When death could be only a mouthful of food away . . .
Parents of children with a food allergy have to find a balance between over-anxiety and complacency
The death in Dublin last month of a teenager with a peanut allergy, minutes after suffering a fatal reaction when she mistakenly ate satay sauce, was chilling news – particularly for parents of the estimated 20,000 children in Ireland with the same allergy.
Emma Sloan (14) collapsed on the street in the city centre on December 18th after going into anaphylactic shock as a result of consuming peanut sauce in a Chinese restaurant. She did not have with her a pen that is used to inject adrenaline into the thigh to counteract an allergic reaction.
Altogether, up to one in 20 children is affected at some time by a food allergy and, at the outset, it is impossible to say which of them could have life-threatening reactions.
It is the “sword of Damocles” over these people’s heads, says Prof Jonathan Hourihane, consultant paediatric allergist at Cork University Hospital (CUH). All food allergies are potentially serious and all need equivalent medical assessment.
“Half of people who die from anaphylaxis have never had a severe reaction before,” he explains. “We haven’t any way of predicting future severity.”
However, he says it’s a myth that each reaction will be worse than the last one and it is important for people to know that.
Hourihane is chairman of the Irish Food Allergy Network (IFAN) which, in the wake of Sloan’s death, said the health service was not recognising allergic disease as a priority, despite documented increases in such conditions – food allergy, asthma, eczema and hay fever – over recent decades and public demand for services.
A consultant paediatric allergist who was appointed at Our Lady’s Children’s Hospital in Crumlin, Dublin, just last November, already has a waiting list of a year, he says.
Anaphylactic incident study
IFAN is being funded by the Children’s Research Centre in Crumlin to conduct the first national study of anaphylactic incidents and Hourihane expects about 600 cases in an 18-month study of children.
A short list of foods account for about 90 per cent of food allergies: milk, egg, peanut, tree nuts, fish, shellfish, soy and wheat. Most milk and egg allergies are gone by the age of 10 but nut allergies are usually for life.
Naturally families of small children with one allergy will err on the side of caution with other foods on that list but it may be unnecessary. However, unless their child is tested, they won’t know that.
IFAN, which is a multi-professional collaboration, produced guidelines for healthcare staff around the country last year, to promote better diagnosis and management of food allergies.
Each local hospital has somebody who deals with patients with diabetes or asthma or epilepsy and an equivalent level of care and competency is needed for people with food allergies, Hourihane argues.
Paediatric cases need to be kept under review to see if the allergies have resolved or are persisting. At around age 10 a “food challenge” can be done in a hospital setting to determine this – feeding the child a small amount of the substance they have reacted to in the past.
Where the allergy persists, youngsters move into a different phase of management, says Hourihane, as they need to be taught to look after themselves and not be “stupid adolescents”.
“Teenagers are the highest risk group. They don’t tell friends; they eat things that they know they shouldn’t; they may be taking drugs or alcohol; and they are kissing strangers and hanging around with people who have no vested interest [unlike parents] in their survival.”
Janet Murphy’s 15-year-old daughter, who has a peanut allergy, carries adrenaline pens wherever she goes – she has two at home in Santry, Dublin, two at school and two in her schoolbag.
“She is very sensible – thank God,” Murphy says. If she is in a restaurant with friends, she would not eat anything unless it is a place her mother has checked out.
“She would have a lot of anxiety around food,” says Murphy. “Unfortunately, the restaurants here are so bad with allergy control – we would love to go out more.”
Murphy regards McDonald’s and Burger King as safe places for her daughter to eat – indeed Hourihane describes McDonald’s as the “safest place in the world” to eat because its food production is so rigorously controlled. The Murphys chose another American chain, TGI Fridays, for their daughter’s Confirmation – but only after her mother had gone out and interviewed the chef of the Swords outlet.
Her daughter was 14 months old when she reacted quite severely after tasting a tiny piece of peanut butter on toast.
“She immediately swelled up – got big lumpy hives on her arms and legs and started scratching straight away. Within five or 10 minutes the whites of her eyes had swollen up and she couldn’t swallow and wasn’t breathing properly.”
Murphy brought her to the GP who is only a few minutes up the road and he called an ambulance to rush her into Temple Street hospital.
Subsequent blood tests also diagnosed an egg allergy but they received no follow-up and were simply told she shouldn’t eat egg or peanuts.
It was their GP who referred them to a private consultant as “there was no one in the public system to see her”, Murphy recalls. She was rechecked every three years until the age of 10 and then referred to an asthma consultant, who has taken over her allergy care. But there is no sign of her growing out of them.
She has had a few “unknown exposures”, which were treated with antihistamine, but they have never had to use the adrenaline pen.
They don’t have eggs or nuts in the house and Murphy also has to be very careful with ointments and cosmetics, which often contain nut oil. Her daughter isn’t into make-up yet, but that is likely to be another concern very soon.
Rosemary Maher’s four-year-old son Michael was just 16 months old when he had a serious allergic reaction after tasting a little of his older sister’s pancake spread with Nutella.
“He only had a mouthful but he began to get really distressed and rubbing at his eyes.” Then she saw he was swelling up.
A pharmacology graduate, Maher twigged what it was and knew he needed antihistamine, which she had in a cupboard, and then headed straight to Tallaght hospital with him.
“He looked like the Michelin man,” she says. He was still swollen when she took him to the GP a couple of days later, who referred him to a specialist.
An allergy to hazelnut was confirmed but they were advised to stay away from all nuts, including products labelled “may contain nuts”.
“It’s so ambiguous, it’s a pain,” she says and, as such a declaration is voluntary, “we are probably eating stuff that ‘may contain nuts’ and we don’t know it.” And the bizarrest things – such as bags of carrot batons in Tesco – state they “may contain nuts”, she says.
Constant vigilance is necessary. They cook from scratch at home in Rathfarnham, Dublin, and carry two adrenaline pens with them at all times.
“The thought of him going to school just makes me break out in a cold sweat,” she says. “I have complete control of what goes in his mouth – except for when he’s in the creche and they know what to do. But when he’s down in the classroom and his friends are eating something that looks really attractive . . .”
She knows the effectiveness of a nut ban in schools depends on both the goodwill and cop-on of other parents, which is why it’s vital the wider community understands the needs of people with food allergies.
‘My heart is in my mouth every time we eat out’
The first sign that James Martin (10) is suffering an allergic reaction is when he complains his throat feels funny.
“Your blood runs cold,” says his mother, Emma. “You never know what way it is going to play out.” James doesn’t break out in hives or swell up, instead the reaction seems to be all internal.
The first step is to give him antihistamine as soon as possible and watch his breathing. He might need his inhaler to open up his chest.
“If he starts to go pale and a bit floppy, he might say he doesn’t feel well at all,” she explains. “It is hard then because you are wondering whether to use the [adrenaline] pen on him.”
The antihistamine takes about 15-20 minutes to work; then he starts to perk up, explains Emma who has never yet had to use the pen.
James has numerous allergies, ranging from dust and pollen to eggs, peanuts, hazelnuts and kiwi fruit. He was diagnosed after being referred at 10 months old by their GP to a specialist because of asthma. They were advised that he should avoid these substances but Emma says the seriousness of the situation did not really dawn on them initially.
So far his worst reactions have been with her at home in Monkstown, Co Dublin. Once she gave him a bread roll without checking the label, which stated it contained egg. Another episode was sparked when she gave him a piece of toast after handling an egg – even though she had washed her hands first.
He has also reacted to chickpeas and lentils. Emma realises now that they are the same legume family as peanuts but “nobody tells you these [things]”. She spends her days reading labels. “You get almond oil in soaps, so it’s never ending – it doesn’t just stop at food.”
Like most parents of children with food allergies, Emma tries to strike a balance between over-anxiety and complacency.
“You want them to lead a normal life and still be responsible – and that’s very hard.” However, James, an only child, is very logical and not anxious.
Inevitably it falls to the mother to do most of the worrying.
“My heart is in my mouth every time we eat out,” Emma admits.” I wasn’t always like that, I’ve just seen the reactions getting worse and it scares the life out of me. I worry about him on play dates, even though the mums are great and we agree ahead of time what he can eat.”
While other parents are very supportive, she doesn’t believe you can really understand the implications unless you have a child in a similar situation.
“To look at James,” she adds, “you’d think he is fine. But within minutes it can go horribly wrong and he could end up fighting for his life.”
The first time Deirdre Doyle’s daughter, Sarah Clark, had an allergic reaction they were in the cafe at Collins Barracks in Dublin on a summer’s afternoon in 2008. Aged nearly two, she tasted a bit of the gluten-free cake being eaten by her mother, a coeliac.
“As I was looking at her, her face started to go blotchy,” recalls Doyle. “I have never really understood the expression ‘bee-stung’ lips, but I did then. And she started scratching her tongue.”
She rang her health insurer’s helpline to ask whether she should bring her to the GP or to the children’s hospital in Crumlin but was told to ring for an ambulance immediately as it could get worse.
The ambulance was there in minutes and once inside the little girl vomited all over her mother, probably clearing it out of her system.
“That was a bit of a traumatic introduction to a food allergy, bearing in mind that I have been aware of food and ingredients my whole life, being a coeliac.”
Tests suggested that Sarah, who had some eczema as a baby, was allergic to milk and eggs as well but growing out of that and there was no need to exclude them.
However, they were told to avoid all nuts – and anything that contained nuts. But they knew she had eaten foods containing almonds and cashew nuts and when they got her retested by another specialist a few years later, he was able to say it was just peanuts she was allergic to and she could have a less restricted diet.
Sarah, now aged seven, keeps adrenaline pens at school as well as at home but Doyle admits they had become a bit lax in bringing pens with them at all times and that Emma Sloan’s death (see main article) has been a real “wake-up call”.