Fucibet, Clobevate, hydrocortisone creams and gels, Daktacort, Epaderm, Elocon, E45, Dermol, Eumovate, calamine lotion, Pinetarsol solution, antihistamines, Piriton, Ucerax, wet wraps, dry wraps, cradle cap shampoo, all kinds of moisturisers, topical steroids, topical antibiotics, Prednisolone oral steroid, Elidel… GPs, dermatologists and consultants all offered their own variation on this list. Chekhov said, “When many solutions are offered, it means the problem is unsolvable,” and that’s how it felt for a very long time with our four-year-old daughter, who has had severe eczema since she was three months old.
I’m not talking about some patches under her knees or on her wrists or arms, she was covered from head to toe in blistered, angry, weeping skin that she would scratch all day long. She never slept through the night. Not once. She would scratch so hard that her skin would bleed, which would make the application of cream all the more painful for her and her skin more exposed to infection – and so the cycle would continue. It was worse at night when she would thrash around, crying inconsolably, frustrated by the scratch mitts (graduating to the longer ones that cover the whole arm and fit under the clothes so she couldn’t remove it and scratch), until she finally subsided beneath a wave of sedating antihistamines for a few blissful hours – for her and us.
Each morning was an endless go-round of washing blood-stained sheets, clothing and pillow cases and then fitting fresh sheets and pillow cases and duvet covers. Each day making sure her nails were clipped so they were as short as possible. A doctor friend once told me: “If your children study medicine, tell them to pick dermatology. No one dies; when it works, people are ecstatic because they look better and feel better; and if it doesn’t, there’s always something else to try.”
No one dies (well, extremely rarely), but for us it was a waking nightmare. The sleep deprivation was utterly exhausting. We would put her to bed at the end of a long day knowing that an equally long night was just about to begin. I would often grimly think of The Simpsons episode where Homer creeps home to his bed in the early hours after working a night-shift on top of his regular day job and as soon as his head hits the pillow, his alarm wakes him. My girlfriend and I barely went out on our own, not wanting to leave her with someone who wouldn’t be able to comfort her. Our life was Groundhog Day without the moral redemption. Or the funny bits.
When we look at baby photos of her years later, we see how truly awful it was. That she was and still is a sweet, loving, energetic child who never complained all that much is heartbreaking. When her language skills improved enough to tell us how it felt, we were mortified, guilt-ridden. Her elder siblings have all had eczema flare-ups at some stage, but never from head to toe in such excruciating discomfort and a short blast of steroids or antibacterials would usually do the trick. But nothing would work for very long with our youngest.
But then my girlfriend, searching online discussion groups, started to hear about Dr Richard Aron, 78, a South African consultant dermatologist who used to practise in the UK. He was getting fantastic results with online consultations using the same creams we’d been using, but in a different way. He’d been working like this since 2008 and had been treating patients mainly in the US, UK, Australia and New Zealand. The standard approach in the UK is to use a steroid or antibiotic cream intensively on the affected area for a few weeks, then stop for the skin to recover and repeat when it flares up. Which works for lots of people, but not our youngest and not for thousands like her.
Aron’s treatment uses those same steroids, antibiotics and moisturising creams and compounds them together. He then tailors the frequency of application and amount of each constituent according to the age and weight of the child and severity of the eczema and other factors. He uses significantly diluted steroids and antibiotics for longer periods instead of short blasts. Most of his patients use his therapy for a minimum of six months.
His theory is that in the vast majority of cases, atopic dermatitis is mediated by a bacterium called Staphylococcus aureus. “The key issue in atopic eczema patients that are referred to me is the presence of Staph aureus infection,” he says, which his regimen deals with by including an antibiotic element. “The dramatic improvement in many of my patients is due to killing the bacteria.” There is evidence from studies that 90% of atopic dermatitis patients are colonised with this bacteria on their skin – most healthy people do not have it.
We covered her in the mixture six times on the very first day as directed and couldn’t believe what we were witnessing. We could finally see her normal skin for the first time. That very night, she slept through for the first time in her life. The relief was immense. The next day her skin was about 80% normal-looking. This time, it was my girlfriend and me who wanted to sob uncontrollably. Why hadn’t we heard about this treatment earlier? Why hasn’t everyone with severe eczema heard of it?
As I’ve discovered, the NHS isn’t supportive of Aron’s approach, mainly because his regimen doesn’t follow the Nice guidelines on eczema treatment and the (albeit considerable) anecdotal evidence is yet to be thoroughly tested. Because our GP and hospital won’t prescribe the creams for us to mix (though some GPs will), rather than pay the £45 repeat fee from Aron each time we need a new pot, we import it ourselves from a friend abroad where it’s cheaply available over the counter and compound it ourselves – a friendly pharmacist showed us how to mix it safely and effectively and there is advice on Aron’s Facebook page too. There are reasons to be concerned about antibacterial resistance through the prolonged use of an antibiotic. Resistance is possible, but the benefits outweigh the risk, according to Aron. Another concern is the long-term use of topical corticosteroids and the risk of side effects – possible thinning of the skin, skin discolouration, stretch marks and dilated blood vessels. But the steroid in his method is significantly diluted in the moisturiser and has less chance of causing side effects, he says.
I met Aron in London in June the day before he was due to meet 50 of his UK patients who wanted to thank him in person. I wanted to thank him too. Aron is neat, compact and personable and understands the torment families go through. “It’s hell – the constant sleep disturbance, the itch and discomfort that prevents children from studying at school, bullying, social exclusion, the psychogenic pain suffered by the parents who feel guilty for not being able to relive the suffering – the effects are underestimated by medical practitioners.” He admits there are very many patients for whom conventional therapy works, “But equally there are a very large number of patients who don’t get better or who get better in the short term and relapse and keep relapsing.”
So what of the future? “The single most important work being done in eczema these days is by Professor Richard Gallo at the University of California in San Diego on the microbiome.” Gallo discovered that our skin microbiome produces a natural antibiotic – antimicrobial peptides (AMPs) – that kill off Staph aureas. He also found that the skin microbiome in people with atopic dermatitis does not produce enough of these AMPs, leaving them at greater risk of infection.
Aron’s regime has finally got the go-ahead for a randomised trial comparing it with conventional treatment at the Red Cross hospital in Cape Town. The objective is to see what role the antibiotic element of the compound plays. Unfortunately, Aron uses the analogy of how well Germany are doing at football (I met him before the World Cup and Germany’s worst performance since 1938) to explain his success, but the point remains: “As the Germany manager, Joachim Löw, said, ‘There is no magic formula, it’s just doing the basic things much better than anybody else.’ The treatment I do is not magic, and it’s not a miracle as many people want.”
Not a miracle, but like Bill Murray’s character in Groundhog Day, when his seemingly eternal ordeal was over, and he finally awoke to a new day, we also feel like shouting: “Do you know what today is? Today is tomorrow. It happened.”
