It’s now common for schools to make food allergy accommodations to protect at-risk kids, while colleges in the United States are also moving in that direction (following a key ADA decision), and summer camps are starting to go allergy- and even gluten-friendly.

As one who gets feedback daily from Allergic Living readers, I hear more and more stories of inclusiveness and educators who “get it” when it comes to food allergies. This definitely is big progress compared to years gone by.

However, I must confess to feeling more concerned and reflective than usual this 2013 Awareness Week (May 12-18). If you’re reading this, you likely know why. We’ve lost four young people this spring to the swift and over-powering allergic reaction that is anaphylaxis.

Most recently, 11-year-old Tanner Henstra succumbed to a severe reaction on April 19 following a food accident in which he bit into a pretzel at a friend’s house that turned out to be filled with peanut butter. Eight-year-old Adrian Gutierrez, died two weeks earlier, having mistakenly sipped from his brother’s hot chocolate at a Starbuck’s shop. The boy with the wide grin and luminous brown eyes had been allergic to both dairy and peanuts.

Spring Break in March saw two tragedies: 12-year-old Maia Santarelli-Gallo passed away following symptoms suspected to be anaphylaxis – the incident occurred after she’d eaten an ice cream cone. The girl’s family had only ever been told she was dairy and egg intolerant. There was no epinephrine auto-injector; they had no idea she needed one.

Cameron Groezinger-Fitzpatrick’s mother said he had just arrived home from university for Spring Break in early March when he ate a cookie a friend offered. It was supposed to be peanut-free but turned out to contain peanut butter. Again, he didn’t get epinephrine, and succumbed quickly to the reaction.

This Sunday was Mother’s Day, and that’s four mothers – from Utah, New Jersey, Massachusetts and Ontario, Canada – who spent a sad day, mourning children who passed away long before their time.

Anaphylaxis is a scourge, but to fight it, we need better education among the general public, educators, airlines, restaurants – and even among those who live with food allergy and its risks every day. There are lessons from these deaths that go beyond the basic shock of tragedy.

Consider that the two younger boys both got epinephrine, but they got it late. The other two did not receive the life-saving shot at all. If there’s one thing we can all strive to do this Awareness Week, it’s to get the message out that: in anaphylaxis, seconds count and epinephrine – not antihistamines, not an asthma puffer – is the first-line medication and the allergic person’s lifesaver. Use it.

Epinephrine is considered an extremely safe drug, but in anaphylaxis, it works best when given promptly. The guidelines issued by the National Institute of Allergy and Infectious Diseases are very clear on this point: “If you are experiencing anaphylaxis, or even suspect that you are, immediately take epinephrine and seek immediate medical attention by calling 9-1-1. Delaying epinephrine use places you at significantly increased risk for a life-threatening reaction.”

Tanner Henstra’s mother Stacie learned these facts the worst way possible. Even as a nurse by profession, she told the local Utah newspaper, “I was shocked at the severity of his reaction. It was just so fast.”

Adri Gutierrez’s family’s has set up a Facebook page to keep the young man’s spirit and memory alive. His aunt is direct in a recent post to the food allergy community: “He didn’t get a life-saving epinephrine shot until it was too late…. Complacency and unpreparedness killed Adri. Don’t let this happen to your loved one.”

Time and time again at this magazine, we hear of a parent or a teacher or a caregiver who wanted to “wait and see if a reaction gets worse” before administering the auto-injector. This Awareness Week, let’s spread the word: Waiting is a bad idea. If you’re seeing the symptoms of anaphylaxis, give the epinephrine, and give it now.

To help with the education process, Allergic Living has created a new poster – Six That Save Lives. I encourage you to print it and share it with the school, the doctor’s office, anyone you think will benefit from it.

Let’s do our best to make the rest of 2013 a safe and inclusiveness time for all the kids and all the grown-ups who live with food allergies. If we keep up the education, watch that our young people don’t get complacent about food allergies, carry epinephrine and are calmly prepared to use it  – we can prevent the needless loss of precious lives.

See also:
• FARE’s new Food Allergy Bullying PSA and campaign.
• NIAID’s food allergy guidelines.
• A popular new anaphylaxis emergency course launches.

According to local news reports, Tanner Henstra, who also had asthma, was at a friend’s house last week when he took a pretzel from a bowl and popped it in his mouth, not realizing these pretzels were filled with peanut-butter. His mother, Stacie Henstra, told The Salt Lake Tribune that her son spat out the pretzel as soon as he tasted peanut, but the allergic reaction had begun. His tongue and throat began to swell.

Stacie Henstra said Tanner usually carried an epinephrine auto-injector with him, but he did not have the emergency device with him at his friend’s house. She also said that the boy, who had been diagnosed allergic as an infant, had never needed to use one before.

Tanner did have some other allergy or asthma medicine with him, which he took immediately before calling his mother, who is a nurse, to come pick him up.

“He sounded worried but otherwise OK,” Stacie Henstra told the Tribune. But during the drive home, Tanner began to have trouble breathing. When they got home, about four minutes away, a neighbor came outside and performed CPR on Tanner while his mom ran inside to get the EpiPen.

She gave him the injection, but it had little effect. He was transported to a local hospital in St. George (which is north of Las Vegas), then to a larger hospital in Salt Lake City. After two days in hospital, Tanner was removed from life support.

Young Tanner’s death adds to a tragic and concerning list of children and teens who have experienced fatal anaphylactic reactions this spring. (See our report: Tragic Spring: 3 Food Allergy-Related Deaths)

Allergic Living reminds readers of the need for constant vigilance with food allergies. Most important of all, we remind you that anaphylaxis can progress swiftly and that the drug epinephrine is most effective when used immediately. Please take a moment to review our emergency procedures slideshow – Six That Save Lives.

See also: The Salt Lake Tribune’s full report.

A fund has been established to help Tanner’s family pay for hospital and funeral expenses. Donations can be made here.

posted: April 26, 2013

Maia Santarelli-Gallo had never been diagnosed with any food allergy, although according to a local news report she had minor reactions to egg and some dairy in the past. She was with her father and older sister at a mall when the reaction occurred after eating an ice cream cone.

“She tells me she doesn’t feel good,” her sister told a local news station, “we go to the bathroom and the next thing I know is that she needs her inhaler and there is someone in the mall giving her CPR.” She was transported to a nearby hospital shortly after where medical staff failed to revive her and she was pronounced dead. It is currently unknown what actually brought on this anaphylactic reaction, although it is known the last thing she ate was the ice cream cone.

Earlier in the week, Cameron Groezinger-Fitzpatrick, who had asthma as well as allergies to peanuts and nuts, was home visiting from university for Spring Break. He had only been back for a couple of hours when he ate part of a cookie offered to him by a friend, which reportedly contained peanut butter. He hadn’t even unpacked yet, and his mother could not find his EpiPen. According to ABC News, she was told over the phone by a 911 operator not to administer an expired EpiPen which was in a nearby cupboard. It had only expired two months prior. By the time their neighbor came over with an auto-injector and administered it, it was too late. At the hospital, 15 people attempted for two hours to resuscitate the teen, but eventually were forced to give up.

“I didn’t know you can die from nut allergies. I feel foolish,” Robin Fitzpatrick, Cameron’s mother, told ABC News.

Both of these terrible occurrences serve as tragic reminders that food allergies can be extremely dangerous. In Maia’s case, it shows that proper diagnosis is essential in the case of any suspected food allergy, even if the reactions to date have only been mild. In Cameron’s case, it highlights the importance of always having an epinephrine auto-injector close by, and knowing when to use it. In either case, it is always important to be educated on food allergies in general.

Little Amarria was the wakeup call. We have the tool, the auto-injector, to stop the senseless allergy deaths like hers. Now we have to use it.

On the first day of school after Christmas of 2011, 7-year-old Amarria Johnson and her Grade 1 classmates in Richmond, Virginia bounced outside of Hopkins Road Elementary after lunch to play. You could usually hear Amarria before you saw her: she loved to sing, in church, for the video camera, in the car, at school. She would sing for anyone, and she had big plans to be a star on the Disney Channel.

For this first day back to school, Amarria’s mother had carefully rolled her daughter’s long hair in a bun. The girl was excited to be going back. “She loved everything,” her mother Laura Pendleton told Allergic Living. “The world was an awesome, innocent place.”

Then a child in the playground gave her a peanut. Amarria had always avoided the peanut butter and jam sandwiches that the school offered for lunch every day because she had an allergy to peanuts. But this time, for reasons no one knows, she popped the peanut into her mouth.

Amarria knew right away she was in trouble. She asked the teacher outside to help. That was exactly what she was supposed to do. But then the system failed her.

The teacher walked Amarria to the school’s health clinic, where an aide searched for an epinephrine auto-injector with Amarria’s name on it. An auto-injector shoots epinephrine, also known as adrenaline, into the body. The drug can stop a severe allergic reaction outright or buy enough time for paramedics to arrive. Amarria desperately needed that shot of life; in the minutes after she arrived at the clinic, she was struggling to breathe. But the clinic did not have an auto-injector prescribed for Amarria.

A Child Runs Out of Breath

Over the next few minutes, the girl ran out of breath, right there in the clinic. Just before 2:30 p.m., the school called 911, but by the time firefighters and police arrived, Amarria’s heart was failing. The rescuers tried CPR; they tried to restart her heart with a defibrillator. They rushed her to Chippenham Hospital, but it was too late. Amarria was pronounced dead shortly after she arrived. The cause of death: anaphylaxis and cardiac arrest.

It is such a senseless, heartbreaking loss of a little girl so full of life. But beyond the tragedy, this disturbing issue has emerged: there were likely auto-injectors prescribed to other students in the Hopkins Road Elementary clinic. (Allergic Living has learned this was likely the case, though the school board declines to comment on specifics.) If an auto-injector was there, however, the aide was not allowed to use it. Why?

“Many of our students [in Chesterfied County] have EpiPens at school,” acknowledged Shawn Smith, the board’s spokesman. “It’s illegal to give a prescription drug to someone else,” he said.

The staff at the county’s public schools are instructed that they are only allowed to use an epinephrine auto-injector if it is specifically prescribed by a doctor for the child in question and if the school has the child’s written action plan for allergy emergencies. “Absent those two,” Smith said, “we’re unable to carry out the doctor’s [verbal] orders.”

Next page: Why we can stop the tragedies – now

Toddlers and Preschoolers

Start the awareness – You’ll need to inform a young child that an allergen can make him or her sick. Show what that food looks like, perhaps using a photo, and stress that it must be avoided. Begin to introduce the allergy rules (e.g. no sharing, hand washing, and never eating a food unless your parents approve it.)

“As with any difficult topic, keep it simple,” says Lynn Miller, an assistant professor of psychology at the University of British Columbia, who researches prevention of anxiety disorders in children. “You can have the child restate what they think they have understood.”

Above all, talk in positive terms.“You can tell your child they are raised with something special, and that everybody has to learn to manage something in their lives.” If you are going to be present at birthday party, she suggests saying you’re coming as a “special helper” – then you’re not the food vigilante.

Don’t say “you could die” – allergist Dr. Zave Chad suggests instead: “It’s serious, you could get hurt,” while other experts opt for “you could get really sick.” He says “young children understand ‘you could get hurt’ a lot better than‘you could die.’”

Child psychiatrist Dr. Jane Garland notes that most kids don’t fully grasp the concept and permanence of death until the age of 8 or 9.

Elementary School

Recognize anxiety spikes – There are three big “cognitive bumps” of brain changes within these years: ages 5 to 6; between ages 7 and 8; and just before adolescence, at 10 or 11 (older in some boys).

After the second “bump”, kids understand more about their allergies, and are more inclined to become anxious in trying to manage them. The brighter your child, the more they can contemplate abstract concepts, and the more anxious they may become.

Talk about fears – It will depend on maturity, but by about 9, Miller thinks parents need to start addressing (calmly) that it is possible to die of anaphylactic reactions – since an allergic child will hear this from other kids. “But you can discuss: ‘what’s the likelihood?’ and ‘everybody can die of something.’”

For instance, you might say that if a person was so frightened he never left home, that wouldn’t be a normal life, and that “there is a balance and risk we all take.”

She says to mention how few deaths there have been from anaphylaxis, and that most happened when the person didn’t have their auto-injector. “This is an opportunity to discuss, ‘what are you going to do [to stay safe],’ and evaluate his or her problem-solving skills.”

Self-protection – By the second or third grade, children need to be able to recognize and know how to avoid their allergens. You’ll need to explain: what an allergic reaction looks and feels like (you could feel really bad, get hives,have a stomach ache or have trouble breathing), and how to handle an emergency. Stress the importance of always carrying an auto-injector, and wearing medical ID, such as MedicAlert.

Managing allergies, and anxiety – It is a lot on little shoulders. A stomach ache is the leading indicator of anxiety, and a sign that all may not be well with a child.

Sleepovers – Miller says research shows kids who take part in sleepovers at friends’ houses do a better job of managing their lives as adults. So ensuring your child participates in normal kid activities allows you to talk with him about managing allergies away from home, and provides practice.

Miller says the child should think: “I feel confident away from my parents and can manage my own feelings of distress.”

Let your child know the allergies are serious but manageable if they follow rules of awareness, avoidance, and are ready for an emergency.

Next: Tougher Love in the Teen Years