I would buy a selection of super moisturising body creams and experiment your way though - Vaseline, Nutrogena, Nivea all make souped up versions for extra dry skin - you just have to see what works for her. (Sali Hughes often has good suggestions - and I agree with her that all the NHS creams are crap.)

I hope it goes down soon. She will need to keep moisturising twice a day for year after it does and at least once a day after that as dried out skin always leads to eczema if you're prone to it.

At the first sign of recurrence, jump on it - it's so much easier to sort it in the early stages.

I've never found what I eat makes any odds, but it's worth trying the basic tests. Gas fire fumes and some makeup causes face flares for me.

If she's shivering there could be a systemic infection going on. It might be time for A&E. You're probably right and it's eczema plus stress, but those kinds of reactions can be a sign of something more serious. Sounds like she definitely needs that dermatology appointment

I did try this but if zilch for my eczema, although I thought it was an excellent overnight hand moisturiser for dry skin.

I only say this OP as I think there is no one size fits all solution, you should certainly try this once you have proper medical care in place, but it's lots of trial and error to find what's good for you.

We found balmonds very good but dermatologist warned us to be careful as you can build up resistance. Hydromol ointment, you need something thick, we use hydromol cream for mornings so her clothes aren’t sticky. Have you tried bleach baths? We use Milton’s sterilising tablets, oats in an old pair of tights and used to wash skin? Try not to completely dry the skin after washing leaving some water and then moisturising with cream helps lock it in. At night we use skinnies, if particularly bad one layer is wet and a dry pair over the top this really helps moisturise overnight. PB7 bandages for when the wet skinnies weren’t working.

Oh yes I forgot about the bandages. One dermatologist recommended a tubular bandage for DD's arms/trunk so she couldn't scratch them at night. We bought a Comfifast one from Amazon. She hardly wore it at all, though, since it was uncomfortable. You can get silk ones from another company, but apparently they don't work well with the emollients and skin creams.

I know you said she tried giving up dairy but actually in our case cutting down hugely (not out) on sugar and gluten (using gluten free products as much as possible) made an INSANE difference.

Also hydration from the inside-hydrating foods and water. Cream wise we used sudocream at night and avene cicaflate. This combination changed his skin to mostly normal colour and texture (14year old)

Also - there is one school of thought saying eczema is caused by an imbalance in the skin biome - too much staphylococcus, not enough of something called R. mucosa. In the States you can get a medicine called defensin that claims to redress this imbalance and improve your eczema.

I can't speak for it as I've never tried it - it's not available in the UK that I know of, and I'm wary of American medicine generally as it all seems so dodgy and profit-driven. But it's an interesting idea. Everything I read now suggests bacterial compositions in our various biomes are more important than we thought.

So many helpful and kind replies, thank you.

To answer a few of your questions and give more background:

swapped to e45 which seems to be doing something and at least causing no harm. She has been sensitive to so many others and loads seem to include alcohol that we are very wary and the state her skin is in I’m not sure if we would spot something making it worse.

having just moisturised it was very obvious that the skin on her back, although really dry, is a lot better than the skin she can reach which she acknowledges. Just hard to get a break from the scratching.

Food intolerance/ allergies have always been in the back of my mind because of family history and I do think we need to rule that out.

she wears cotton gloves at night but it must be uncomfortable and not foolproof for a determined scratcher.

I’m going to try the bath thing later today with her.

we have used hibiscrub to clean the skin as a preventative but not often.

cutting the nails is an obvious one that i am kicking myself i didn’t think about so thank you.

I have severe eczema and have been suffering with it on my face, neck and chest for a long time now. Dermatologists just keep throwing steroid creams at you but I think they make mine worse now too. I've just finished 2 weeks antibiotics for a Staph infection. Something has also happened to my face and its severely dry but all the creams I have either dry up my face even more or make my face burn and red. I've just put some Castor oil on after being recommended to try that. Your Daughter might be offered an immunosupressant or jak inhibitor. Previously I've been on Methotrexate and Rinvoq and I've been on Baricitinib for nearly 2 months. I Hope you have a good Dermatologist who will be helpful.

Thank you Dreamer2027 it’s so miserable and I feel for everyone who is suffering.

Patting rather than scratching skin can provide relief
applying a cold compress (wrapped) can also help

Dairy caused all my kids eczema, although goat milk was fine (bigger proteins).