When everyday food is fatal
Life-threatening allergic reactions are a chilling reality for a rising number of children. This is what it’s like living with the risk of dying from your food.
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It starts with a drop of milk. A single white drip from a cereal bowl onto the arm of my toddler who is sitting on the floor below. A second after contact, the drop causes a progression of angry red hives to begin erupting up her arm. The speed of it is stunning.
Move now. Run to where her medicine is kept – the antihistamine, her EpiPen. A drop of milk, once so innocuous, is now as good as poison.
How can this be true? With no family history of food allergies, we grapple with the seriousness of this terror that now lives with us. Our first-born child, healthy in pregnancy, healthy at birth – but at three months of age her skin, from scalp to toes, becomes rough and thickened, cracked and bleeding. She is agitated, screaming constantly.
At five months we find our way to a paediatric allergist – one of only two in Queensland at the time. Here, skin prick allergy testing reveals multiple serious food allergies to all nuts, sesame seed, dairy, eggs, as well as reactions to other things like dust, grass, cat and dog.
There is an immediate and strict removal of all these food “allergens” from my diet – as I am breastfeeding her and even one nibble of a biscuit containing one of these foods will cause her days of diarrhoea and burn-like blisters on the skin of her bottom.
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At two, due to the strong likelihood she will suffer an anaphylactic reaction – where the throat can swell shut – if she ingests one of her allergens, I begin to carry an adrenalin-injecting EpiPen for her at all times. Once she would have been a child so rare she may have been written up in a medical journal. But in the early years of this century, our daughter was, unhappily, part of an alarming surge in the numbers of children with life-threatening allergies.
Today, if you visit, without exception, any childcare centre, kindy room, school first-aid room or outside-hours school care program, you will see a wall dedicated to displaying multiple Anaphylactic Action Plans. Each has a photograph of the allergic child and what must be done to save their lives.
FATAL REACTION
Australia has one of the highest rates of allergy in the world and is one of the few regions to report an increase in food fatalities.
Allergy and Anaphylaxis Australia (A&AA) says one in 10 infants now has a food allergy and that life-threatening food allergy rates have doubled in the past 10 years. In the six years to 2013, deaths from anaphylaxis in Australia increased 42 per cent.
A new anaphylaxis reporting protocol adopted in Victorian hospital emergency departments since November has already seen more than 1200 life-threatening allergic reactions reported.
An allergy happens when the body’s immune system overreacts to a normally harmless substance such as food or medication, or to environmental factors such as pollens, grasses, moulds, dogs, cats and insect bites.
Allergic reactions can range from a few hives to a life-threatening anaphylactic reaction of breathing difficulties and/or a drop in blood pressure. Anaphylaxis can become a life-and-death emergency within minutes.
Eleven-year-old Jazmine Bennett, of the Sunshine Coast, had her first brush with anaphylaxis when she was just nine months old. Sitting in her high chair, Jazmine touched a crust broken off from a piece of peanut butter toast. There was no peanut butter on the piece of crust but, within seconds, her lips started swelling and hives appeared on her arms. After a couple of minutes, she began projectile vomiting.
Jazmine’s mother, Sheree Johnson, didn’t even think of an allergic reaction. She picked her daughter up and drove to her local GP where she was sent to hospital emergency and Jazmine was administered adrenalin.
Johnson, 49, of Peregian Springs, says Jazmine spent two nights in hospital. A week later she took her daughter to a GP clinic that did allergy testing where she was told Jazmine was “fine” and not anaphylactic.
“The incident with the toast was so traumatic … it was very confusing to then be told she didn’t have allergies,’’ Johnson says.
Then, when Jazmine was three, at a Wiggles concert at Brisbane Entertainment Centre, she had another life-threatening reaction, this time from an unknown source. Sitting on her mother’s lap, Jazmine went limp and medical staff on site were unable to get her breathing under control. On the way to hospital, she had to be resuscitated.
Soon after this incident, Johnson, who also has a son James, 13, (with no allergies) had Jazmine tested by a specialised allergy clinic at Newstead, in Brisbane’s inner north. Here Jazmine was diagnosed with life-threatening allergies to peanut and pine kernel.
Jazmine has had other serious incidents requiring use of an EpiPen after she touched a kitchen bench top previously used to prepare pesto containing pine nuts and after holding hands with a child who had just eaten a muesli bar containing peanuts.
There are currently no approved treatments for peanut allergy, but Jazmine has recently been part of a three-year international trial involving 356 children aged 4-11 years from 31 sites in five countries. The PEPITES study required the children, all with peanut allergy, to wear a skin patch containing peanut protein or a placebo every day for three years, and undergo regular blood tests. While results so far have been “statistically significant”, they have not met the criteria for a positive trial result.
Jazmine’s allergies have also resulted in high levels of anxiety and, in psychologist appointments, she revealed she was “scared of dying”.
“Jazmine has a lot of anxiety from her food allergies,” Johnson says. “She started going to a psychologist when she was five and in the appointments she has said she has a fear of dying.
“You don’t want your child to worry but you still have to be really careful because it is so serious. In Jazmine’s case, it’s life-threatening.”
THINGS WE DON’T KNOW
The “top eight” foods that cause allergy are milk, egg, soy, wheat, peanut, tree nut, fish and shellfish. The most common fatal reaction is to shellfish, followed by nuts.
Allergies are usually measured by a skin prick test. The skin on the inner forearm, or sometimes the back, is pin pricked and then a minuscule amount of each allergen is placed on the broken skin. The size of the welt or “wheal” that develops is then measured in millimetres. The larger the wheal, the stronger the allergic reaction.
Reasons for the rise in allergic disease are still unknown. Research has looked at various environmental factors including caesarean births, vitamin D deficiency, phylates in plastics, fructose consumption, autoclaved food, use of antacids, types of fatty acids in the diet, the timing of introducing food to babies, a disruption of the gut microbiome, and the “hygiene hypothesis” or little early exposure to germs.
Most experts believe the surge in allergies is probably due to a combination of factors, including a person’s genetic disposition.
Researchers have also looked into why there are higher rates of allergy in children who are the first born in Australia to families who have migrated from South-East Asia. If the child is born in Asia and then comes to Australia as a small child, the risk of allergy is the same as with anyone else.
Professor Dianne Campbell is a paediatric immunologist and head of allergy research at Westmead Children’s Hospital in Sydney and has worked in the allergy field for 24 years.
She simply says: “There are still a lot of things we don’t know. We don’t have the golden bullet, the reason for the increase and that’s probably because there are multiple reasons.
“It’s about the environment and your gene reaction. As countries become more developed, their rates of allergic disease become higher. It’s not just because they are being diagnosed more.
“With kids whose parents migrate to Australia from South-East Asia … if you are first born in Australia, then your risk is much higher.
“Is that diet; is it microbiome? Whatever it is, it’s all tied up in a Western lifestyle and it’s difficult to unpick that.
“We also know that children are not growing out of their food allergies as quickly as they used to. We don’t understand why that is.
“More children have more allergies. If you go back to the 1950s or 1960s it would have been exceedingly rare. Now our outpatient clinic – and we are no different from any other tertiary referral clinic around the country – is full of children who have multiple allergies. That’s standard.”
In Australia, leading medical and patient allergy organisations – the Australasian Society of Clinical Immunology and Allergy (ASCIA) and A&AA – joined forces to create a National Allergy Strategy to combat a growing “crisis in the care of allergic patients in Australia” and to “fill the gaps in allergy care”.
A&AA chief executive officer Maria Said, a parent of a (now adult) son with severe allergies, says federal government funding is needed to increase awareness of allergic diseases.
“The cases where someone has died because of a food allergy are all preventable,” she says.
“It is a tsunami when it comes to allergies in Australia and we are still in the middle of it and we are losing people through the cracks – people who are not being diagnosed properly, not being treated properly and other people who are losing their lives.
“There are many people who haven’t been properly diagnosed. I come across adults all the time who are walking time bombs.”
Over the past three years, the National Allergy Strategy has received $2.5 million in federal government funding but it has asked for a commitment of $20 million over five years to increase awareness and education of health professionals, food service providers, regulators and the community, to implement anaphylaxis and drug allergy registers and to develop standards of care.
“We don’t have enough allergy specialists and anyone working in allergy is overwhelmed with the workload,” Said says. “And it’s not just food allergy – it’s insect allergy, drug allergy, eczema, allergic rhinitis. This is a national problem and it’s even more of a problem for those who live away from the capital cities.
“Allergic disease has been the poor cousin for too long. The impact on quality of life is greater than that of diabetes or rheumatoid arthritis. Why isn’t it given the attention other disease states are given when it is chronic and can be immediately life-threatening?”
TOO SCARED TO EAT
On Mother’s Day 2006, three-year-old Theodore Day licked a cashew nut at the behest of his grandfather to “just try it”.
Almost immediately, Theodore’s lips, tongue, eyes and ears swelled alarmingly, hives appeared all over his body and he began struggling to breathe. By the time an ambulance arrived, seven minutes later, he was barely conscious.
In hospital four hours later, Theodore’s tiny body had a biphasic reaction – a two-phase anaphylactic event – meaning he can react again, hours later, to the original exposure.
This uncomfortably close brush with death was the Day family’s shock introduction to the world of life-threatening allergy.
Theodore, now 16 – who was diagnosed with an allergy to all nuts and wasp stings – has spent his life being vigilant about what he eats.
For the most part, Theodore grew up without an allergy incident. But earlier this year, retrieving a ball from bushes in the family’s front yard, he felt a sharp sting on his arm, possibly from a wasp. His arm swelled almost immediately and he was injected with his EpiPen.
Only weeks later, he had a serious reaction in an Asian restaurant after eating a duck spring roll that unknowingly contained cashew nut.
Then, at his high school, an unknown exposure caused Theodore to have another allergic reaction. It was this unknown event – the third in a relatively short period of time – that caused a change in his behaviour.
He became consumed with debilitating anxiety, to the point where he stopped eating or even drinking water outside of his home without the supervision of his mum Maria Day, 52.
He began seeing a counsellor, but over about three months he lost 10kg. He was recently reviewed by an allergist as a matter of urgency.
“I was really careful growing up with my food. If I’m not certain, then I don’t have it,” Theodore says. “But I was uncertain what caused the reaction at school and it just changed everything. If I touched anything, I needed to wash my hands. I washed them constantly.
“Even though I had my own drink bottle, I was too scared to touch anything with my mouth in case it had accidentally touched something. I was scared to put my mouthguard in my mouth for rugby. I just wanted to play it safe. It was really playing on my mind. When I was retested by the allergist, it was a major relief just to know exactly what I was allergic to.”
Testing showed Theodore is now allergic to cashews and pistachios and that other nuts should be challenged into his diet in a controlled situation. If there are no symptoms, he must keep these nuts in his diet regularly to maintain his tolerance to them.
Teenagers and those aged in their early 20s are at the highest risk of fatal anaphylaxis.
It’s a time when risk assessment may be poor and there’s also a strong desire to “be normal” and fit in with peers. And then there’s kissing. Minuscule particles of food have been shown to remain in the mouth or on bristly facial hair for many hours or days after. In 2012, a 20-year-old woman died in Montreal, Canada, after kissing her new boyfriend who had brushed his teeth after eating a peanut butter sandwich.
Maria Day says she and husband Laurie, 58, were “beside ourselves” with worry about their eldest son’s recent anxiety. They also have a son Peter, 13, who has no allergies.
“Theodore was a nervous wreck,” she says. “His grades were slipping … he couldn’t focus because he was hungry and thirsty. It was awful. I didn’t know what to do. He wouldn’t even stay at home by himself in case something happened.
“No one could convince him. It was such a real fear for him and we needed to work through it so he didn’t end up with anorexia or OCD (obsessive compulsive disorder). He was dark under the eyes, he was wasting away.
“People don’t always understand or they may think you are overreacting but when the consequence is life-threatening, it’s normal to be anxious.”
NOT A LIFESTYLE CHOICE
Recent research conducted by A&AA found more than 80 per cent of the community confuses life-threatening allergies with lifestyle choices such as being vegan or disliking a particular food.
The word “allergy” is not used correctly by many people who may instead have a food intolerance – where there is an adverse reaction to a certain food that does not involve the immune system. Coeliac disease is also not an allergy to gluten but an auto-immune disease.
The research found one in four people experienced a food allergic reaction due to their allergy not being taken seriously by the person preparing the food, highlighting the need for better allergy education.
Prof Campbell says anxiety in food-allergic children and their families is common and results in reduced quality of life in terms of decreased social interaction.
“All food choices become stressful,’’ she says. “A lot of these children end up not going to birthday parties, not being invited to parties, their parents are often extremely worried about sleepovers and school camps and some kids get real phobias about eating and will need to see psychologists.
“The child worries about it, the parents worry about it, they can’t necessarily trust a takeaway food, or whether tables have been wiped down. It’s anxiety over eating and it’s every single day. You don’t get a day off.”
Professor Pete Smith, a paediatrician with a PhD in molecular immunology, ran a food allergy clinic at Great Ormond Street Hospital in London from 1999-2001, before setting up his practice on the Gold Coast. In 2011, he trained five GPs to run clinic Allergy Medical in Newstead, Brisbane, because he was dealing with the “ridiculous situation” of patients’ referrals expiring during an 18-month wait for an appointment.
“We set this clinic up with the simple goal of getting people seen, screened, safe and sorted,” Smith says.
“People were not able to work because they were having severe hives and swelling. Up to 80 per cent of allergy can be managed by well-trained primary care doctors.
“There’s been an explosion in allergies since the mid 1990s. The word tsunami has been used before but it’s very true.”
JUST ONE PEANUT
When my daughter was 13 she said to me: “Mum, it’s so much easier for me to die than any of my friends.”
One peanut, probably, would do it. As parents not prone to “helicoptering”, we have braced ourselves through each childhood milestone – beginning playgroup, childcare, kindy and school, attending birthday parties, sleepovers and school camps – with quiet trepidation of the life-threatening risks.
We have privately bristled at the occasional parent in the early primary years (when children are messy eaters and touch everything) indignant of their “right” to pack a peanut butter sandwich in their child’s lunch box.
We have flinched at reports of schoolyard “allergy bullies” who taunt food-allergic children with an item of food that can kill them.
But it has got better. Our girl has outgrown many of her allergies and is careful of her food choices. She has known no other way. And we are buoyed by current food-allergy research that may at least offer a “buffer” of tolerance, lessening the risk that an accidental exposure will be fatal. It’s a period of research that Campbell says is “an exciting time”.
“We are on the cusp of quite a few therapies,” she says. “There’s a whole lot of active research. Hopefully in the next few years we really are going to offer a bit more than just education, avoidance and ‘here’s your EpiPen’.
“We are getting much closer to at least making it safer and giving people more of a buffer. And one day, we believe, we will be able to make people properly tolerant to their food allergies.”
Originally published as When everyday food is fatal