‘He has to have a life, we have to take that risk’: children living with extreme allergies

Until recently, Elian could only eat six different foods. Eggs, dairy, nuts or lentils could kill him – and he’s far from alone. What’s behind the explosion in childhood allergies?

Elian

Elian, three, is allergic to eggs, dairy, nuts, peas, lentils, beans, leeks, lamb, turkey, garlic, chickpeas, sesame, rice, oats, barley, cats, horses, dogs and antibiotics. Photograph: David Yeo for the Guardian

Kristina Valeix is cooking dinner for her children in the bright, open-plan kitchen of their flat in south London. Every meal she makes calls for meticulous planning and attention to detail. The steamer must be stacked in the right order so foods can’t contaminate each other. The milk must be put back on the correct shelf of the fridge. Her husband fried an egg the other day, and Kristina will never use that frying pan again. Until recently, she fed her youngest son only six foods.

Kristina doesn’t have an anxiety disorder; she says she isn’t an over-accommodating mother catering to a fussy, spoiled child. Elian, three, would love to be able to eat the meals she serves to Maxim, eight, and Bella, four, but his allergies are so serious that those meals could kill him.

“I know some people think I’m a hypochondriac, or that I’m just being overprotective,” Kristina tells me as she peels potatoes, “but he could die because we’re being careless.” A few metres away, Elian is lying on the floor of the living room with his big sister, pushing his Thomas trains, oblivious to the dangers that could lie in his supper.

Ask what Elian is allergic to and Kristina takes a deep breath: eggs, dairy, nuts, peas, lentils, beans, leeks, lamb, turkey, garlic, chickpeas, sesame, rice, oats, barley, cats, horses, dogs, antibiotics… “It’s probably easier for me to tell you what he can have,” she smiles. “He can have the root vegetables – carrots, sweet potatoes, potatoes – but not all of them. We tried parsnip and whooom!” She splays her hands around her face. “That didn’t work. But he can also have tuna, salmon and chicken. And cod, now,” she adds, gratefully.

Elian’s serious reactions start with vomiting, then red blotches appear on his face and begin to spread all over his body. “They itch like crazy. His tongue starts coming out. Then he’ll get floppy and say, ‘Mummy, I’m really tired.’” If it gets to that point, it’s anaphylaxis. Elian has six EpiPens with adrenaline that could save his life, and he takes antihistamine every morning and evening. Kristina’s vigilance means the most frightening reactions are very rare, but she worries that no one takes Elian’s allergies as seriously as she does. “When he has bad reactions, I take pictures and circulate them to the family, as evidence,” she says. “It’s probably my own insecurity. It’s just so isolating.”

But Kristina is anything but alone. In the past decade, allergic conditions (including eczema, hay fever and asthma) have increased fivefold in the UK, according to the Anaphylaxis Campaign. At least 6% of children born in Britain today will develop a food allergy, and the campaign is calling for EpiPens to be made available in every British state school. In every year since the 1990s, there has been a worrying surge in childhood food allergies, with the UK near the top of the league tables worldwide. Many believe there is something about how we live now, in Britain, that is fuelling this sudden increase.

Sceptics, on the other hand, argue that the numbers have been distorted by the worried well, and by precious parents with food phobias who want their children on special diets. Over the same period, there has been a corresponding explosion in more nebulous food intolerances and the idea that certain foods, such as wheat and dairy, should be avoided. Intolerances cause digestive problems several hours after eating, whereas allergies are immediate immune responses: the body treats a harmless substance as a threat and overreacts with potentially fatal consequences. But instead of finding the sympathy that other chronic and life-threatening childhood conditions receive, allergies are often met with cynicism and sometimes outright dismissal: they are “first-world problems”.

If it is true that educated, well-off families are often better represented in allergy clinics, this may be because parents have to lobby hard to get a referral to a specialist. There are fewer than 40 paediatric allergists in the UK, and children often have to wait months to be tested at an NHS clinic. Outside London, provision is very poor. NHS hospitals in England dealt with 20,320 admissions for allergies and allergic reactions between February 2013 and February 2014, and most of those were emergencies. Allergies kill 20 people a year, and the Anaphylaxis Campaign thinks many more allergic deaths are being misrecorded as asthma attacks or heart failure.

For the families living with a severely allergic child, managing it is a daily struggle. How do you feed a toddler who can tolerate only six foods: potato, sweet potato, courgette, chicken, tuna and banana? “I Googled everything,” Kristina says, climbing up to reach a cupboard next to the fridge. “I found this on Amazon: sweet potato flour from the Caribbean, and potato-based powdered milk from the States.” Every morning, she’d bake Elian special bread using mashed banana and potato starch. “I wanted something to fill him up, and that did it. It was like cement.

“I bought every device. If you look around the kitchen, up there is a dryer for drying out banana pieces so they have a different consistency. Over there’s a fat-free fryer, because he couldn’t have any oil. I had a special machine that could turn frozen bananas into sorbet.” When visiting family in Belgium, France and Germany, Kristina came prepared. “I took all the gear, I cooked every single day. It was crazy.”

Then there’s Elian’s skin. He has steroid creams for his severe eczema, specially mixed for him by the local hospital, and the shelves in the bathroom are stacked high with emollient creams that his mother slathers on him several times a day. She constantly monitors the temperature of the children’s bedroom and ensures their bath water isn’t too warm so it doesn’t inflame Elian’s skin, though it’s always too cold for Bella. She brings towels and bed linen for him whenever they stay away from home, washing them herself with soap-free cleanser.

Kristina breastfed Elian until he was two and a quarter, to give him a decent chance of being nourished, restricting her own diet so he could tolerate her milk. “When his teeth came through, he bit proper, big, bleeding holes around my nipples. Then I got mastitis and I couldn’t take any antibiotics because he’d react to it through my milk. It went on for ever. I used to cry and scream while he fed. I couldn’t see any way out of the quagmire.”

Gradually, Elian was able to tolerate small quantities of soya milk, oil and wheat. “Suddenly, he could have pasta. And I could fry things for him.” Kristina beams. “That was like heaven.”

Managing Elian’s allergies is still a full-time job; Kristina often has to look after the three children on her own because her husband’s work, in advertising, keeps him regularly abroad. “We can keep him at home under wraps or we can give him a life,” she says. “He has to have a life, we have to take that risk. But if he died in someone else’s care, it would be my fault. I would see it that way.”

Elian’s allergies are extreme, but in many ways he is typical. There’s a family history of asthma, eczema and food allergies. Boys are more likely to suffer allergies than girls, and there is some evidence to suggest that babies born during winter, as he was, are more prone. Caesarean babies such as Elian are often over-represented in the statistics, too. So if there are patterns, can we explain why there’s been such an explosion in food allergies over the past two decades?

Unfortunately not, says Dr Adam Fox, consultant paediatric allergist at Guy’s and St Thomas’s hospital. “Some of it is probably around our changing environment with regards to infections. There’s also a large genetic component in there. There are other important factors such as age of weaning, the food we’ve got in our home environment, and the amount of eczema that’s around. It seems to have been a perfect storm of a number of different factors coming together that has led to this remarkable change in disease pattern in a relatively short period of time.”

The best known explanation, the hygiene hypothesis, says we’ve become too clean: born into sterile environments and growing up in dirt-free homes with safe drinking water, our children aren’t exposed to the harmless microbes and parasites that help develop a properly regulated immune system that won’t overreact to harmless substances.

It makes intuitive sense, Fox says, “but the evidence has not been in any way consistent about this”. If hygiene accounted for the allergy epidemic, he says, then the youngest children in a family, such as Elian, would be the most exposed to bugs brought into the home by their elder siblings, and the least likely to have allergies, which isn’t always the case. Plus, countries such as Switzerland, famed for their hygiene standards, would be top of the allergy league tables, which they aren’t.

There’s also the vitamin D hypothesis: we’ve become afraid of the sun and live sedentary lives indoors in colder climates, so we’re deficient in vitamin D. Again, the evidence isn’t conclusive, and both very high and very low levels of vitamin D have been associated with increased allergy. “A lot of theories have entered urban mythology, but when you examine the evidence behind them, it’s not convincing,” Fox says.

Bacteria influence our digestive systems as well as our immunity. “Children with allergies seem to have a different make up of gut bacteria from children who don’t,” Fox says. “There’s a suggestion that what’s in your gut can be influenced by very early life events – you’ve got to get in very early, or you’ve missed the boat – things like whether you’re born in hospital, whether you’re a Caesarean. You pick up gut flora on your way out through the birth canal. Being born Caesarean means you miss out on a lot of that.”

Fox is involved in a study in which babies with serious milk allergies are given hypoallergenic formula with added probiotics to see if they grow out of their allergies faster. But probiotics are fraught with controversy. “We don’t really have enough evidence for the effects of probiotics on anything,” Fox says. “There are literally thousands of them. Which strain would you use? When would you give it? How much would you give, and how long for?” And even if they do find useful results, the most interesting strains are owned by corporations that control their use.

The science of allergies is still relatively young. “We don’t have the legacy of hundreds of years of understanding the basics and the natural history that other specialties do,” Fox says. “This is still the ‘wild west’ to a degree.” That leaves the field open to exploitation from those eager to cash in on an expanding market. Google “allergies”, and you’ll be met with offers of antibody analysis, hair-strand tests, tests to measure electrical conductivity in the body, as well as numerous solutions ranging from homeopathy to ionising machines that emit charged particles into the air. Many of these, Fox says, “are very much pseudo-science, very easy to get hold of and deeply tempting. Even if you’ve got quite severe allergies, your chances of seeing a specialist are very remote, which means that you’re far more liable to be open to these messages.”

[Source:- The Gurdian]