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?

Try dream cream from lush
No chemicals and very soothing

Try oat oil to stop the itching. Instsnt relief! It's not enough to treat the eczema, you'll need creams too but it really does help the itching. Another vote for aveeno too, and I find hemp oil effective too, rubbed in sparingly on top of aveeno straight after a shower.

Beware of coconut oil as I find it inflames mine, but I know people have success with it.

@Claw001 I have done a little research for you on pubmed the online medical library www.ncbi.nlm.nih.gov/pubmed and in the most recent articles for severe atypical dermatitis there is a study on this drug .
Here is the abstract for the article www.ncbi.nlm.nih.gov/pubmed/30719707 and the whole manuscript sci-hub.tw/10.1111/bjd.17703 . I have found an article
www.acsh.org/news/2018/05/24/dupilumab-miracle-drug-eczema-and-now-asthma-too-12999 but before you jump you might want to read the wikipedia page . en.wikipedia.org/wiki/Dupilumab

The commercial name is Dupixent and it seems covered by the NHS www.pharmatimes.com/news/sanofis_dupixent_approved_for_routine_nhs_use_1241504

It might be worth having your GP looking into it.

I am fuming this morning.

I did some research. The ‘Dermatologist’ we saw yesterday, was NOT a Dermatologist. He was GP with a ‘special interest in skin’. So exactly the same as my GP who has been trying, unsuccessfully to get this under control December.

He applied two different branded eczema moisturisers to my ds’s face (one either side) despite me telling him, my ds had previously had a severe reaction to eczema moisturiser.

This morning, my ds’s eyes are almost swollen shut.

Who do I complain to? I’ve emailed my GP’s surgery complaining.

His skin has not improved much and now his eyes are swollen too.

Call you local private hospital and book in to see a private dermatologist with an interest in immunology and get this sorted in one shot. You’re looking at about £150.

Take pictures. If you can, take your son to the GP this morning and ask for an urgent referral to either a real dermatologist or an immunologist, because it is far more than classes eczema.

Urgent referral is not limited to cancer or life-threatening diseases according to www.gponline.com/urgent-referrals-dermatology/dermatology/miscellaneous-disorders/article/1385043 ''These include life-threatening conditions, but also common dermatoses, such as eczema and psoriasis, when normal function and quality of life are affected. "

Your son has been missing quite a lot of school if I recall correctly, quality of life is seriously affected and pain is increasing. He cannot function normally any longer and this has been going on for two long.

Thank you. We ended up in A&E. The Dr we saw was lovely, she said it was out of her experience and got a consultant. He said it is not your typical eczema and it doesn’t follow, fit or look like usual eczema pattern.

He made an urgent referral to hospital based Dermatologist and said I will hear from them in a few days. If I haven’t, he gave me the number to phone. He has prescribed 40mg prednisone for 5 days, just to give ds some relief from the symptoms in the meantime.

He also said Dermatologist will take some scraping of skin to give a clearer picture of what it is.

The swelling has gone down on ds’s face already. We both feel relieved to finally to be getting some help!

Thank you everyone for your advice and support ❤️

I know you've probably got further down track than this - but just to add two 'face irritantation' experiences I've had over the years in case any help. Both were pillowcase related

First was me - turned out to be due to shampoo containing grapefruit oil. Did not make my hair itch, but sleeping on hair & transfer from hair to pillowcase to skin resulted in swollen and itchy face to extent that I was drawing blood scratching at night.

Second was my DS1. I started putting zoflora in washing (thanks mumsnet...) - only maybe half a capful in full load of washung. Sheets smelled great. But by a few weeks later DS1 was covered in a rough rash across torso, shoulders & coming in to cheeks. Also starting to scab from night time scratching. Took a while to work out as there was a delay in the reaction getting so bad. Once zoflora stopped, it calmed down within a week.

I am sorry it took a trip to A&E to finally be taken seriously but what a relief!
Take pictures and possibly print them.
Now sit down, have a cup of tea or a tumbler of gin and watch some stupid serie on Netflix!

Keep us updated!

A&E is quite a distressing experience for ds. The noise in children’s dept, lots of toddlers, bright lights and huge anxiety, 4 and half hours worth, was quite overwhelming. He had his head in my lap, rocking, hands over ears.

I have to say the staff were amazing! They allowed us to leave and go and sit in a quiet part of the hospital, walk about outside etc. They took my mobile number and phoned me to go back, when his name was called!

Ds has had McDonald chips (his favourite chips!) for how well he coped!

Do you think I should officially complain about the service we had received prior? I emailed my GP about the useless referral, time wasted and the impact ie ds missing lots of school, not leaving the house, anxiety. Furthermore my GP refused to prescribe the steroid tablets, that ‘non dermatologist’ the day before recommended for 48 hours. Leaving ds without any treatment for 48 hours.

GP Secretary phoned and said not their fault. They asked for referral to ‘dermatology service’. It was the referral management and booking team who took it upon themselves to refer to inappropriate service.

No I don’t think you should complain.
Hope your boy is better soon

“I wish to complain about the referral service, we have received. Dr X requested a referral be made to a Dermatologist as did out hours GP. After Ds was seen 6 times at the surgery since December and his skin condition particularly on his face cannot be controlled with steroid tablets, steroid creams, antibiotics, anti allergy tablets and he has had an allergic reaction to eczema moisturisers. It has resulted in ds not being able to attend school, for 4 weeks, due to the severity of his skin, since 7th January.

Also impacting on his independence and confidence, too self conscious to leave the house at all, increasing his already high anxiety and not being able to sleep at night due to the itching and anxiety.

Yesterday we attended, what I initially thought was an appointment with a Dermatologist. However, it was at Xxxx Health Centre, with an ‘intermediate Dermatology service’ ie a GP with a ‘special interest in skin’. So, exactly the same as Dr X, who made the referral in the first instance.

The GP we saw there, has requested that my GP prescribe exactly the same thing, that Dr X and other GP’s have already tried several times, unsuccessfully ie steroid tablets, anti allergy meds and eczema moisturiser.

Furthermore, this GP stated that I was definitely not to use anymore steroid cream on ds’s face. When I handed in the medication advice form yesterday morning to the surgery, for steroid tablets etc. I was told I would have to wait 48 hours. Leaving ds without any prescribed treatment until Saturday.

The different brand eczema moisturiser, was applied by the GP himself yesterday, despite me telling him ds previously had an severe allergic reaction and showing him photos. By this morning, ds’s face has swollen dramatically and his eyes are swollen, almost shut.

Attached a picture from this morning. His skin while being treated with steroid cream, anti allergy tablets, and antibiotics for weeks (it hasn’t cleared) and moisturiser GP applied, he has had a reaction to.

Please advise urgently, as to who I have to complain to, to get this treated as a matter of urgency?“

This is the email I sent this morning, after being refused an appointment from GP surgery this morning. GP Secretary phoned and her only advice was ‘not our fault’! So I took my ds to A&E!

Poor boy. Hope you get some results soon.

Nothing to add, but poor lad, that looks so sore, sending unmumsnetty hugs

Does he by any chance wear pj bottoms in bed leaving the bits that are reacting exposed? If so it could be washing powder/fabric softener. Recommend zero or ecover and wash everything a few times before putting on his bed.

Personal experience and the contact of sheets caused it to flare overnight.

I have had bad flare ups of psoriasis. I found the cleansers from this company to be one of the few I could tolerate.

purenuffstuff

He wear pjs bottoms and tops to bed. His feet, legs, waist etc have nothing (no sores) just his face, upper torso and one hand.

I’m wrecking my brain trying to think of external factors, much appreciated helping me thinking this though and of possibilities.

No changes, to washing liquid, softener (although I do and always have used bio)

Ds hates showering or water touching his skin. It’s a struggle to get him to shower twice a week! Maybe that’s the problem?

Maybe it’s something I’m not doing, as oppose to something I am?

How distressing for you both. I’m no doctor but in some of your photos it looks more like acne/rosacea.

Glad you’ve been referred.

Something else, there’s a fungal skin condition, the name of which I can’t remember, and it can be treated using Nizoral shampoo/suds. Maybe someone else will know what I mean.

Skin outside A&E today and skin prior to ‘GP/dem’ visit

There is also a condition called tinea versicolour (sp?).

Aghhhh, just typed a long message which system deleted as I tried to post it!!!! 😠 Anyway, short version:
Levels of vitamin D - each country has different recommendations for what is healthy/adequate. A level that would be considered OK in the UK would be considered low by some other countries. Not sure how that might impact your son's skin but worth discussing with specialist.
Pet allergies can start at any stage in life - mine started in my teens. It's interesting that you say your son's skin problem is on the top half of his body, plus one hand. Is that one hand the dominant hand, perhaps? If so, maybe he strokes the pets before bed sometimes, then touches his face later? Facial skin is often more sensitive than skin on hands. So, the fact those pets don't go in his bedroom does not rule out pet allergy, and neither does the fact you have no carpets - the pet dander is still in the atmosphere, in the dust, the air - if he has developed a severe allergy to the pets they cannot be in the house, as that is like living with the enemy to his health.

Hurtful comments from strangers - I still struggle with handling this, after decades of practice. You could tell your son that nice people with good manners try not to say unkind things, and give him some lines to respond with, such as "my skin will heal, but you'll always be rude".
Reaction to white soft paraffin/vaseline - more common than you think (see my other post). WSF is a cheap ingredient though, so gets favoured by NHS.

It is a good thing they will scrap or do a small biopsy of the eruption your son has. Hopefully it will clarify what it is and how to best treat it.
Meanwhile have some 💐💐

Would counselling help him do you think, or would he find it stressful?
If he is suffering extra stress for some reason it could possibly reduce his resistance to things he would normally not react to.