Childhood allergies: ‘We could see our little girl slipping away’

Alison ate some yogurt.

Within 10 minutes, her eyes and lips had swollen and she was vomiting. She was in anaphylactic shock.

Within 15 minutes, her airways were closing.

It was Valentine's Day. Dr David Menzies, a consultant in emergency medicine at St Vincent's Hospital in Dublin, was taking his wife for lunch when the call came in about this gravely ill three-year-old girl in Greystones, Co Wicklow. Dr Menzies is a volunteer with Wicklow Rapid Response which supports the ambulance services by providing local back-up.

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Lunch was cancelled. He raced to the scene.

Alison's parents, Ruth Kidney and Ben Slater, knew what to do: administer an EpiPen. But it wasn't enough: her reaction was unusually severe.

“As a baby, she was really unwell,” Ruth says. “By the time she was three months old, we realised that she was in pain and that this was not normal. She was five months old by the time we finally knew she was allergic to dairy. It was a relief to get that answer, but nobody imagined that we would be where we are now. When you think of anaphylaxis, peanuts come to mind, but not milk. Nuts are easier to keep at bay, but keeping a child away from milk is much harder because dairy is everywhere.”

Dr Menzies was at their Greystones home within minutes. Alison was given multiple EpiPens within 25 minutes as well as oxygen, medication to loosen her lungs and a drip of steroids. “These are the circumstances that needed to happen for me, her mother, to really understand how serious this is,” says Ruth. “She was in my arms, swollen, purple, struggling to breathe and completely unrecognisable. Ben and I could see our little girl slipping away from us.”

Phenomenal work

Calling for an ambulance saved Alison’s life, says Dr Menzies. “The ambulance service is brilliant and does phenomenal work, but some emergencies are time-critical and, with Ireland’s dispersed and rural populations, back-up services can be vital. Because doctors like us are based in the community, we can get to the scene a little quicker.”

After being treated by Dr Menzies and the team at Crumlin children's hospital, Alison stabilised. Luckily, she made a full recovery. "She woke up and was talking about the butterflies on the wallpaper, and asking where our dog Denny is," says Ruth.

“It was like winning the World Cup,” Ben smiles.

“We are so indebted to the hospital and to Dr Menzies,” says Ruth. “I saw him in the hospital, looking over anxiously and nervously at our child, and it was so clear that this was someone who cared deeply for my child. He works a full-time, high-pressured job, as all the other volunteers do. They are out there to save lives because they have the burden of responsibility that comes with these skills.”

That day has changed Ben and Ruth’s life and highlighted the importance of the local volunteer services. Now, they face a struggle to get Alison into a school that can keep her safe.

“That day could have gone very differently,” says Ben. “Thankfully, today we still have joy and laughter in our house, and our house is full of divilment. Alison has a little sister and we’re expecting our third child next year. We want to keep our family safe. But there is a lack of awareness about allergies. Not everyone takes it seriously, or they mix it up with food intolerance. I don’t want to belittle food intolerance, as it can cause some very painful digestive problems, but food allergies can cause whole body or anaphylactic reaction.

“So now when I tell people that my daughter suffers from food allergies, I say that she suffers from food allergies that cause anaphylaxis, and that if she ingests dairy, nuts, egg or certain tropical fruits, she will need an EpiPen, and her life and wellbeing will depend on how quickly she gets it.”

Ben and Ruth are constantly risk assessing. Alison is learning what she can and can’t eat, but studies show that the teenage years can be the riskiest time as teens reject rules and strictures and make mistakes.

Alison's case is rare as the vast majority of children with food allergies do not experience such highly extreme reactions. This can make people think that her parents are overreacting

“When we enter a room, we are always looking for the mistake,” says Ben. “And there is almost always a mistake: that cup of tea with a little left at the end of it, the baby’s bottle left in arm’s reach, a piece of chocolate or a sweet dropped under a table. Shopping can be a nightmare. On packaging, allergens are highlighted and easy to see, but anything outside of a packet is a risk. Recently, I bought myself some sliced chicken without checking and, when I came home, I saw on the back of the packet that it contained milk; I beat myself up about it. Stock cubes, crisps and even jelly sweets are a risk.”

Extreme reactions

Alison’s case is rare as the vast majority of children with food allergies do not experience such highly extreme reactions. This can make people think that her parents are overreacting but, in managing their daughter’s condition, Ben and Ruth have always been guided only by their doctors.

Today, they are working with the medical team to explore possible treatments. Alison has a healthy and balanced diet, with her parents avoiding processed food; the emphasis is on fresh ingredients. Ben and Ruth understand that they can’t scrub allergens off the face of the earth and are constantly aware of how challenging it can be for other people.

Their social life has taken a hit.

“We can’t leave Alison at playgroups or sporting events because they are all surrounded by food,” Ben explains. “We can’t bring her to children’s parties. Playgrounds are a risk. There could be some ice-cream dropped on the ground. We have to have absolute trust in our friends when we go to their house and we’re aware of what an ask that is. We have to risk assess people who come into our house. Our medical advice is us not to go to restaurants or cafes: they are too high risk. We want her to have as normal a life as possible.

“In every other way, she is a happy and healthy kid, bouncing off the walls. She smiles and charms all the doctors. We’re speaking out because we need to raise awareness: if you do meet people with food allergies, please accept, respect and tolerate them. It would give families like ours just a little less to worry about.”

– For the most medically accurate information about allergies in Ireland see the Irish Food Allergy Network.

AN EDUCATION FOR ALISON

Playschool is a rite of passage for most children. Ben and Ruth knew that finding a place that was willing to cope with Alison’s allergies would be a problem. It didn’t take long for them to feel despair.

“We were told they couldn’t afford the insurance,” says Ruth.

“Or that they were full – even though we’d see them advertising spaces the following week,” Ben adds.

But then they met Kerrie Redford, a childcare provider who runs Lir Playschool in Delgany.

“They contacted me during the summer,” Kerrie recalls. “Ruth explained briefly about the severity of Alison’s allergies and asked if we could meet. I was concerned about how we could keep Alison safe, of course. We met a few times during the summer and I decided that we had to figure out a way to do this. I never considered turning her away. Alison deserves her education.”

With Ben and Ruth’s permission, Kerrie contacted Alison’s GP. From there, she spoke to the Wicklow County Childcare Committee. A plan began to form. Together, they realised that the best way to keep Alison safe was to make the playroom allergen free. Ben and Ruth got local businesses on board to provide the mid-morning snack so that parents were not giving their children food to bring in with them.

“We had to get the other parents on board,” says Kerrie. “They all met Ben and Ruth who explained the story in detail. When they heard it, they were excited to give Alison a proper chance at a preschool experience. Ben stays nearby to administer an EpiPen if necessary (Ben has had to give up his job to do so). Diversity and inclusion are important, and that extends to children with allergies.”

Not all primary schools will see it the same way and creating an allergen-safe classroom may not be possible. Alison’s doctors have raised the difficulties that her parents might encounter when it comes to school places. Ben and Ruth have already begun looking.

“A small school would be ideal,” says Ruth. “We don’t want her homeschooled. We worry that if we are upfront, we will simply fall to the bottom of the waiting list. We hope that someone will help us and, as Kerrie did, realise it is not impossible. We want to find a way.”

THE SCIENCE OF CHILDHOOD ALLERGIES

Ben and Ruth encounter scepticism every day. When it comes to childhood allergies, what are the facts?

Prof Jonathan Hourihane of Cork University Hospital is one of the leading paediatric allergy specialists in Ireland. He points out that allergy diagnosis is complex: allergy tests alone provide a 50 per cent false positive rate, so doctors need to work closely with the patient to establish a full case history.

About 4 per cent of children have the potential for allergies and about 2 per cent have a food allergy. However, childhood death from anaphylaxis is very rare.

Prof Hourihane explains that anaphylaxis is a generalised severe reaction that can include hives and asthma attacks, as well as “the underappreciated problem of low blood pressure which does cause fainting and loss of consciousness”.

"Four per cent of anaphylactic reactions happen in schools in Ireland, compared to 19-20 per cent in Europe; this may be because Irish parents are in charge of school food preparation," he says.

“If a child starts wheezing in the middle of the restaurant having been near certain allergies, it may not really be asthma. These reactions are more common at weekends when children are out and about with their families and when, unsurprisingly, the allergy service is not available, so they are usually sent back to the GP and can fall into a gap between emergency and allergy services.

“We need more allergy services in Ireland: 70 per cent of patients that come to see us could be seen by a GP with allergy experience; this is a community disease looked after by less than a handful of paediatric specialists and we are working to change that.”

Dr Paul Carson is an allergy specialist at Slievemore Clinic in Stillorgan, south county Dublin. He says that parents of children with allergies sometimes meet an indifferent approach from doctors and, as a result, turn to pseudoscience. On the other hand, a growing number of parents are deciding that their children are intolerant of gluten or dairy, without any thorough medical assessment. Because of this, children with genuine allergies are not always believed.

“Our clinic is full of people who have self-diagnosed allergies and excluded dairy from their child’s diet,” says Prof Hourihane.

“Children on diary exclusion – including those with diagnosed allergies – are smaller, lighter and have lower bone density, and they can end up as smaller adults. Without getting calcium into growing children, there is a risk of osteoporosis in old age.

“We urge people not to go on put their children on an unsubstantiated diet without having their condition confirmed. There is no scenario in Ireland where you can have an allergy test outside of a doctor’s surgery. Anything offered online, on the high street or outside of a doctor’s surgery is quackery.”