Help please! Cannot get skin condition under control (pics)

[Claw001]

I’ve posted about my son before.

Just before Christmas my son (14) had some kind of severe reaction on his face. GP thought allergy. Anti allergy tablets didn’t help, it got much worse and also spread.

Back to GP who gave steroid tablets, steroid cream, antibiotics and anti allergy. It cleared, for 7 days, until the day after steroid cream stopped, flared back up again and got worse.

Back to GP, said no more steroids. Gave moisturiser and anti allergy tablets. It got much worse.

Back to GP, who gave steroid cream, antibiotics, anti allergy, told me not to use moisturiser, as son had allergic reaction to it. Nothing cleared it this time. Referred to Dermatologist.

Dermatologist today, has said eczema, definitely no more steroid cream, as it’s making it worse. He has prescribed steroid tablets for 5 days, a different moisturiser and anti allergy. Come back in a month. I told him the minute the steroids stop, it flares back up again and gets much worse each time and moisturiser doesn’t work or just aggravates it. He has ignored.

What can I do?

Thanks king I am having a read now.

King It’s injections? Can my GP give these injections? I assume they have to be ordered?

I’m going to print off and take to my GP tomorrow x

Yes there are injections www.dupixent.com/atopicdermatitis/about-dupixent and I would assume the nurse could do them.

I have no personal experience about this drug, it is just something that comes out several times for severe / atypical eczema. I would talk to the GP about it and ask for him to do some research and/or evaluate if this is something that it is worth trying since your son is in this condition since November/December.

Have a look on pubmed , www.ncbi.nlm.nih.gov/pubmed/?term=dupilumab
read the review papers such as www.ncbi.nlm.nih.gov/pmc/articles/PMC6116085/ , print what you believe relevant.
Make sure to also look for the side effects
www.ncbi.nlm.nih.gov/pubmed/term=dupilumab+side+effects

Have you contacted the National Eczema society www.eczema.org ? They have a fact sheet about dupilumab if you type the drug in their search box www.eczema.org/search . It might be worth joining them to get their advice on how best to help your son.

I'm no expert (apart from my family having similar issues) but that looks like dermatitis to me, rather than eczema. I suffered with that terrible as a teen, and I eventually worked out that it was the cardboard on shoe boxes (I worked as a Saturday girl in a shoe shop). The boxes had a sort of fluffy exterior. Anyway it triggered dermatitis and allergies for me, big style.
I was tested and I am allergic to a chemical which is in things like toilet paper!
My daughter is affected by water - her skin is awful whenever she showers. We have found that Liz Earle Cleanse and Polish which goes on creamy and is wiped off with a cloth is best for both of us. M&S and Boots sell it.
I wash in non-bio Fairy (anything else affects my DH's asthma) and we can't use feather pillows at all.
About your DS's blood results. A TSH of 4.77 would have been a worry, but I see it is much less, so unlikely to be causing the fatigue. His Ferritin Assay is a little low, so he could do with being prescribed some iron.

Thanks, we are going back to A & E again. His skin is much worse today and he is really distressed. He cannot be left like this until April or even Saturday for Private Dermatologist.

Good luck

Good luck OP

I suddenly developed horrific eczema on my face 2 years ago (when I was 23) that just spread and spread, I was swollen and red raw just like your DS so I really feel for him. I tried absolutely everything, every moisturiser and steroid cream and diet you can think of, I even had allergy testing done at the hospital but nothing worked. I found the NHS useless to be honest, I saw countless doctors (and suffered for months on end waiting for dermatologist appointments) but like your DS, as soon as I stopped using steroid creams it would flare straight back. The only thing that really helped was Protopic ointment. It's an alternative to steroid cream that doesn't thin the skin, although it has some pretty unpleasant side effects (mostly a horrible burning feeling the first few times I put it on). It was totally worth it though because my eczema is now almost completely under control. I do still have to put Protopic or Eumovate on small patches a couple of times a week, but it's nothing like as bad as it was. I think it can only be prescribed at a hospital (could be wrong on that though). It might be worth asking to try that instead of steroids?

Another thing that helped was moving out of my mouldy flat last year - in fact I think living with mould is what caused my eczema in the first place. Could your DS be exposed to mould anywhere, at home or at school maybe?

Hope everything works out for you

A&E have streamed us to paed. Paed is trying to get Dermatologist to see us today!

We managed to see a dermatologist!

We have steriod cream for 2 weeks. Then protopic and Aveeno cream, but only once steroids have healed sores (she told me moisturiser did not contain parafin, but I’ve read the ingredients and it does!) she seemed to think my son had an allergic reaction as it was applied to open sores. She said he has eczema, which is your immune system fighting off a environmental factor.

I did ask about allergy testing, as what she was describing, to me, sounded like an allergic reaction! and Dupixent. This Dermatologist said it’s a process of elimination and finding a moisturiser which works, when skin is clear.

Appointment with consultant Dermatologist on 1st. At least I have some sort of plan now to tide us over. I can try what she recommended, if it works, great! If not next appointment, I can discuss further. Phew!

Great news!

I’m a little confused by her explanation she was basically saying you have eczema, you will have it for years, manage it!

Although she agreed, there was a ‘trigger’ she didn’t seem to think it was worth investigating further. Just seems strange to me, that it happened over night and so severely, with no previous history.

I mentioned diet and she dismissed this, as only 1% of eczema is caused by diet.

Anyhow, happy for now we have something resembling a plan to try. Fingers crossed

Thank you all again x

Oh for goodness sake! Not worth investigating triggers? Process of elimination?

There are skin prick and patch tests for 100s of common triggers. They can only AFAIK be applied to healthy skin, but they can be used to quickly eliminate so many potential triggers.

Hope your ds will at least feel more comfortable until you see the consultant dermatologist. It's horrible when your baby's suffering and you can't stop it

Though TBH you have eczema, you will have it for years, manage it is true. It's just that part of managing it is knowing what makes it flare!

My dd had a similar looking issue last year , mainly around her eyes which were very swollen and dry and also a bit on her arms . Our GP left her on steroid tablets until we saw the dermatologist who gave her Protopic cream which seemed to do the trick , she’s now got a lower dose protopic cream ( 0.03%) and only needs to use it twice a week . We never got to the bottom of what had caused it as we had changed nothing and she wasn’t using anything different as she has a history of peculiar , sensitive skin . Hope your ds improves soon .

I'd ask your GP to test his B12 levels, especially with autism too. My daughter was like this in that she was very sensitive to so many things especially Azo Dyes, MSG, artificial sweeteners, soy allergy, cochineal allergy & more. The sensitivity all eased off massively once she started on B12 injections, her allergy completely disappeared.

There are benzoate preservatives in the prescription creams, which is why they also made my DDs skin worse too.

I used to make a cream with oat milk, chamomile, Shea & coconut butter & lavender. Plus cutting out all of the problem foods & toiletries. This used to help a lot until we discovered & got the B12 deficiency sorted out

Definitely try the OST's in water as suggested above. And Aveeno cream. Hope you get it sorted, I have lived with exczema all my life and it's horrible.

I mentioned diet and she dismissed this, as only 1% of eczema is caused by diet.

We saw an NHS dietician & they said exactly the opposite of this. We'd identified DDs triggers by the thanks to a naturopath friend, but the dietician confirmed that the colourant, preservatives etc were quite a common cause

Has a vasculitis rash been considered?

I asked my GP for a repeat blood test yesterday. We are going for that today.

Ds also pointed out that he has tiny red spots on both of his arms (like tiny freckles) which I hadn’t notice before. I will try to get a picture, they are really tiny and not freckles.

I also mentioned coeliac and the fact he often has an upset stomach. She said he would feel pain the minute he ate gluten.

She just kept reiterating it was definitely eczema. I was trying to get across, yes I appreciate that, however what is the trigger! She said the wind blowing could be the trigger and I just felt a bit like a hypochondriac!

I was diagnosed as coeliac a few years ago. I didn't have symptoms. Would be worth testing for. A coeliac friend of mine has the form that comes out in a bad skin rash.

My DS has terrible eczema on his legs. We've tried everything and the only thing that actually works is aloe Vera gel. I appreciate different remedies work for different people but this genuinely cleared up his cracked, sore, itchy skin after 2 days.

I've just read the full post (🙄) and it doesn't sound like my advice is going to help at all!! Please feel free to ignore and disregard! I hope you get some answers soon. It must be just awful for you both xx

Went for blood test and I asked the woman if she could also add Coeliac screening to the test. She was really helpful and did!

liveatcity no it’s helpful! I need to find a moisturiser he doesn’t have a reaction to!

My GP said not to use any parafin based moisturisers, after severe reaction.

The GP with a special interest in skin told me that’s nonsense, it’s the brand. Applied 2 different brands to ds’s skin. Severe reaction.

The Dermatologist yesterday, I told her of previous reactions and she has agreed with previous GP, it’s the brand! And gave me 3 different moisturisers, all containing parafin!

She told me Aveeno, didn’t contain parafin. The ingredients state it does. But others here have recommended it?

They also keep giving me soap replacements, after I’ve told them ds doesn’t use soap!

I suppose I could try them, once his skin is clear from sores? Or just avoid them and try something without parafin?