When Shelby Barone walked into son Andrew’s class at school on Valentine’s Day, she found the kids decorating cookies. All the kids, that is, except Andrew. Her son was in the corner, head down on his desk, looking miserable. The reason? Andrew suffers from a severe peanut allergy. His school, in an effort to protect him from exposure to peanuts in other kids’ lunches, took an approach that’s becoming increasingly common: they segregated Andrew at his own “peanut-free” table at lunch and banned him from school events and activities involving food.
In short, Andrew was an outcast in his own school.
Shelby, whose son nearly died from his first allergic reaction to peanuts at age 2, says she understand why the school took peanut allergies seriously. But to sideline her son from socializing with his friends over lunch or at a school party? To her, that seemed too harsh. “It affected him. He felt different because of his allergies,” recalls the mom from Aliso Viejo, California. “No child should ever be segregated for any reason.”
And yet, as the number of children with food allergies rises (an estimated 1 in 13 kids under age 18 now have some sort of food allergy), an increasing number of schools are opting to do just that – separate the kids with food allergies from their peers.
“It’s becoming more common,” says Michael Spigler, vice president of education at the food allergy advocacy organization FARE. While no statistics exist on the number of schools with segregation policies in place for allergies, “Initially parents were excited to have some kind of accommodation,” Spigler continues. “But now it’s clear that this seclusion can lead to stigma.”
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Nonetheless, schools may feel forced to take this extreme stance to keep kids with allergies safe – and to avoid lawsuits.
“As a lawyer, I would caution schools that if a child had a dangerous food allergy and the school did not take reasonable efforts to protect him, that school could be sued,” says Scot Conway, JD, a licensed California attorney with 25 years experience working with children with food allergies and their parents. “Letting children with allergies sit with other kids might make allergic items too accessible.”
Indeed, some schools have seen tragedy. In 2012, a 7-year-old girl in Virginia with severe peanut allergies died of an allergic reaction at her school, which did not have her medication handy. In 2013, a high school student nearly suffocated when a classmate secretly slipped a hazelnut in her drink. As these stories make clear, schools do need to take food allergies seriously, and some administrators may see sequestering these kids as a fairly fail-proof solution.
But what about the effect on the kids?
Although Shelby had been aware of her school’s policy since Andrew started kindergarten, at first it didn’t bother him – so it didn’t bother her. By second grade, however, being shunted from his friends at lunch started to wear on him. “He felt a distinct difference between him and his friends,” Shelby says. “While all of his friends would go and sit together, Andrew had to sit by himself with children he didn’t relate with.”
When she shared her concerns with the school, Shelby says they refused to change their policy. “They said that they could not ask parents to not send nuts in their kids lunchboxes,” she recalls. “They also said that Andrew would just need to stay home on school party days.”
The school claimed this was for her son’s own good, but not all experts agree.
“As a certified school psychologist, I am highly concerned about isolating children for any reason, including food allergies,” says Lindsay Popilskis, PhD, a school psychologist in New York. “Not only will isolating children from their classmates limit their socialization opportunities, they may experience peer rejection by being left out of birthday parties and other after-school opportunities. Children who are shunned often develop self-esteem issues, declines in their academic performance, and other problems.”
They may even run the risk of being bullied. Schools and parents have reported a rise in cases where kids threaten peers with food allergies, wielding peanuts or other allergens as weapons. And sometimes even parents butt in, like picketing in front of a school in Florida to protest how their kids were forced to wash their hands and rinse their mouths to avoid exposing a 6-year-old classmate to any trace of peanuts.
While it’s understandable that parents may be angry that they can’t bring in cupcakes or pack their kids a PB&J for lunch at school, allergy advocates urge people to think about it from the point of view of kids like Andrew: doesn’t he have a right to sit with his friends at lunch or celebrate at class parties rather than sit in a corner? Can’t we as a community put up with a small inconvenience so that every kid can have the same chance to thrive at school?
For Andrew at least, being labeled an outsider was too much and eventually prompted Shelby to enroll him in a new school with a more lenient allergy policy. Her son’s self-confidence soon returned.
But moving schools isn’t a parent’s only resort: if your school’s food allergy policies seem too strict, too lax, or just not right for your child, there are things you can do. Spigler suggests that parents consider getting a personalized food allergy management plan. Section 504 of the American Disabilities Act gives kids with food allergies the right to a safe and inclusive education. It allows you to create, in collaboration with your school, a written plan describing how your school will address the individual needs of your child.
“For instance, schools may establish ‘food free celebrations’ so kids with allergies can participate, or hold celebrations in the cafeteria, which is safer than a classroom since there are protocols for washing down tables,” says Spiger. Other experts agree that there are plenty of ways to protect kids with allergies without isolating them.
“Schools could let these kids choose two peers per day to join him under the condition that neither child brought or purchased foods that might trigger a reaction,” suggests Popilskis. “Also, rather than ostracize the allergic child, turn the tables – no pun intended – and have a special spot for all the children who bring predetermined 'safe’ lunches. This idea no longer labels kids with allergies in a negative light.”
How do you feel about schools segregating kids with food allergies? What would you like done if it’s your child?
Every three minutes, a food allergy reaction sends someone to the emergency room. It’s an alarming statistic that puts parents and adults on their heels. In some extreme cases, mere nanograms of peanut protein can trigger a dangerous reaction and a mad dash to the hospital.
The top 8 - milk, eggs, peanuts, tree nuts, fish, shellfish, soy, and wheat - cause about 90% of all food-allergic reactions. The marching order for decades has been avoidance and training children to become allergen inspectors before consuming certain foods. But it’s very difficult to track and vet every plated meal or crumb that a child with a food allergy might come across. Accidental ingestion happens, and for some, it can be fatal.
Instead of avoidance, experts are looking at new ways to retrain the immune system and develop new treatments to desensitize food allergies. Dr. Kari Nadeau is on the frontlines, leading a team of specialists and running clinical trials at Stanford’s Sean N. Parker Center for Allergy & Asthma Research. You read that name right, it’s the same Sean Parker of Napster & Facebook fame who has his own nut allergies.
On an upcoming episode, TechKnow visits Dr. Nadeau and reports on the latest findings from her clinical trials. The following was adapted from an interview with “TechKnow.” It has been edited for length and clarity.
TechKnow: Can you give us a broad-brush review of the status of food allergies in the U.S.?
Dr. Kari Nadeau: The numbers of patients with food allergies that our doctors diagnose is about 1 in 13 children. So that means out of any classroom, about 2 children will have a doctor’s diagnosis of food allergies. The problem is really with the whole population, probably 17 million plus in the U.S. that have food allergies. We think that they have an 11 to 27% chance of having anaphylaxis sometime in their life.
How do those numbers compare to worldwide statistics?
What’s interesting in different countries is they have different allergies. Here we have peanut in the U.S., Australia in some age groups, 1 in every 8 children can have food allergies there. Australia has one of the highest rates. And they have cow’s milk, egg, and peanut. Whereas let’s say a place like Italy and France, it’s more hazelnut allergies in children in terms of their nut allergies. So we’re trying to understand why these prevalences are developing and why this predilection toward certain food allergens is different countries.
Is that why Xolair is in the picture here? Tell us about it.
Xolair was manufactured by Genentech and is now licensed with Novardis. That medicine in and of itself is what we call monoclonal antibody. It is engineered to be able to bind to this molecule called Immunoglobulin E (IgE). IgE is the match that lights the fire behind allergy. Within 6 minutes you can have this positive feedback reaction in the human body that creates this really important and very serious allergic attack. And so Xolair binds to this IgE and kind of covers it, so then that IgE can’t function to be able to cause that reaction.
So we looked at that and we thought oh, if it’s working against IgE and we know that IgE is important in food allergy, what if we start giving it initially to people with food allergies and then we start giving them the food that they’re allergic to? Could that protective cover help us increase the ability to get children and adults to food allergens to the same level that they’d like to eat them?
That has to make a huge difference for the patients…
When so many people are suffering from food allergies and the only hope is to be able to avoid foods, that can be very disabling to patients. And it’s anxiety provoking not to be able to go out to parties or not to be able to go to soccer games, and be in the same environment, and people have been coping.
We hear about peanut allergies as being really troublesome, really severe, are they the most severe food allergy?
Each person is different, but as a population peanuts have the highest rate of being associated with anaphylaxis and near fatal or fatal events. That’s why we do have to be very careful at understanding different foods, changing labeling so we can make sure that we have educated consumers that if people do have an allergy to peanut or to another item and they know they have severe reactions, they need to avoid those items, for now.
So that’s why in the past the American Association of Pediatrics recommended that we don’t feed young toddlers and infants peanuts, right?
Right, they were being very careful and in those days they didn’t have as much data as they do now. Now we have studies showing that in infancy and in toddlerhood we have a unique period perhaps where we could train the body to prevent allergies.
What is it that keeps you going? What drives you here?
The satisfaction is team oriented as well as personal. To be able to watch a child or an adult be able to eat the very same thing that months prior (they)wouldn’t even want to look at or they were scared that they couldn’t eat out at a restaurant. What inspires me are those stories to make sure that patients have an improved quality of life. Because in the end that’s what we all want for any disease, to have that improved quality of life where you can go socialize, where you can go eat a food without having to be worried.
My name is Luke Sullivan and I am a 14 year old boy with a severe peanut allergy. I carry multiple epi-pens everywhere I go, and I have to think about what is in every food I put in my mouth, and everything that I handle that may have come in contact with peanuts. Constant diligence is my life. Even being around my friends who may have recently consumed peanut butter sandwiches, M&Ms, the list goes on. The simple childhood ritual of a sleep-over at someone's house is a carefully planned mission. This started when I was 5 years old. I almost died from eating a tiny chocolate containing peanut flour. A peanut allergy I never knew I had....
Go now below to click on the link and fill out this fine petition from Luke.
Luke Sullivan was only five years old when he ate a tiny chocolate containing peanut flour and suffered a life-threatening anaphylactic reaction. He was rushed to hospital. His family did not know he was severely allergic to peanuts. His mother said it was terrifying.
“He kept saying, ‘Mom, I can’t breathe, I can’t breathe,” Luke’s mother Grace Sullivan told Global News. “It’s something no Mom should ever see, because it’s something you’ll never ever forget.”
He’s now 14. Luke and his family are diligent about what he eats and keeping him safe.
“It is stressful. Every day is stressful. Every day we think about what he eats, what he touches, who he’s around, where he goes,” Grace said .
To minimize the risk, Luke had never been on an airplane – too afraid to fly. That all changed in December. He and his family booked a Caribbean cruise which meant a flight from Toronto to Fort Lauderdale, Florida.
So the family took 13 auto-injectors filled with the life-saving drug epinephrine with them. Luke carried them in his backpack.
“The moment I got into my seat my Dad wiped everything down for me and placed a towel on the seat for me and he notified the people behind, in front, and beside us of my peanut allergy. It was really scary,” Luke said.
Luke Sullivan (with his father) takes his first trip on a plane. Sullivan has a life-threatening allergy to peanuts.
Luke said he realized many others with life-threatening food allergies are grounded due to fear. So he launched an online petition, asking Prime Minister Justin Trudeau to remove “peanuts/nuts from airlines.”
“It’s a life or death situation…it’s important that people don’t bring out their peanuts and nuts,” Luke said.
Global News contacted the prime minister’s office, deputy director of communications, Olivier Duchesneau, provided a statement:
“We can reassure Mr. Sullivan that the Government of Canada is already looking into this matter. We also want to take the opportunity to thank him for raising this issue. The Canadian Transportation Agency was tasked with examining the risks to air travelers with potentially life-threatening allergies. They will provide the Minister of Transport with their findings next spring and Minister Garneau will carefully review them and follow up appropriately.”
Right now airlines follow different protocols regarding severe food allergies like peanuts. Some airlines create a buffer zone for allergic passengers – some make on board announcements that a passenger has a severe food allergy, but other airlines still serve food containing peanuts or tree nuts – and passengers bring their own.
“It’s kind of brutal we didn’t choose to have an allergy,’ said Luke, “It just happened. It’s not fair that a small bit of the population can’t travel and explore the world.”
Luke carrying in his backpack 13 auto-injectors with the lifesaving drug epinephrine.
Beatrice Povolo, director of marketing and communications for Food Allergy Canada said it is concerning for those with severe allergies being in the air far away from medical help if required. Food Allergy Canada hopes a consistent policy can be introduced and recommends training for airline staff and on board epinephrine.
“Managing food allergies is something that is ultimately the responsibility of the individual at risk and their family,” Povolo told Global News. “So in a scenario like this on board an airplane, there could situations where other passengers are asked to refrain from eating certain things like peanuts or nuts because there is someone around them that has a food allergy. We would look for the support of the community in order to help support those with food allergies as well.”
She added more research is needed looking specifically at risks.
“I think really understanding the risks aboard an aircraft is key to this scenario, and there has been limited research that has been done specifically on this issue. We would like to see more to really truly understand what the risks are for passengers,” said Povolo.
According to Food Allergy Canada, close to 2.5 million Canadians have at least one food allergy. Peanut allergy in Canada affects two in 100 children. About 300,000 Canadian children under 18 years have food allergies.
Luke’s petition is not the first, the Canadian Anaphylaxis Initiative launched a petition in 2014 asking the federal government to “Enact a Policy to Reduce the Risk for Anaphylactic Passengers.” According to the group its petition is part of a governmental review. The group has worked with Ottawa on raising awareness about anaphylaxis since 2009. Debbie Bruce, director of the Canadian Anaphylaxis Initiative and a mother of two sons with life-threatening allergies knows no environment can be risk-free but hopes risks on board planes can be significantly reduced.
As for the Sullivan family, they informed passengers around them, creating their own version of a buffer zone. Luke’s mother Grace said when they told the passengers about Luke’s life-threatening allergy the passengers were “respectful and considerate.”
Luke plans to keep fighting and hopes others will sign his petition to make the skies safe for everyone.
“You can last a few hours without your peanuts and stuff … I’d just like to reduce the risk.”