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.

I’m not near Sheffield and unfortunately I’m not in a position to be able to afford private care myself.

We have had one private appointment which my Mum managed to cover the cost of for us but he was pretty dismissive and just prescribed more cream that has done nothing. It felt like a waste of money quite honestly.

We finally have an appointment with a senior NHS dermatologist in 3 weeks time. I just want to be as prepared as possible this time around with knowing what things to raise.

I will ask and push for patch testing.

My Mum has just spotted a post on a local facebook page by someone who says since moving to the area a few months ago their eczema has been the worst it ever had and she thinks the water here is heavily chlorinated / can smell the chlorine. A few people have commented about water filters. I’ve just ordered a water filtration system for the shower to see if that makes any difference.

I’ve also had a look into the Salcura range mentioned above, it sounds good and the reviews are too, I’ll definitely order some of this to try as well once I get paid.

I’ve just tried to have a look at this as keeping up with costs trying to manage this is a lot. It says it is PIP from 16. Is the criteria technically the same? I’ve heard that PIP can be difficult to get even for the most severe conditions so I’m not convinced he would quailfy.

I am so sorry to hear this - it is really difficult but you say he’s allergic to cat dander and yet you have 4 in the house!

I am allergic to cats - I only have to be in my friends house for 5 mins (1 cat) and I am itching all over / eyes running and skin starts to flare

sadly I think it’s time for some very difficult conversations to manage his dust and cat allergies as without removing this irritant it’s unlikely that anything stands a chance of helping.

And if you keep the cats - you need to be looking g at removing all the carpets - hard wood flooring/ cats not allowed in the lounge / bedrooms so that their dander cannot spread - it’s really hard

Have you ever heard of topical steroid withdrawal? It can happen with protopic.
I hadn’t heard of it, but now believe I’m suffering from it.
Your poor son. It’s hard enough being 16 never mind this.
Research is power with dermatologists. They are busy and want to help, but they look at creams as helpful which they often are in the short term but definitely not in the long term.
I asked for phototherapy. If your sons skin likes the sun this could be helpful. It’s a long process but feels more helpful than creams.
I would also recommend red light therapy.
No moisture treatment works for some but not for others.
stress will make it worse but so hard not to get stressed with it.
He is lucky that he has a lovely mum like you that is trying to help him x

How awful for him.

I'm 41 now and my childhood eczema sounds very similar to your sons. I was hospitalised regularly when it got bad (but the NHS was different back then) when seeping / sore the only thing that helped was a steroid cream called Elocon and zinc bandage called Itchopaste that in conjunction healed me overnight, until I reacted again usually within a matter of days.

Anyway so fast forward to 19 year old me I was still suffering but then added in some severe gastrointestinal issues, my skin as terrible as ever. After I few months of scratching heads by the doctors I was diagnosed with dermatitis herpetiformis alongside coeliac disease

It is an immune response to gluten, I cut that out of my diet and within a week I had no eczema, none. Being gluten free is easy now but back then it was very difficult. I still get it wrong, just last weekend I went for a meal, ordered a gluten free option and within 24 hours my whole body was in flare 8 days later it's finally just settling.

So my advise is, that in my experience eczema is an inflammatory response and you need to find what it is. Get a diary and spent two weeks COMPLETELY gluten free and see what happens, you have to be strict with breads, certain chocolate bars, even things like crisps and oxo cubes. If nothing changes try the same with diary. And so on, I think this maybe your answer.

Personally I have an allergy to eggs, peanuts and gluten. It's tricky but knowledge is power x

Oh sorry, I assumed it would be 18. Yes you may be right but could still be worth looking into that if things don't improve.

Another vote for trying salcura products, although when we used them it was about 8 years ago.

My DC is over 30 now. Was told it was “childhood thing” “ he’ll grow out of it”….nope he didn’t

the key lessons we learnt

1. minimal showers, avoid hair washing, avoid soap, and avoid baths
2. cotton gloves at night - he does still wear. Teach them to slap/pat for the itchiness rather than scratch.
3. sunshine
4. winter is worse with central heating - humidifiers in small quantity but can be issue in poorly ventilated houses
5. avoid steroids. Only in emergency for as short a time as possible. There will also be a massive rebound when stopped, which seems like it will never end. It does eventually, but not without a lot of suffering
6. it took till his 20s for son to really “own” his condition and manage what he does versus the impact on his condition. only Then did he really twig connnections to diet…he loves spicy hot food but knows it makes it worse. So he eats this only when he knows he can control in days after. Some nuts also set him off- not all though and not peanuts ….he knows now how to wash successfully daily (even after exercise) without soaking his whole skin, and knows to reserve full showering and soap substitutes all over to days when he is actively do hard physical workouts . No he doesn’t smell, he is very good at focusing on areas needed, and washing clothes in neutral washing machine chemicals

but he and I both accept it won’t go away, pending a miracle cure from science. It is a constant battle to keep skin under control, and once or twice a year he looses and goes through a miserable time to get back into control. My reaction to just the title of this post was “oh, golly”. As a mum is heartbreaking to see your child suffer like this

right now dc regime is as follows below …but people have suggested a number of things . Everyone is different, so it’s worth trying and pushing with dermatologist to ensure they review effectiveness.

another thing you MAY want to consider, but maybe for when he is older as don’t know age limits, is to find a hospital running clinical trials on new treatments/practices. These trails come up fairly frequently (pharma is interested in finding cute as market is massive! There’s a fair amount of active research). The advantage of being on CT trial is that you get attention of clinicians for your dc, through obviously you need to be aware of risks. These will be CT stage 3, treatments will already have past safety testing and trials in healthy volunteeers for safety. Stage 3 trials then focus on effectiveness of treatment in individuals suffering form condition. Blind studies, so dc may get placebo…

You ds symptoms are pretty much exactly what my dd has had since she was 8 weeks old.

Do your research into methotrexate. It has been an absolute game changer.

The thing you can't remember the name of sounds like Urticaria, it is an sensitivity reaction to the histamine naturally produced by the body and hot and cold are rhe most common triggers.

You will have a bit of a battle on your hands, I ended up in a battle of wills with dd's consultant but stand your ground.

Dd has been on it 6 years and honestly it has changed her life and mine.

Feel free to pm me if you want more info.

Interesting! We were told by the private dermatologist that prescribed the Protopic that it doesn't have any of the drawbacks of topical steroids. My biggest concern about being prescribed Protopic is / was that the advice is to keep covered up and out of the sun as it increases the risk of developing cancer. Obviously with summer on the way and the fact that last year the only thing that provided some degree of improvement was the warmer weather and the sunshine this isn't ideal. As it stands it hasn't helped in the 2 months he has been on it so I am going to speak to the NHS dermatologist about stopping it.

I have found out the hard way dermatologists don’t necessarily mean to not tell the truth, but when you research things a lot comes to light.
My dermatologist is a lovely man and keen to help, but often there is no instant fix.
I found going in saying no protopic no steroids as I rebound what else is there helped.
Good luck x

Agree with above, eczema absolutely triggered by allergies!

However, doctor is also right that testing is inaccurate. Only sure way to know is to see what happens when something is eaten or come into contact with the skin. The blood tests, for example, only give you how likely it is that he would have an allergic reaction to something. Also, you need to give them an idea what to test for.

Unfortunately the underlying cause right now is likely hormones due to his age. Not something he can do anything about. Stress likely making it if not worse, then not better.

Natural sunlight does really help eczema, so covering up not a great idea if you have some UV where you are - just don't put on the steroids that shouldn't be in the sun. There are plenty of others to choose from that aren't affected in this way so ask for those instead. Obviously, safe sun exposure - especially if sunscreens will exacerbate the skin.

Have the consultants suggested oral steroids? Sounds like a good idea.

I would say that if you can keep him off school for a few days to let him mentally and physically rest, that would be good. Eczema is tiring so recovery time should be acceptable to the school. If he had chicken pox he'd not be able to go to school covered in itchy spots, surely not just because he'd be contagious. Everyone would accept that it would be too much to expect a child to sit in class itching like crazy.

Other than that, clean, routine, reduce stress and eat well.

Your poor son

Ask for Dupixent. It's an auto injection, helps with the immune system

In fact, bloody insist on it because it sounds like your poor son needs it badly

eczema.org/information-and-advice/treatments-for-eczema/dupilumab/

He has had oral steroids twice, once given by the hospital and once given by the GP, we had to really fight for the second round as the GPs are not for prescribing them. The maximum amount they will give is a 4 day course and whilst they work miracles for the few days he’s taking them the second he stops he just flairs back up.

As stated in my original post, he has had tonnes of time off school because of being extremely irritated and unable to concentrate, too sore to shower or partake in some lessons. The school are not understanding. He’s had a lot of time off not just with this but other health issues too and I’ve been called into school for meetings over attendance and threatened with the welfare officer. He sits his GCSEs in 3 weeks time and he’s missed so much his grades have dropped and they’ve just moved him down a paper in some.

Having been waiting over a year for an appointment despite expedite letters and having to get PALs involved because they claimed when chased up they hadn’t had any referrals and finally securing an appointment with a senior dermatologist when PALs got involved and they magically found everything, we were notified on Thursday with just a week to go that they have now cancelled this appointment. We are devastated. I rang them to ask when a new appointment would be and was told he hasn’t waited the minimum wait time based on the referral date, which was an expedite letter not the original referral that they once again claim they have no record of! If I get nowhere with them again today I will have to contact PALs again.

Allergies are very poorly understood,

It would seem in your sons situation that it would be worth trying excluding various common allergens rotating through four week blocks and see if any associate with any improvement.

On the cat front - does it improve on holiday?

Oral steroids and high dose antihistamines are a standard treatment for allergic reactions so if he’s had a good improvement with that it would support the theory that it’s worth trying.

My skin issues are different and apologies if this is not useful but I have been using various creams and the multi biotic from Hannah Sillitoe. She suffered with severe psoriasis for many years and created her own range to help herself winning investment on dragons den. Her website has many photo reviews so you can look and see if any of it might help your son particularly the multi biotic liquid.

OP this sounds absolutely exhausting but well done for persevering and trying to advocate for your son.

I don't have eczema but do have very sensitive skin and various allergies. I hoover my bedroom fairly fanatically, don't drink milk (I do have a bit of cream and cheese now and again and that seems ok) and use Surcare laundry liquid (rather than powders) and no fabric softener - just a bit of white vinegar. I also use fragrance-free shampoo and conditioner bars as they're less likely to irritate. I wish you the very best of luck - as others have said, it's very draining.

I’ve just had a light bulb moment, I’m a life long eczema sufferer but no where as bad as your Son. I’ve been on methotrexate for rheumatoid arthritis and haven’t had an eczema outbreak for years, I’d no idea the two were connected, l thought I’d outgrown it.

Your poor boy.
I really feel for him. Oral steroids are amazing while you take them … the rebound is awful though.
have you had his bloods checked? I’m sure you have. I would get him a B12 shot. Most beauticians etc do them. I pay £25. I can show you the difference it has made to my face. It’s amazing. I suffer from eczema and steroid withdrawal. It’s been awful. Time is healer when you’re my age - but not when you’re his age, he wants results which I get.
Do you know what you would like the derm to offer? I paid to go private and then was just offered steroids and Protopic - which the rebound for is awful.
I researched a lot and learnt going in with what I would like them to do would be most helpful. I asked for UV therapy not immunosuppressants - but your son might want to look at immunosuppressants for relief at his age. I really hope you can get an appointment soon. It’s not ok to keep him waiting - he deserves some help.
there’s been a lot of press about waiting time for derm appointments recently. It might be worth writing to your MP as this must be severely affecting his and your mental health.
Please do message me if I can help anymore. I think having someone to talk to is so helpful. Good luck xx

DrRuthSkinJourney on Insta does a lot of eczema and topical steroid withdrawal - she's very sensible.

I’d look into phototherapy OP. I suffer with eczema and some psoriasis, my brother suffered horrifically. Creams help me to a degree but he was like your son. Phototherapy made a huge difference to him.

I am sorry your appt has been cancelled. I very occasionally use sun beds when I struggle to get on top of it (we are talking 4-6 mins twice a week maybe every 2-3 years) as they are so accessible. We’ve never found out a trigger for either of us.

The heat thing, is it cholinergic urticaria? Only because that can be incredibly itchy as well, I have it and have had people message me about it on social media who are saying they can’t live any more because of it
I saw a brilliant dermatologist in manchester who after 28 years of it immediately put me on a biologic medication and I no longer get hives or itching
just wondering if it’s a combo of that plus the eczema adding extra itching

As others have suggested, I would recommend immunosuppressant medication. Methotrexate has been life changing for me, with minimal side effects. I wish I'd started it sooner than I did as my skin would be more resilient now if I had. Please don't delay.

Working out the triggers, trying different creams etc is hit and miss and it can take a long time to see any improvement (if any). Your son can try this once his eczema is under control.
Personally a good skin care routine, avoiding known triggers etc just tinkers round the edges for me. Its the methotrexate that keeps the eczema at bay.

Thank you everyone for your continued support and suggestions / recommendations they are appreciated and I’m noting and researching all of them.

I will try to answer everything raised.

@ScaryM0nster no it doesn’t seem to improve if we go away or of he stays elsewhere for a couple of days not that we do this often.

@Thisbastardcomputer You aren’t the first poster to mention this drug, along with others mentioned I have had a look at the info on these on the Eczema website and have added it to a list of things to discuss at the dermatology appointment.

@Pearl97 His bloods haven’t been checked in specific relation to this but has had bloods done not too long ago for other issues, no concerns were raised about them. My sister mentioned she had heard of B12 being helpful, I put him on high quality multivitamins specifically aimed at teenage boys that include all the B’s and D plus Omega 3 which haven’t really helped, I will look into the shots. He does get some improvement in the summer so I think the Phototherapy could be a good option for him and its something I’m definitely going to ask about. With regards to what we would like to be offered I think Phototherapy would be worth trying, I’ve also looked at the Dupixent that someone mentioned above and that seems like something that could be a good fit, be highly beneficial and with limited side effects, however I am aware from the Eczema UK website that they often won’t prescribe this unless immuno-suppressants haven’t worked, some of which have quite scary looking potential side effects so I think this is something to discuss. I think patch testing would also be worth while to try rule out any triggers such as ingredients in creams and shampoos etc.

@lunaemma I can’t remember what the Dr said the heat thing was called, I’ve googled the name you’ve given and it seems to specifically refer to the presence of hives or bumps on the skin like heat rash or prickly heat so I don’t think its that. Getting hot makes him itchy, generally things like hot baths or showers are a trigger and prior to developing eczema was mostly just on his hands and feet and usually subsided within about 15-20 minutes but there is no presence of hives or bumps or anything, he now sticks to cool / cold showers to avoid heat exacerbating it and has his bedroom window open all year round to keep his room cool. I have the same issue that if I get too hot I get really itchy legs and can end up scratching them to bits but I don’t have any outward symptoms such as hives or rash either, it often affects me at night if I get too warm in bed. We were told its quite common. Googling the closest thing I can find description wise is Aquagenic Puritus but that also doesn’t fully fit as its only heat (hot water or generally being hot) that triggers it rather than it being triggered by water itself but its the closest symptom description I can find.

In regards to a replacement appointment, I called again today and the lady I spoke to first thing this morning was much more helpful than the lady on Thursday, she had no issue finding my sons records and she explained the appointment was cancelled due to the appointed Dr being off sick. I explained the polava we’ve had trying to get this appointment, the length of time waiting and how devastating this cancellation was and explained that my sons GCSEs are due to start soon and I was worried a randomly designated appointment would end up clashing with exams, she said she would send an urgent request asking the relevant people to call me to book an appointment direct asap stating it needed to be agreed to avoid exam clashes. It has been an issue when trying to sort much of this because with him recently having turned 16 they now class him as an adult and generally refuse to talk to me (which given in no other walks of everyday life is he considered and adult - its nuts, its not like I’m asking for his personal medical details I’m just trying to book/rebook an appointment!), anyway PALs called my son and gained his consent for them and the hospital to deal with me. The person who called me this afternoon to arrange the appointment was frankly quite rude, and huffed at me that at 16 he is classed as an adult and as such he should be sorting this out himself!! Anyway on the bright side we now have a new appointment. Its just over 2 weeks away and on a Saturday at a different hospital to the original appointment but no need to miss any school for it which is good. Its a different hospital and she didn’t disclose who we are seeing but hopefully they will be ok.