Family Food Allergy Foundation Memorializes Elijah-Alavi

Elijah-Alavi

The parents of three-year-old Elijah-Alavi were devasted by the loss of their son. While at preschool, Elijah, who had food allergies including dairy, was mistakenly given a grilled cheese sandwich. He suffered a fatal attack of anaphylaxis. From that tragedy Elijah’s parents embarked on a path of advocacy and education, so that other parents wouldn’t have to experience the same heartbreak. They founded the Elijah-Alavi Foundation, which includes “Elijah's Echo,” an initiative raising awareness of food allergies and anaphylaxis.    Read the article here.

Elmhurst, ILL mom pushes EpiPen availability after teen daughter's allergy death

"I love you to the moon and back!"

This sad story of a teenager’s recent death from anaphylaxis in Elmhurst, Illinois reminds us how important our efforts are to have epinephrine available at all public venues. Annie LeGere’s mother, Shelly, is now working with Illinois lawmakers to pass legislation that would also authorize trained first-responders such as police, EMTs and firefighters to administer epinephrine in emergencies.

Shelly LeGere greets classmates of her late daughter Annie alongside a photo of her at a prom-like memorial Dec. 12, 2015
Shelly LeGere greets classmates of her late daughter Annie alongside a photo of her at a prom-like memorial Dec. 12, 2015, at Wilder Mansion in Elmhurst. Annie’s allergy-related death in August spurred her mother to press for wide availability of lifesaving epinephrine auto-injectors in public spaces. (James C. Svehla / Chicago Tribune)

Elmhurst, ILL mom pushes EpiPen availability after teen daughter's allergy death

By Vikki Ortiz Healy
Chicago Tribune
January 5th, 2016

On the day of her 13-year-old daughter's funeral, Shelly LeGere knew she couldn't spend the rest of her life going over the agonizing moments before her daughter died.

The way Annie called at midnight from a sleepover at a friend's house in August, saying she was having trouble breathing and wanted to come home. The way the Elmhurst mother hurried out the door, still in her pajamas, with a bottle of Benadryl in case Annie's mild seasonal allergies were giving her trouble. The way the mother arrived within minutes — to find her daughter unconscious and barely breathing on her friend's kitchen floor.

"The police officer was there. I looked at him and I said, 'Don't you have anything? What can we do?'" said LeGere, an operating room nurse with decades of experience. "Every ounce of the nurse in me went out the door."

Annie LeGere died nine days later at Advocate Children's Hospital in Park Ridge from brain injuries that came as a result of anaphylactic shock after an unknown allergic reaction, likely to something she ate, according to her doctors. The death stunned members of the west suburban community, where grief-stricken teens have spent months planting trees, wearing pink bracelets, organizing a memorial walk and preparing for "Annie's Pink Christmas," a prom-like memorial held Dec. 12.

Shelly LeGere, her husband, John, and 23-year-old son Bobby have tearfully accepted those gestures. But while looking around the room at her daughter's funeral luncheon, LeGere vowed to do more.

Through a new foundation, To the Moon and Back, the mother has made it her mission to equip first responder emergency vehicles, schools and as many other public settings as possible with epinephrine auto-injectors, such as the best-known brand, EpiPens. If administered within minutes, they can successfully treat severe allergic reactions — and save lives. The foundation has collected nearly $40,000 so far, which LeGere plans to use to supply EpiPens to places in need, pay for allergy awareness speakers to visit schools and promote legislation requiring EpiPens in public settings.

LeGere joins a growing movement of legislators and allergy-awareness advocates who contend that a dramatic increase in food allergies in children — a growth of 50 percent from 1997 to 2011, according to the Centers for Disease Control and Prevention — has made it crucial to make EpiPens as readily available as automated external defibrillators used for emergency heart problems.

"I need to do something, something big, in order to make some sense out of this," LeGere said. "If (epinephrine) had been available, maybe Annie would be with us today."

According to the nonprofit Food Allergy Research & Education organization based in Virginia, nearly 15 million people — 6 million children — in the U.S. have food allergies, causing a growing public health concern. Food allergies result in more than 300,000 ambulance trips to hospitals each year for children under the age of 18, and teenagers and young adults are at the highest risk of fatal food-induced anaphylaxis.

Meanwhile, the availability of epinephrine treatments varies widely from state to state. In Illinois, a 2011 law permits schools to keep epinephrine auto-injectors in stock for general use, going beyond the past practice, where school offices held EpiPens only for students who obtained personal prescriptions. A 2014 expansion of the law gives more school employees legal permission to administer the drugs when needed. Since the law was first passed, 3,011 schools in Illinois report keeping epinephrine injectors stocked in case of emergency, according to data from state Sen. Chris Nybo, R-Elmhurst, who sponsored the legislation.

But Illinois does not require first responders to carry and use epinephrine. LeGere is working with Sen. Nybo on new legislation that would authorize trained first-responders such as police, EMTs and firefighters to administer epinephrine in emergencies. The new bill could be introduced to lawmakers in January, Nybo said.

Annie LeGere grew up with only mild traces of allergies. She used an inhaler to help with bronchial congestion from seasonal allergens. And once, a few years ago, she told her mother her tongue felt slightly tingly after eating sunflower seeds. Her mother advised her to stay away from them, and Annie did, reading the labels on packages before tearing into granola or protein bars, her mother said.

Annie was a typical teenager, who soaked up the last days of summer before eighth grade with her friends. She loved taking bike rides with friends to downtown Elmhurst or along the Illinois Prairie Path. She slathered her favorite foods with ketchup, her favorite condiment. She spent hours filling scrapbooks with photos and sayings that inspired her.

Friends of Annie LeGere light a Christmas tree decorated in her memory last year in Elmhurst
Friends of Annie LeGere light a Christmas tree decorated in her memory last year in Elmhurst.
(John J. Kim, Chicago Tribune)

And she and her friends adored sleepovers — staying up late, doing each other's hair, pigging out on pretzels, pizza and popcorn and watching movies — so much that they held them as often as twice each week over the summer, her mom said.

On the night Annie fell ill, she and five of her friends were celebrating the end of summer, with school scheduled to open days later. The girls were sitting in a circle on the floor, playing Cards Against Humanity, when Annie became short of breath and called her mom, said Christina Sapata, one of Annie's friends.

Annie died Aug. 26 surrounded by members of her close-knit family, who were told by doctors that the exact cause of her severe allergic reaction might never be known.

"It was most likely food, but the thing is, we're basically making an educated guess," said Dr. Maureen Quaid, medical director of the Pediatric Critical Care Unit at Advocate Children's Hospital at Park Ridge. "Food, right now in this country, is the number one cause of anaphylaxis."

Anaphylaxis is the immune system's overreaction to a substance perceived as foreign or bad. In mild forms it can cause hives, swelling of the lips, tongue and throat, wheezing or coughing. In more severe cases, it involves a closing of airways to the lungs and loss of consciousness, Quaid said.

In Annie's case, her body's allergic reaction caused her air passages to quickly become blocked, depriving her brain of oxygen. Even after doctors stabilized her vital functions, the brain damage caused during the reaction became fatal, Quaid said.

Generations ago, severe food allergies did not exist in the quantities they do today. Today, research shows that a food-allergy reaction sends someone to the emergency room every three minutes, and every six minutes the reaction is one of anaphylaxis, according to Scott Riccio, senior vice president of education and advocacy for Food Allergy Research & Education, a nonprofit organization.

Medical experts have identified eight foods that account for 90 percent of all food-allergic reactions: milk, eggs, peanuts, tree nuts, wheat, soy, fish and shellfish. But they are still unsure why food allergies are more prevalent today than ever. Some theories being considered are environmental changes, evolution in bacteria found in people's digestive systems, and early or late introduction to certain allergens, Riccio and Quaid said.

What is undisputed is that epinephrine is an effective first line of treatment for an anaphylactic reaction caused by allergies. The drug enters the bloodstream and quickly reverses airway swelling and speeds the heart rate so blood can get to organs faster. There are extreme cases where a patient may need repeated doses, or the epinephrine may not work at all, but those are the exceptions, Quaid said.

In the first few days after her daughter's death, LeGere said she combed through the list compiled by Annie's friends of food they consumed that night — chocolates, popcorn, pretzels — all items Annie had eaten before.

Then LeGere decided to direct her grief elsewhere.

"I have to let that go. There's no way I'll ever know," she said. "I can't ask why anymore."

Instead she has devoted her energy to promoting allergy awareness and pushing for more EpiPens in public. Teens and community members have joined in the fundraising effort.

Classmates of Annie LeGere dance at a fundraiser
Meg Krull, 14, center and other classmates of Annie LeGere dance at a fundraiser called "Annie's Pink Christmas" at the Wilder Mansion in Elmhurst on Dec. 12, 2015
(James C. Svehla, Chicago Tribune)

At Annie's Pink Christmas celebration held at Wilder Mansion in Elmhurst earlier this month, girls dressed up in sparkly gowns and strappy sandals while boys sported pink ties and button-down shirts. The teens mingled, munched on sweets covered in pink frosting and turned in piggy banks filled with donations — some as much as $800 — that they had collected for To the Moon and Back.

A DJ pumped a Taylor Swift song on the speakers and LeGere smiled as the teens rushed to the dance floor.

"I know Annie's looking down and she's looking at all her friends and just loving it," the mother said with tears in her eyes. "I have to believe that she is."

10 Teachers Share How They Really Feel About Your Kids' Allergies

You’ll be pleasantly surprised at the responses teachers gave to a writer in regard to their students’ allergies. All were very concerned and want to be as educated as possible in order to keep their students safe. Respondents go out of their way to make sure kids with allergies did not feel excluded, and will remind parents to send special food if there is a field trip or other event planned. We hope all teachers are as dedicated as the ones quoted here! 

Teacher Discussing Allergies

10 Teachers Share How They Really Feel About Your Kids' Allergies

By Chaunie Brusie
January 13th, 2016

I live a life surrounded by teachers.

My mom, my aunt, several of my cousins, and my husband — all teachers. So aside from the fact that I have a handy phone-a-friend-for-math-help, I’ve also been privy to all the very real struggles and issues that teachers face.

Teachers, to me, are heroes. They don’t make a lot of money, they genuinely care about other people’s kids, and the level of stress that they face on a daily basis would be enough to send anyone home crying. The workload that teachers deal with is a lot, and when you add in IEPs, special needs, and other accommodations, it can be hard to keep it all straight.

Which is why I wondered how teachers really feel about dealing with allergies — a potentially life-threatening stressor — in the classroom. So I asked ten teachers to share their honest feelings about what they think about handling students’ allergies — and their answers may surprise you. (Note: some of the teachers asked to remain anonymous.)

1. They want more education.

“I think students in the classroom should receive education on allergy triggers, how to keep the classroom safe and free of allergens, and mild to severe allergy reactions. I wish our school provided more in-depth staff and student education of severe allergies to foods such as peanuts,” says Camilla Cook, a Medical Paraprofessional and Substitute Teacher at Rolland-Warner 6/7 campus in Lapeer, Michigan.

2. They know that allergies are not convenient.

No one goes into parenthood thinking, “Man, I wish my kids will have allergies!” And although parents may feel overwhelmed with the accommodations necessary, teachers aren’t expecting Easy Street when it comes to allergies, either.

“No one will say it’s convenient to [stay on top of allergies],” one teacher told me. “It takes a lot of writing letters, cleaning, communicating with parents, checking kids’ lunches, arranging seating charts, reminding, etc., but it’s part of our job [to keep] our students safe.”

3. They consider allergies just another accommodation.

Teachers are used to accommodating students on an hourly basis; to these everyday heroes, allergies = just another accommodation.

“As a teacher, your job is to teach each kid according to their needs,” says one teacher matter-of-factly. “Allergy-proofing your room is another way you accommodate the learning environment for your students who have specific needs to be able to learn.”

4. They feel you on “those” parents.

Unfortunately, not all parents understand the importance of keeping allergens out of the classroom, but teachers are on your side.

“As far as parents who are not on board, I would say that having open communication with them about the allergies present in the classroom (without singling out certain students or using their names) and the magnitude of the allergies can help them to understand that we are all just trying our best to keep all our students safe,” says one teacher.

5. They consider it just another part of the job.

“I really do think it’s part of your job as a teacher to make your classroom as allergy-proof as possible (and I’m not saying that just to be politically correct) … it’s worth the trouble it takes if you have a healthy class all year. A healthy class is a productive class!” states Mandy Lange, an elementary teacher in Lansing, MI.

6. They want you to address allergies at the appropriate time.

It may be convenient for you to wait until you see your child’s teacher in person or at school pick-up to start discussing their allergies, but it’s actually far more helpful to put your child’s allergy plan in writing, says one middle-school teacher and college professor.

“Bombarding teachers and swooping in during a curriculum night or back-to-school open house might seem like an appropriate time, but it’s very difficult for teachers to remember later what was discussed,” she explains.

7. They go out of their way to ensure your child feels comfortable.

“In middle school, I don’t necessarily address allergies with other students for a couple of different reasons,” notes one 6th-grade teacher. “The student who has the allergy may not be comfortable with others knowing. It’s better coming from them, especially at this age. They’ve been managing it, and chances are they are more informed about how to handle it than the teachers.”

8. They go out of their way to make your child feel included.

Almost every single teacher I talked to noted that they kept an extra stash of non-allergen snacks in their desk, just in case.

“Often when we have field trips or special events, I try to plan ahead so everyone can participate,” says one teacher. “For instance, a couple of years ago I had a student with a severe food allergy who couldn’t have pizza or candy, so I just made sure that I had something on hand that he could have.”

Other teachers keep in constant communication with parents before special events to give them plenty of time to prepare. “I send a note home a few days before the celebration, making parents aware of what is being served,” said one thoughtful teacher. “That way, if a parent wants to send their kid in with an alternate snack that’s safe for them to enjoy, it helps them to plan a little easier. I hate when kids are left out because of an allergy.”

9. The kids don’t miss food.

Contrary to popular belief that allergy kids are ruining everyone’s day by having food banned from school premises, teachers recognize that “it is easier to celebrate in high school without food,” explains English teacher Ruth Lang Stover from North Branch High School. “For example, extra points on a quiz or a free space on a BINGO, a two-minute cell phone use, or a one-minute down time at the end of the hour.”

“Food is a part of life and our culture,” says Tonya Redmon-Sherman, who is both an educator and a parent of a child with severe food allergies. “But I do not condone food in the class. Celebration can come in many forms; it does not have to be food. If everyone cannot eat the food, then it should not be served. Cross-contact, especially when every other child has eaten it, is a very serious problem.”

10. They are scared.

Even if teachers are given an overview of allergic reactions and trained on how to use an epinephrine auto-injector, let’s face it: they aren’t medical professionals.

“My number-one priority is to help keep my students healthy and safe,” says one teacher. “But it is nerve-wracking to be responsible for their medical well-being if something should happen to go wrong.”

It cannot be an easy task to be responsible for a child’s education and their health. And it’s not just about what they can do — it also comes down to the fact that they are required to keep track of what the other students are exposing to your children as well. “I really worry when it is a peanut allergy and if it is severe as I then have to monitor what others have and bring into the room,” confessed one teacher.

11. They know that allergies are more than skin-deep.

Although it never even occurred to me to think about it, your child’s teacher wants to know if your child had a bad reaction as a result of an allergy — because it could affect his or her learning.

“Something parents could do that would be helpful is to contact their child’s teacher to give a heads-up that something changed at home,” explained one teacher. “Many people don’t realize how external factors, that might not seem that major, often have an impact on student learning. So, if a student had a bad allergy flare-up over the weekend, it’s always nice to know that. We don’t need all of the details, but a simple ‘there was an issue, he/she should be fine, but if he/she seems off, this happened.'”

12. They want you to be very clear about the severity of the allergy.

One thing that several teachers mentioned is their desire to know the exact severity of your child’s allergy, so they know precisely what they are dealing with, especially considering teachers are already carrying a massive workload. For example, my 7-year-old loves to claim that she is “allergic” to oatmeal, and we’ve had to have several talks about how she can’t say that to people when she merely dislikes oatmeal.

13. They have more faith in your kids than you do.

No offense, mom and dad, but teachers have to put faith in their students to be mindful of classmates with allergies — with sometimes surprising results.

“When other students understand the potential outcomes of a bad allergic reaction, children are much more careful than you think,” explains Sarah*, a 26-year-old teacher from New York City. “One year, I had another student who was allergic to strawberries. I discussed it with my 2nd graders. Whenever a student had a strawberry in their lunchbox, they would move away from the student who was allergic just for the day. Sometimes kids are much more mindful to these serious situations than many adults make them out to be.”

14. They are frustrated with the lack of options.

“I wish that my school/district had a wider lunch menu for students who are allergic to certain foods,” said another teacher. “When we go on class trips, any student who receives free lunch from the cafeteria will get a peanut butter and jelly sandwich and milk. Students with specific food allergies (such as peanuts or dairy), will need to pack their own lunch for the trip instead of getting a free one from the lunchroom.”

15. They wish they knew.

The top concern that the teachers shared regarding your child and allergies was shockingly simple: they don’t always know that your child has allergies. One teacher noted that some parents simply forget to tell teachers, others assume they know, and still another talked about how hard it is remember each individual allergy when the only place they really see those allergies is in the student’s grade book.

“It actually happened today,” my mom, Nora, a high school math teacher, told me when I mentioned this topic. “My student ate a fruit snack and she is allergic to fruit. She said she thought she would be ok. She wasn’t. She started breaking out with a rash. I didn’t even know she had allergies.”

Disclaimer: The experiences, opinions, and suggestions recounted in this article are not intended as medical advice. They are unique to the family depicted and do not necessarily represent the “typical” experience of families with a child who has severe food allergies. Families should check with their healthcare professionals regarding the treatment of severe food allergies.

January Update for the Emergency Allergy Treatment Act

The Emergency Allergy Treatment Act (EATA) was submitted to the New York State legislature last year, but was tabled by the Assembly’s health committee and not brought up for a vote. Reliable sources have told us that meetings were held in December where a revised draft was written with language simplifying EATA. It may be ready for submission by the end of January, and since it was approved by the state Senate last year, we have high hopes it will be passed into law someday soon.

New York State Capitol Building

January Update for the Emergency Allergy Treatment Act

By Jon Terry
January 15th, 2016

Greetings from Jon Terry, the founder of the Allergy Advocacy Association. Concerning anaphylaxis, life-threatening allergies and epinephrine, reports from Albany suggest that the Emergency Allergy Treatment Act will be resubmitted to the New York State legislature early in 2016.

EATA authorizes the certification of persons to administer lifesaving treatment to individuals who have severe allergic reactions when a physician is not available and allows an authorized entity to acquire and stock a supply of epinephrine auto-injectors with a prescription. Authorized entities include restaurants, recreation camps, youth sports leagues, theme parks and resorts, entertainment venues and sports arenas.

The two sponsors of the legislation are New York State Senator Michael H. Ranzenhofer (R, C, IP) 61st Senate District and Assemblyman Tom Abinanti (D) Assembly District 92. Last year the Senate bill did pass with 62 affirmative votes; but the assembly bill was tabled by the health committee and was not brought up for a vote.

This past fall Assemblyman Abinanti and staff members of the assembly health committee continued to discuss revisions of the bill's extensive provisions. Due to the bill’s comprehensive nature the chairman of the health committee, Dick Gottfried, felt more time was required for further evaluation. He is reportedly concerned about proper statewide implementation of EATA once it becomes law. Mr. Gottfried has previously voted in favor of improved access to epinephrine in NYS schools via the Student Medications Carry Act signed into law last year. While the current legislation remains unaltered, anonymous sources have informed me that meetings held during December produced a revised draft with language simplifying EATA. It may be ready for submission by the end of January.

Despite last year's setback in Albany, I am cautiously optimistic that EATA will become law here in NYS sooner or rather than later. During 2015 more than two dozen states across America had entity stocking legislation on their agendas; currently 18 states have already enacted such laws including Florida, Minnesota and North Carolina. And New Jersey's new epi entity stocking law was enacted just this month.

Entity stocking is clearly the next step towards better protecting the lives of individuals at risk for anaphylaxis. We will continue our advocacy efforts through our program of awareness, alertness and action. The vision of the Allergy Advocacy Association is a clear and direct one. "Not another life lost to anaphylaxis - Not another life lost to ANY life-threatening allergies!" Best wishes!

© Copyright Allergy Advocacy Association.

NYS Announces Syringe Epinephrine Kit Program

We are pleased to report the Check and Inject Syringe Epinephrine Kit (SEK) program for emergency medical service personnel has been officially announced. You may recall last month’s article where we described a new pilot program in which many emergency medical services will be using Syringe Epi Kits. These less expensive kits enable EMTs of all levels, as well as paramedics, to administer epinephrine using a special syringe. Currently, only EMTs with advanced training can use the syringe and vial, forcing those with lower levels of certification to use the more expensive epi pens.

Epi Safe Syringe

NYS Announces Syringe Epinephrine Kit Program

Reporting by Janet Goldman
January 15th, 20016

After months of preparation the NY State Emergency Medical Advisory Committee (SEMAC) and the NY State Department of Health, Bureau of Emergency Medical and Trauma Services (BEMTS) have officially announced the Check and Inject Syringe Epinephrine Kit (SEK) program. Challenged by the rising cost of EAIs, SEMAC and BEMTS approved the SEK pilot program for all levels of emergency medical service in NY State. Formerly known as "Epi Kits," SEK requires the usage of a syringe and vial rather than an epinephrine auto injector (EAI) device by emergency medical service personnel. Helping to ensure proper dosage and efficiency, the syringes will be pre-marked with lines for each dosage level.

Each SEK will be a single-use sealed plastic container assembled by Bound Tree Medical Facility. It will contain vials of epinephrine and syringes marked with two dosage levels: 0.3 for adults and 0.15 mg for pediatric patients. Used by an increasing number of other states’ emergency crews, SEKs are significantly less expensive than EAIs. Unlike the cost of EAI devices which cost as much as $400, the cost of Syringe Epi Kits is well under $50 each. Besides saving money, the pilot program is also intended to increase the immediate administration of epinephrine in anaphylaxis emergencies. Most regions of New York’s 18 regional EMS Councils from all over the state will be participating in the project. Fifty-two agencies have already enrolled, including over 1,870 providers. The central administrators will be at the University of Rochester. SEKs will share the same expiration date, ending the project within 14 to 18 months.

Additional training has been designed by the program in both the recognition of anaphylaxis and the use of the SEKs. The instructors will be physicians, nurses or paramedics. Using a combination of lecture material and hands-on demonstrations, instructors will spend about 60 to 90 minutes for each set of trainees. To measure the students’ understanding, practice stations will be used to monitor how well the trainees perform their skills. After any utilization of the Syringe Epi Kits, the EMS provider will call and speak with a physician about the case. This real time oversight will assure the safety of the pilot project.

Please note that this program is intended ONLY for emergency medical service personnel. The Allergy Advocacy Association will continue to provide you with updated reports concerning the Demonstration Project’s progress and New York State’s final decision concerning whether to adapt the Syringe Epi Kits for all EMS crews.

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