Severe Eczema Teenager

[GlitteryUnicornSparkles]

I’m hoping someone may be able to offer some advice. Apologies if it’s long I’m just trying to give an accurate picture.

My son has just turned 16. He has a history of asthma (though he seems to be growing out of this) and a long list of allergies.

For many years he’s struggled with heat related itchiness on his hands and feet / ankles such as after a hot bath or shower, or getting too hot in bed (I have the same issue, with my legs), Dr said its quite common and theres a name for it I can’t remember and its not really a concern.

2 years ago he suddenly developed what was diagnosed as eczema on his hands, they were very dry and itchy, his fingers were splitting when he moved them and he was covered in cuts and had removed all the skin up the outsides from scratching. We tried every cream on the market to no avail. Dr’s prescribed emollients to leave on overnight which helped a bit but overtime this extended to his arms. Again the Dr’s tried different creams just reiterating he needs to be using at least 4 times a day including during school which he struggled with a little.

He then started to complain his face and neck were starting to feel dry & irritated, he was told he could use the emollient on his face so he was putting that on at night. We then got a notification that they were changing the brand of emollient but did not say it couldn’t be used on his face. Nothing was helping his arms at this point and he was cut to ribbons, they tried a steroid cream (which states not to use on broken skin on the leaflet) but it made him sting so badly he wouldn’t use it. One night he got hot, the emollient creams were runny and ran / got wiped into his eyes, he had a pretty bad reaction and he rubbed away 8/9 of the 11 layers of his corneas and ended up in A&E having to have anaesthetic eye drops put in every 20-30 minutes due to screaming with pain. He was then referred to an ophthalmologist and had to have drops in his eyes for several months. Whilst he was in A&E he was so irritated and clawing it his skin and bleeding everywhere that a Dr came & prescribed him oral steroids, antibiotics because they said his arms were infected and told him to take piriton on top of his normal antihistamines that he takes for his allergies to help with the itch. They made such a difference but of course as soon as he finished the very short course it all just flared back up. The Dr text to say the new emollient was not safe for use on the face and changed the emollient back!. Prescribed more creams.

He then started with issues on his legs. A dozen trips back and forth to the GP we just keep getting told ‘use them more’. He’s tried steroid creams at low dose that do not help at higher doses sting. He then developed the eczema down his sides. The GPs were of little help. Eventually they referred him to a dermatologist (exactly 12 months ago now).

Over the summer months his skin did improve quite a bit which helped him cope a little.

Come autumn / winter it’s just gone downhill rapidly. He shaved his legs because he thought it would help get the creams on better. After more antibiotics for infection, another dose of oral steroids and multiple weeks of topical steroid things were much improved, until of course he had to stop the steroids again, even though he weaned down strengths. We keep getting turned down for repeat prescriptions of standard cream too because he’s ‘using too much cream’ its a bloody battle to get enough.

At this point he was getting upset because some days he physically could not shower for the pain and wouldn’t leave the house without showering. Sometimes the irritation is so bad he’s punching walls out of frustration. He’s had a tonne of time off school. He’s doing guitar and engineering at GCSE, two subjects he loves but heavily involve using hands which he struggles to do. He was / is barely sleeping so was / is constantly tired and was put on prescription strength / addictive antihistamines to try help with the itching and to help him sleep but they did nothing. The GP wrote an exopodite letter to the Dermatologist in December.

In Feb my mum paid for him to see a private dermatologist who prescribed the tiniest tubes of Protopic given the size of area to use twice a day, however he’s been told he needs to cover up and stay out of the sun because the cream increases the risk of cancer - awesome just as we are heading towards summer. Its done nothing and his skin is getting worse.

We are now at a point where it’s literally his whole body. At home he won’t wear clothes because he says it hurts when they touch or rub against his skin. Some days the thought of showering makes him upset because it hurts so much. He barely leaves his room for this reason and has missed a tonne of school due to the same. He’s not only sore but very self conscious of how bad his face & hands look. He no longer goes out socialising with friends, doesn’t want to attend prom etc. He just sits in his room covering himself in creams when hes not in school. He’s perpetually in a bad mood because he's sore, irritated and tired which makes homelife stressful as does everything he touches being covered in greasy slime. I’m constantly having to walk round wiping everything he’s touched.

He showers once a day, he uses very cool / cold water. He uses prescription shower cream. He’s on antihistamines. We’ve replaced his bed, mattress, duvet and pillows and they are all anti-allergy & have anti-allergy protectors. The emollients make his bedding disgusting and thick with slime so he washes / changes sheets every few days. Everything is washed at 60 degrees c. We tried changing to non-bio washing tabs and removing fabric softener of any kind hes only getting worse. It’s having a massive impact on us both mentally as well as him physically.

We finally have an appointment with an NHS dermatologist in 3 weeks. I’m worried that all they are going to do is prescribe more bloody creams and turn us away.

Has anyone found something that actually helps or can advise on things to discuss with the dermatologist because this last two years has been pretty awful. He’s had other health issues on top of this so its all just getting a bit too much.

Sorry if I’ve rambled. Thank you if you made it to the end.

We replaced all the carpets in our house and it made a massive difference. I didn’t have a lot of money at the time so got cheap vinyl but dd’s eczema and asthma improved.

do you know which Immunoglobin they tested because that’s normally an indication they are allergic to something I thought but I think there are different types they test? DD’s was always totally off the scale (and weirdly she is also allergic to cats and dust mite the most).

We had allergy testing done - the blood test ones aren’t always that inaccurate and can be quite useful.

I had patch testing done recently and it’s totally changed my life - I came up allergic to 3 things and it turns out my eczema was always allergic contact dermatitis (I had it v severely) and now I’ve cut out the 3 things I reacted to, my skin is much better.

only thing that sorted out dd’s skin was changing the house completely. I don’t think the antihistamines did much but the steroids always helped.

I would push to find out which Ig test they did - also ask them to refer you to a consultant allergist. I found they are far better at getting to the bottom of these issues than the dermatologist.

your poor son - I know how distressing it can be when they are suffering so

Dd was on Dr Aron regime for a few years, great results to start with (not surprising given that the treatment involves steroids applied multiple times every day). Eventually though this regime lead to TSW (topical steroid withdrawal). Characterised by worsening eczema spreading to spots which it had not been present before.

She is so much better now and hasn’t touched steroids in 2.5 years.

if you google “ITSAN”, there is lots of helpful info on the website and a fantastic Facebook group.

TSW is awful but avoidable x

I’m so sorry to hear this. We spent a lot of money on private dermatologists for DC, prescribed cyclosporine, advised to have oral steroids ( decided against because this was offered just when DC realised it was TSW), increasing strength steroids (daily use of Elocon, also prescribed dermovate (even stronger), protopic. I had been aware of TSW for years, but dermatologists all very dismissive, and frankly, I didn’t want it to be TSW, so was relieved when they told me it was “just” severe eczema and that TSW was rare. It wasn’t until DC was 17 that they took ownership of their own skin and read up on TSW themselves and it was a lightbulb moment, seeing people with the exact same patterns of skin rashes. They decided to stop all steroid creams, 4 months of hell, then just as they were about to break and try cyclosporine, slow but steady improvements. They were helped enormously by the ITSAN Facebook group, and Instagram accounts such as drruthskinjourney (a GP who went through TSW herself), also the documentary on YouTube called Preventable (please please watch this). 3 years on, no steroids, skin 90% better, living a normal life. During the worst of it, Dead Sea salt baths, viscopaste with tubigrip bandages, eating lots of protein, but ultimately it was just time. I went slightly mad during all of this, endless research, questioning whether this was all woo woo alternative medicine etc. Sending lots of love to you and your son

I’m another person who is suffering from TSW. It’s nice to hear from people not telling others to get steroids.

OP I have had chronic hand dermatitis for years. The only cream that has helped me is La Roche Posay Citaplast b5. It’s expensive so I buy it new off Vinted.

My skin is manageable now but when I get my prescription emollient I put half of it in an empty container and I mix it with the Citaplast cream. I use this as an everyday cream. But if my skin is flared and splitting I will use the Citaplast by itself.

The emollient and steroids that I got from the dermatologist were not enough.

Pic of my hand right now and how they were before

So its been a hell of a time since I last posted in August, hence the long delay in response or update but for anyone who was following and interested in how DS is doing 8 months on….

Recap: At the appointment in August we were told DS had IgE levels of 40,000 and they were concerned about him having some sort of syndrome or blood cancer and referred him to haematology and immunology and refused DS more immune suppressants until he had been cleared.

DS got his appointment for haematology in September, unfortunately at this time I was in critical condition in hospital myself and he had to be taken by my Mum. My understanding from them and the letter the haematologist wrote was that they basically felt their time had been wasted, he is otherwise well and has no symptoms of cancer or anything similar to go along with the IgE levels to have warranted a visit and they did a cursory blood test for appeasement but did not mention results. We never heard off immunology and I was in no position to chase anything up.

When I got out of hospital I once again began chasing up the follow up appointment. We finally got given an appointment at the end of November.

Novembers Dr was different again. The Dr claimed they had not received a report or blood results from Haematology, even though we’d had a letter so know it had been done. This Dr referred DS for chest x-rays and full blood work up and re-referred to immunology. She prescribed 2.5 months of Cyclosporin and put in the paperwork to request Dupixent based on IgE levels and said she’d see him back in 8 weeks (end of Jan) for more bloods and to see how he was getting on with the dose he was on.

A few days later just as I had returned to work myself on light duties, DS began having tonic clonic seizures which has added a world of issues on top and in January was diagnosed with epilepsy which has scuppered his plans for driving lessions and now mean he can’t do the apprenticeship he was lining up to do.

We then received a letter from the dermatologist stating he had a significant vitamin D deficiency and was put on 10,000IU of vitamin D for 8 weeks and 600IU longterm thereafter.

I made the tough decision and started trying to rehome a couple of the cats but that has not proven fruitful.

DS couldn’t function on the anti-sizure meds they put him on and true to form a follow up appointment from dermatology never came but we were in and out of hospital so chasing up dermatology kind of slipped onto the back burner a little.

The cyclosporin definitely helped a little but was not the improvement we had hoped, within a week of stopping it he was back to square one and struggling with the concept of having to get through a practical exam at college with sore hands.

We put in a PIP application for the eczema & epilepsy and he recently got granted enhanced mobility but not daily living, some of the comments on the decision form were outlandish, so we have requested mandatory reconsideration and await a decision.

New anti-seizure meds and a few weeks down the line I started chasing again, I’ve called the secretary so many times but they never pick up. I left multiple voicemails. Finally a couple of weeks ago just as I was considering calling PALs again I got a call saying they had a cancellation and offered him an appointment. I was told they still hadn’t heard from heamatology and I’d have to chase immunology up myself as that was at a different hospital. Immunology sent me an e-mail to say that they had declined to see him and notified the dematogist of such back in Feb. They said that whilst his IgE levels were very high, high IgE levels alone do not indicate allergy and they are glad he was referred more appropriately for cancer screening. They essentially said that blood allergy tests are unreliable and that due to the nature of eczema its unlikely allergy is the issue and as such they are not willing to see him.

Latest dermatology appointment was Friday (2 days ago). This was yet another Dr, he was actually the nicest we have seen so far. He has put him on by far the highest dose of oral steroids yet, starting with 6 tablets (30mg) a day. He has also put him on a course of antibiotics as he feels he likely has some infection again. He’s had bloods taken again and the Dr says they’ll see DS again in 4 weeks to start Dupixent / Dupilumab, he agrees that with the anti-seizure meds, lower need for blood tests and its use in reducing IgE levels this will be the best fit going forwards. So now I’m just praying they don’t balls up and he actually gets an appointment in 4 weeks time. I did express my annoyance at never receiving an appointment when we should and having to constantly keep chasing. He assured me he will be seen so I guess we’ll see. But yes, 8 months on and barely any further along with treatment.

Thank you for the update OP I hope your son will finally get the improvements that he needs. It’s annoying having to chase up appointments and results constantly why can’t they be on a centralised system.

This is like saying put a plaster on a broken arm. You had childhood eczema, OPs son has chronic eczema. They’re not the same.

Sorry about your sons ongoing difficulties OP. That sounds horrific. The NHS gave me the runaround for a few years too. Everything is so disjointed.

OP I’ve just read your update. I’m sorry your son has been taken off ciclosporin, as it worked very well for me. I wish him the very best of luck at his next appointment 💐

@NewbieYou tbf, lots of people have suggested oats but I’m not sure if these need to be a regular thing to provide any benefit? Due to his epilepsy diagnosis we are avoiding baths as much as possible as for obvious safety reasons this means him having to leave the door ajar and me sitting close by.

Yes sorry the oats thing always really annoys me. Along with people talking about magical creams that fixed their eczema age 8 (they grew out of it). As if people with severe chronic eczema aren’t actually dealing with a chronic autoimmune disease (chronic eczema is AI and genetic rather than allergic in many cases).

Oats did nothing for my skin. The only thing that helps me is sunshine, swimming in seawater and Jaks Inhibitors. Even Dupilumab failed for me.

Well my DS's only external eczema triggers are washing powder (enzymes) and pollen so I strongly disagree with your specialist there. It took several months for changing to just soap flakes to work fully because the residue of the other washing powders had to be fully eradicated from the clothes and washing machine.
Also your DS's skin is currently severely inflamed so you might have to do things now that aren't a permanent change - like maybe give him a break from the cat for a little while?
Things that also helped us were eating lots of unprocessed fat and oil - different raw and slow cooked fats (not fried fat) - animal fats like chicken and lamb skin and fresh oils like olive oil, avocado oil and coconut oil. And lots of collagen. Kind of like moisturising from the inside. Avoiding all sugars and processed carbs for a while also helped. Once the skin's calmed you can eat more normally. He can still eat things like sourdough, baked potatoes, rice etc.
It is very individual though. I hope you figure it out.

I don't know what it is with the NHS and eczema but either they prescribe the weakest of steroids and emollients that actually make thing worse or they go for the full blown immunosuppressants. Both my kids have very different types of eczema and nothing that the NHS prescribed helped - including the hospital derm dept) for DD1 we saw a paediatric consultant privately who specialised in allergies who gave her some prescriptions relating to allergies and arranged for her NHS GP to prescribe long term - hers was linked to allergies and urticaria, she's been off all medicine and creams for years now and has only had two outbreaks in ten years.

For DS we saw a different consultant privately who solely specialises in Eczema, I'd read about him in The Times.

I did read an interesting theory that eczema in a lot of cases is caused by an allergy to detergents - and detergents are in handsoaps/shampoo/washing liquids etc so not easy to avoid, but in my kids cases it was caused by something else.

Eczema is awful op but I wouldn't rely on anything the NHS prescribe.

Unfortunately not everyone can afford private care, my Mum paid for one private appointment for us and it was an absolute waste of money. He didn’t want to speak to us, he didn’t want to take a proper look and only prescribed enough cream to do a single day at a time but couldn’t request more than every two weeks.

that's shocking @GlitteryUnicornSparkles both of the consultants we saw privately couldn't do enough for us and immediately sent the prescriptions back to our NHS GP, if you pm me i can provide you with details of the one i used for DS, there's no initial charge, you just send him some photos / details and if he can help its a one- off lowish charge, he worked miracles for DS and if he can so the same for your DS I'd be happy to contribute towards the cost.