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?

My sympathies with your son, I have psoriasis and eczema so I literally feel his pain. And I have had the joy of pustular psoriasis causing a bald patch and pus running down my face so I know how distressing it can be.

What do you use to wash his sheets? I had a housemate who couldn't use biological washing powder as he had an allergy.

What are his sheets made of? I know you said he sleeps in PJs but PJ tops often move around in the night.

How old are his pillows and are they feather?

Does he take a multivitamin? As his diet is so limited it might be an idea just to make sure he's getting everything vitamin wise that he needs.

It is possible that he's reacting to water, it's very rare. Instead of a shower could he use wet wipes for a week? Not the same week as the steroids.

Some very good point about laundry detergents. I would avoid softener. The less chemicals he comes in contact with, the better.

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?

Not in my experience. When my skin is suffering I find that washing less helps.

If there is a moisturiser that he tolerates, he could try washing just pits, bits and feet with soap, and 'cleansing' everything with just moisturiser: generous smear of moisturiser all over, then wipe it all off with several clean facecloths.

I can highly recommend washing his clothes and bedding in Liquid Soap Flakes, without using any conditioner or other treatments. It's extremely bland and gentle. It will take several washes, however, to rid fabric of irritating residues.

The trouble with trying lots of things is that none of them are ever quick fixes. Apart from steroids! You need to give every trial several weeks at least for the skin to start responding. It's a pain

Beautiful boy, BTW, gorgeous eyes.

Defenbaker yes it is his dominant hand. He had allergy testing years ago. Cats was ok. He did have a slight reaction to dogs. At the time we had two dogs, a big lab, who shed like mad and a yorkie. Lab passed away, still have yorkie. They said as we had always had dogs and he had never had a severe reaction to them, the slight response wasn’t a problem.

So it’s a possibility. I hope not. He is a real animal lover. The dog is his best friend! He would be devastated.

Silkie2 he has had therapy from CAMHS, they concluded his anxiety is school related, due to his ASD. He attends a special school with school counsellor on site and can access this at any time. He chooses not to, doesn’t find it helpful. He has an EHCP and lots of things in place.

sashh I wash his bedding in bio and use softener. Sheets are cotton. His pilliows are newish, about 18 months old, I use pillow protectors. 3 pillows are feather, the one under his head is memory foam. Although he sleeps on his scatter cushions! There are some changes I could make there, washing powder, anti allergy pillows etc.

He takes an over counter vits. Dietician did prescribe a powder, which you mix with water. He wouldn’t drink it, couldn’t tolerate the taste.

He is very sensory, he says water hurts his skin. More the sensation I think, as oppose to the actual water. Another thing to consider though.

Jelly he hates having moisturiser on his skin. He won’t use soap of any kind, he doesn’t like the feel of it. If he needs moisturiser, I can insist, but it will drive him mad, he wants to wipe it off. Which could tie in with your idea!

Thank you, he is a truly beautiful boy, inside and out! The kindest, gentle little soul

I'm rooting for you and your boy OP

Would he bath instead of shower? A shower could be sensory overload - constant noise, drumming, movement. A bath could be slower-paced, quieter. He would be in control of where the water went and when. Then you could load the water with emollients, or, at the very least an oats sock.

Did he has a sore throat in the couple of weeks before the rash started? It could be acute guttate psoriasis, this is an acute, widespread type of psoriosis that starts in one part of the body and spreads, it causes itchy, dry, raw flaky skin and looks quite like eczema, but where it doesn't cover you see distinct patches . This is an auto immune response to Streph A bacteria. Steroids temporarily dampen it down, but it tends to clear up after a few months on it's own or UV treatment (specialist not-sun-beds). Has he seen a dermatologist?

Thanks Amore

jelly he prefers to shower. There is something about submerging his body in water, that he doesn’t like. (He doesn’t like swimming either!) he says bath water, makes him itch, you know that feeling when you splash water on your skin and it starts to dry? So sitting in the bath and you wet your shoulders, and they air dry a bit, while you sit there? He says it feels like spiders crawling on him! He doesn’t get that feeling with a shower, as it’s constant wetness, if that makes sense!

mushroom he might have had. At the time, I had the worse case of flu, I have ever had (you know the can’t get out of bed type) and I was worrying I would not be better for Christmas. Before I became ill, he had a much milder form of ‘flu like’ symptoms and we joked, he had given it me.

Hospital have made an urgent referral to Dermatologist.

Do mention that he had flu-like symptoms before he got the rash when you see the dermatologist. Good luck with sorting this out. His face looks so sore!

Dd had something similar. Not as widespread but really red and sore on her face. She tried steroid cream which made it less red for a day or so bit worse generally. Gp prescribed Zineryt lotion and we used that and eucerin atopic cream and it went after two weeks. Got worse for a few days !

Hope you get some answers. And a small thing in the big picture perhaps but 4.77 for TSH is not within normal bounds. Ideally it would be under 2. Worth getting more tests on that element although it may well be irrelevant to the skin issue.

I went to GP today and got a copy of blood test results from October. Paed says everything fine, apart from Vit D.

I’m not an expert! To me it reads Ferritin is not within normal limits and Creatinine is also lower than normal. Automated EOS count is higher than normal range.

Any expert blood test results readers?

Sorry just to say be careful of overusing steroid creams especially on the face, google topical steroid withdrawal, it can make the skin worse afterwards. But sometimes they do help so it’s difficult. Hope your son gets better soon.

Also these comments on blood test.

So under ‘comments for ferritin’ it clearly states ‘clinical review recommended’

‘Comments for T4 - falsely high results may be observed in patients on biotin therapy or ingesting biotin supplements. I’m not sure what this means?

‘Comments on vit d’ ds clearly has Vit D insufficiency. Not a ‘bit on the low side’!

Why has paed said all results are fine, in his covering letter?

Google tells me (had to google, didn’t know what creatinine was)

“Who has low or high blood creatinine levels?

Muscular young or middle-aged adults may have more creatinine in their blood than the norm for the general population.
Elderly persons may have less creatinine in their blood than the norm. Infants have normal levels of about 0.2 or more, depending on their muscle development.

In people with malnutrition, severe weight loss, and long standing illnesses, the muscle mass tends to diminish over time and, therefore, their creatinine level may be lower than expected for their age.

OP, you said "I wash his bedding in bio and use softener. Sheets are cotton. His pilliows are newish, about 18 months old, I use pillow protectors. 3 pillows are feather, the one under his head is memory foam. Although he sleeps on his scatter cushions! There are some changes I could make there, washing powder, anti allergy pillows etc."

Biological washing power/liquid is notorious for causing skin problems - suggest a hot wash in plain water asap. Drop the softener - probably smells lovely but full of chemicals/perfume that can cause reactions. Just not worth the risk.

Pet allergies - I've also responded badly to lab/retriever dogs, but less so to certain other breeds. It's possible that although he didn't react to cat allergen in the previous tests a couple of years back, he could have become allergic to them since then, because allergies can appear or worsen overnight, literally. Please minimise contact with the pets. Also - do the pets ever sleep on those scatter cushions that he likes to sleep on? When were those covers last washed (maybe not often or perhaps never, if they don't have zipped/washable covers)? Not being judgemental re your house cleaning OP, just trying to track down some likely factors. How much pet dander/house dust mites/bacteria do you think might be lurking on those scatter cushions? (Bear in mind pet allergen is contained in the dried saliva of animals, not the fur, that's not allergenic in itself. You could hoover those cushions but still have fragments of the saliva in the fabric.)

Sorry if I'm nagging you, but avoidance of allergens is second nature to me after years of bad reactions, and your boy needs all the help he can get. For people who don't have allergies, there is so many thoughts that just don't occur to them, but jump out to me like red flags. Good luck OP, I know it's hard, but I think there are probably many factors at play and you need to examine his lifestyle and environment thoroughly to track down possible triggers.

@Claw001

Just a comment on b12 and iron,
Iron and vitamin B12 work together in the same way calcium and vitamin D work together. Vitamin b12 help raise the level of iron, so low vit b12 means that less cell division, especially those that die rapidly and change frequently such as red blood cells On the lab result you posted his b12 is super low even if within range. However, as for vit D, the way labs measure b12 is under revision because many b12 deficiencies go unnoticed on blood results.
Because b12 is very safe and any excess is eliminated with urine, I would buy 1000ug b12 and alternate between co-methylcobalamin and cyanocobalamin . They are very cheap

Most multivitamins are very very low levels of most vitamins because often they are taken by people with no deficiencies, and so they need to stay safe. Vit b12 in multivitamin is usually between 60-100ug far from the 1000ug.

Hi, I think you've had lots of really good advice here, so I won't go into what works and doesn't for my very severe eczema, but a quick note on antihistamines if that would be useful.

For the itching, I've found one that really really works for me, and it's Benadryl Acrivastine, the one you can take 3 times a day. Acrivastine comes in no other form, there is no generic option, I take 2 a day religiously, and pop more if I can feel the tingling itch starting, esp in the middle of the night.

They take about 20 mins to kick in and really work. I have tried EVERY antihistamine and this is the only one that comes close to touching the itch.

Breaking that itch/scratch cycle can sometimes go a long way to helping other treatments to work.

Good luck with it all, I really feel for him, it can be horribly depressing I know, especially when it's your face.

I second @MiniMum97 re tropics products. I also sell it so if you need further info pm me

Intolerance tests are a must.

My sis was prescribed a cream for an eye irritation which contained the ingredient that she was intolerant of so a vicious cycle of it getting slightly better then worse than ever.

*Intolerance/allergy testing

I cleared my eczema (sever atopic late onset) by a prescribed dose of high quantity vitamin d. I had been on immunosuppressants, steroids, every cream going and nothing worked. I got sunburnt (I know) and for a day my eczema cleared a bit. I did a load of research and asked my consultant she said she's never prescribed by someone hadn't been deficient just low levels but would give it a go and within a week it was better and within a month it was gone completely, I had it covering 90% of my body.

Total sense, Claw.

Defen you are not nagging! I appreciate your comments! I am taking note of any changes I can make.

Scatter cushions are zipped and I wash them as often as the bedding, as he sleeps on them, rather than the pillows. Pets never go on his bed or even in his room. He is very protective of his room, everything is very ordered, tidy, lined up etc in there. I’m not even allowed in there! Without permission! Even then I get hurried out!

I’m really hoping it is not pet related, his pets are his life. Animals are his obsession. They are more like therapy pets, they lift his spirits and keep him going on bad days. If we had to rehome them, he would be absolutely devastated.

King years ago ds had a blood test and GP told me all fine. We saw a Dietitian a few months later, who looked at the same results and told me ds was severely anaemic, based on Ferritin levels. She said GP’s often mistakenly look at Haemoglobin levels. I have emailed the most recent Dietician who saw ds, she was lovely and very helpful. I’ve attached results and asked if she could please offer and advice. Ds is discharged from the service, fingers crossed she might reply.

Thank you all again, for your helpful suggestions and recommendations. I’m taking note.

Hi OP

I had exactly the same thing. Luckily I had private healthcare or I'd have never gotten to the bottom of it.

At first they thought it was lupus, so I had blood tests for it and even a skin biopsy. Results were negative.

Then I was referred to a skin consultant who did a full allergy test. Turns out I was allergic to disodium EDTA (take a look it's in absolutely everything- it's a preservative in mainstream and premium skincare, bath and shampoo products - even mayonnaise!!). Also allergic to anything less pure than 18 carat gold

Anyhow, all of this just suddenly happened. Had never been allergic before. Sometimes your body just decides it doesn't like something and reacts.

Steroid cream, emollients and anti fungals are the only things that help but I'm not very careful with what I put on my face. (Ps the rest of my body doesn't react as violently to the same triggers)