Family Food Allergy Foundation Memorializes 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.
Dining together with family and friends can be the best part of the holiday season. But if others are unaware of the dangers of anaphylaxis it can create some tense moments if your child has food allergies. Here are some great tips from Gina Clowes, the founder of AllergyMoms.com, on how to educate others while protecting your family.
A food-filled family gathering need not be a minefield for those with allergies. Here are six key steps to safe celebrating.
I grew up in a huge Italian family where love was spelled F-O-O-D. About a year after my son was diagnosed with more than a dozen food allergies, I hosted Christmas Eve. Every table of my house was filled with pasta, cookies and candy. But unlike past family gatherings, this was not a happy holiday.
One niece roamed the house leaking her bottle of formula everywhere; another toddler left a trail of Honey Nut Cheerios. My sister fed her baby a jar of green pea baby food – the very food that had caused my son’s most recent allergic reaction – and left a dirty spoon on my kitchen table. My home became a minefield.
Although I didn’t say anything, my family sensed my tension and anger. They watched me march behind them, picking up napkins, wiping down tables and cleaning up cookie crumbs before my allergic toddler could get to them.
It wasn’t long before my sister confronted me. “You’re so uptight. No one feels comfortable here anymore.” My emotions spilled over. How dare they be mad at me! They were being insensitive and endangering my son’s health. I didn’t speak to my sister for months.
That was over a decade ago. Today, I see things differently.
Back then, I expected my family to understand a lot more about food allergies than they did, and yet I never specifically explained to them what I needed. It’s our job to educate others on exactly what’s necessary to keep our children safe. We, not our relatives, have to establish boundaries and draw lines. Today, I put my son’s need for safety and inclusion and my own need for keeping a manageable stress level at the top of my holiday priority list.
Over the years, I’ve learned that my story is not unique; many parents have similar issues with family members. So here are my tips for creating safe boundaries in your home and theirs during the holidays:
Essential Tips for the Holidays
Ask and you shall receive. People don’t like to come to a holiday celebration empty-handed, so address your concerns up front by saying something like, “You don’t need to bring anything, but if you plan to bring food, would you let me know? Nathan has food allergies and I want to be able to serve what you bring.”
Safe haven. Don’t feel obligated to serve unanticipated food gifts, like the nut rolls, chocolate candies and cheese logs that are so common during the holidays. Put the unsafe offerings away, and use the situation as an opportunity to politely explain to guests why you choose not to serve these foods in your home.
Model home. When guests are helping you in your kitchen, take the opportunity to educate them and build awareness. As you remove cookies from the pan, explain that desserts and candies are the foods most associated with severe allergic reactions and that even invisible traces can cause a severe or even fatal reaction.
Tag team. Toddlers and preschoolers move from room to room quickly. Have a trusted adult’s eyes on them at all times. Take turns with your spouse or a trusted friend so you can enjoy your meal or a conversation, too.
First in line. At another’s home, discreetly ask your hostess if your child can be served first if there is a buffet. This way, if there are a few “safe” items, you won’t have to worry about guests cross-contaminating them with shared utensils.
Just say no. Teach your child how to politely decline food offered by well-meaning adults. When my son was little, our rule was: You can only take food from Mom, Dad or Grandma.
It can be hard to ask for what our child needs. Others judge us or say we’re going to extremes, and we don’t have the liberty of “proving” what can happen if they make a mistake. Ask with kindness and a positive expectation; anticipate mistakes, as they will occur; and model for your child how to come up with a Plan B or Plan C.
Rather than spending a holiday sad or angry, ultimately, you want your child to be empowered to stand up for himself, nicely, to make things right. So model this for your child this season, and show him how to have a happy holiday!
Gina Clowes is a certified master life coach who specializes in the needs of parents of children with food allergies She is the founder of the online support groupAllergyMoms.com, serving thousands worldwide.
There are hundreds of thousands of people in the U.S. that have a life-threatening sesame allergy. Because sesame is not currently considered a major allergen under federal law, it is not always listed in the ingredients on food labels. Rather, it can be hidden is such words as flavorings, natural seasonings or spices, forcing people to have to call the manufacturer to find out for sure. A recently introduced Food Labeling Modernization Act of 2015 would require sesame to be placed on the list of major food allergens, leading to regulations defining how sesame must be disclosed on food labels.
Included in the act’s provisions, which primarily seek to give consumers easy-to-understand labels on food so they can make healthy choices, is Section 8, which would require sesame to be placed on the list of major food allergens. That, in turn, would compel the Secretary of Health and Human Services to implement a final regulation no later than three years after enactment for determining how sesame must be disclosed on food labels.
Section 9 of the proposed legislation goes one step further and requires that, within three years of enactment, signs listing the major food allergens be placed adjacent to non-packaged foods being offered for sale at retail outlets.
Currently, only what are referred to as the “Big 8” allergens — milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat and soybean — must be listed on food labels in clear, easy-to-understand language. That list hasn’t been updated since 2004.
While at that time, the foods on the “Big 8” list accounted for 90 percent of the allergies in the U.S., sesame has increasingly become what many refer to as the “ninth major allergen.”
Some scientists say that the likely reason is that more Americans are eating what could be referred to as “exotic” foods, such as hummus (a popular spread or dip made primarily from chickpeas, which are also known as ganbanzo beans) and halva (a popular dessert in Asia, Africa, and Eastern Europe).
A quick look at recipes for these two foods reveals that they contain tahini, or sesame paste, as a main ingredient. (Other names for sesame and related products are “benne,” “teel,” “gingelly oil,” or “til oil.”)
Sesame oil has also become a popular cooking ingredient, and sesame is often used as an ingredient in vegetarian burgers.
Why so confusing?
The problem with this is that even people who know they’re allergic to sesame don’t always know the other names for it, nor do they know that sesame can be hidden within such vague labeling terms as “natural seasonings” or “spices.”
The CSPI report also revealed that of the 19 major food manufacturers in the U.S. that were contacted, only three — Kraft, General Mills, and Mondelēz — voluntarily labeled sesame on their products. And CSPI found that some companies that don’t voluntarily label it will provide information to consumers, but others won’t even respond to requests for sesame information.
Petitioning for change
In November 2014, CSPI filed a Citizen Petition asking that sesame seeds and sesame products be regulated the same way as other major allergens. The petition includes an appendix with letters from several parents of sesame-allergic children explaining why better labeling is so important for their families.
For those with an allergy to sesame, accidentally consuming it can trigger “life-threatening anaphylaxis,” CSPI says. Other symptoms include breaking out in hives, developing a swollen tongue, and having difficulty breathing.
In a news release about the petition, CSPI highlighted the case of a 10-year-old boy in Virginia who was rushed to an emergency room after eating a restaurant meal despite his parents getting the assurance of the staff before ordering that the meal contained no sesame seeds.
That boy’s father, Brian Heller, launched a petition on Change.org in October 2014 asking the U.S. Food and Drug Administration (FDA) to treat sesame as a major allergen. More than 7,500 supporters have signed it.
“Most pre-packaged breads, buns, rolls, bagels and other baked goods do not say anything about sesame on the label,” Heller stated in his petition to FDA.
Becoming more common
According to the CSPI report, some physicians have noticed that sesame allergies have become far more common, “even outpacing other common allergic reactions.”
“They’re now clearly one of the six or seven most common allergies in the U.S.,” he said, adding that “it’s remarkably common to see sesame allergy and to see severe reactions to it.”
Wood estimated that, in 2010, sesame was the fourth or fifth most common allergy in his patient population of 4,000 children with severe food allergies. And while food allergies are on the rise generally, he said that the sesame allergy “appears to have increased somewhat more than the others.”
Because of that, she said, sesame can hide in terms such as “natural flavor.” People with a sesame allergy would need to call the product manufacturer to find out whether “natural flavor” contained sesame before purchasing it.
“Even traces of an allergen can trigger severe allergic reactions in some people,” Mitchell said, “so it’s important for people with a sesame allergy to know if sesame is in a product, or if a product is made on equipment shared with sesame.”
According to the CSPI report, studies show that even amounts as low as 100 mg (approximately 1/50 of a teaspoon) of sesame-derived ingredients can provoke a dangerous reaction, while a 30-mg reactive threshold has been observed in some individuals.
Congress is listening
Citizen petitions, along with growing consumer concern and awareness about sesame as an allergen, have caught the attention of some members of Congress. In June, U.S. Sens. Chris Murphy (D-CT), Richard Blumenthal (D-CT), and Edward Markey (D-MA) sent a letter to FDA calling for a mandatory labeling rule for products containing sesame, stating that the agency needs to do this to help protect the health and safety of consumers.
“Without required uniform labeling of the presence of sesame, consumers with this serious allergy have no way of protecting themselves or their family members from its potentially life-threatening consequences,” the letter stated.
The senators pointed to the lack of FDA rules requiring manufacturers to disclose the possibility that traces of sesame can be introduced through production of an array of food items, and they urged the agency to address this issue as well and come up with wording so consumers can be informed of the possible presence of the allergen.
The letter also asked FDA to consider adding corn and mustard to the list of major allergens.
Allergen laws in Canada, the European Union, and Australia require that sesame and sesame-based ingredients be labeled on packaged food.
An added push
Just this past week, four members of Congress — U.S. Reps. Frank Pallone Jr. (D-NJ) and Rosa DeLauro (D-CT), and U.S. Sens. Richard Blumenthal (D-CT) and Edward J. Markey (D-MA) — introduced the Food Modernization Act of 2015, which includes the provision calling for sesame to be included as one of the major allergens and to be clearly labeled on food items containing it.
“The push for sesame labeling is finding supporters in Congress,” Laura MacCleery, CSPI’s chief regulatory affairs attorney, told Food Safety News in an email.
She said that the proposed addition of a requirement for sesame labeling is “good news because our estimates are that between 300,000 and 500,000 people in the U.S. have a sesame allergy, which can be life-threatening. Because sesame is not considered a major allergen currently under federal law, but can be hidden in flavorings and thus omitted from the ingredient list, it (the food-labeling act) represents progress.”
As for the fate of the bill, MacCleery said that the organization is working to gather co-sponsors in both the House and Senate.
“Like all legislation, the items in the bill are part of an ongoing conversation between Congress and the federal agencies concerning their priorities,” she said. “We hope that FDA will see the interest in Congress in all these items, including sesame, and order its docket accordingly.”
She described the proposed bill as a nice step forward for labeling on many fronts, including pushing the government to require front-of-package labels that would clearly indicate the healthfulness of a food.
“Consumers are showing keen interest in healthier products, and better labeling is a natural step in the evolution of the food industry,” MacCleery said.
Food labeling reform
The goal of the Food Labeling Modernization Act of 2015, according to the sponsors, is to minimize confusing and misleading information that consumers encounter on food packages. It addresses front-of-package labeling, misleading health claims, and requiring updates to the Nutrition Facts label and the ingredient list.
“When families make the effort to eat nutritious, healthy food, the labels on food products should help them make the right choices, not confuse or mislead them,” Pallone said, pointing out that healthy eating is especially critical to combating the growing epidemic of childhood obesity.
In an effort to help consumers select healthy products, the Act’s signature initiative will direct the Health and Human Services Secretary to establish a single standard front-of-package nutrition labeling system in a timely manner for all food products required to bear nutrition labeling.
“When ‘whole grain’ waffles can be made with white flour, and ‘all natural’ ingredients can contain synthetic high-fructose corn syrup, it’s clear our food labels are due for a makeover,” MacCleery said.
A journalist by trade,Cookson Beecherspent the past 12 years working as an agricultural & environmental reporter for Capital Press, a four-state newspaper that covers agricultural and forestry issues in the Pacific Northwest. Before working at Capital Press, she was the editor of a small-town newspaper, the Courier Times, in Skagit County, Wash. She received her B.A. in political science from Hunter College in New York City, and before moving West, she worked for publishing companies in mid-town Manhattan. In the 1970s and 80s, she and her family lived in North Idaho, where they built a log home and lived a “pioneer life” without running water and electricity for almost ten years. She currently lives in rural Skagit County of Washington State.
Did you know that only 17 states require every ambulance to carry epinephrine? Fortunately in New York State, all ambulances carry epinephrine and are staffed with crew members who can administer the drug to patients, regardless of whether they have a prescription. But currently, only EMTs with advanced training can use the less expensive syringe and vial, forcing those with lower levels of certification to use the more expensive epi pens. Therefore each ambulance must stock both. In a groundbreaking pilot program, many emergency medical services will be using Syringe Epi Kits, where EMTs of all levels as well as paramedics can administer epinephrine using a special syringe.
By Janet Goldman, staff writer, Allergy Advocacy Association December 10th, 2015
In our e-newsletters this past summer, the Allergy Advocacy Association explained the usage, effectiveness and perspectives towards Epi Kits, a new alternative to epinephrine auto-injectors (EAI) for Emergency Medical Service (EMS) crews. Unlike the auto-injectors, Epi Kits require the usage of a syringe and vial. Recently, we’ve investigated the efforts of New York’s EMS to adapt this technique.
To treat cases of dangerous allergic reactions known as anaphylaxis, all New York ambulances carry epinephrine and are staffed with crew members who can administer the drug to patients, regardless of whether they have a prescription. New York’s Bureau of EMS requires this provision. Not all states provide such accommodations. According to Dr. Michael Dailey, Medical Director for the Regional Medical Organization in Albany NY, “only 17 states require every ambulance to carry epinephrine.”
To administer the epinephrine, Paramedics and advanced EMTs can use a syringe and vial. However, the lower level EMTs are not qualified to use syringes; they need to use the EAIs. Not knowing if the ambulance will have a Paramedic or an EMT, the ambulances need to be equipped with EAI devices. This requirement has led to significantly high amounts of wasted funds on unused EAI devices. Dr. Dailey says that ambulances usually need a minimum of 2 of each size EAI device in case of mistakes.
Challenged by the rising cost of EAIs, a team of medical directors including Dr. Dailey from REMO and Dr. Jeremy Cushman from University of Rochester are conducting a Department of Health approved pilot project with Syringe Epi Kits for all levels of EMTs. The central administrators will be at the University of Rochester. Each Syringe Epi Kit 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. Dailey explained that the epinephrine can’t be pre-loaded into the syringes.
Used by an increasing number of other states’ emergency crews, Syringe Epi Kits are significantly less expensive than EAIs. EAI devices cost as much as $400 while the cost of Syringe Epi Kits is well under $50 each. Dailey expects that “... agencies may save close to $1,000 per responding EMS unit per year.”
Syringe Epi Kits require usage of a syringe and vial. Helping to ensure proper dosage and efficiency, the syringes will be pre-marked with lines for each dosage level. All levels of EMTs will be responsible for drawing the epinephrine from the vials. Regarding administration time using Syringe Epi Kits, Dailey noted that the time required is relatively brief; “the time difference between using an EAI device and a Syringe Epi Kit will not make a difference in saving a life.” The physicians of the State Medical Advisory Committee that approved the program believe that the Syringe Epi Kits will be safe.
The safety of Epi Kits’ has already been demonstrated in several other state; ten states allow vial access by EMTs. Additionally, 13 states have instituted programs to train their Basic EMTs to use ampules or vials and syringes and 7 more states have expressed an interest in the training.
Besides saving money, Dr. Dailey hopes to find increased administration of epinephrine. He notes that anecdotally EMTs may be reluctant to use the EAI devices because of the spring and the sudden deployment. He explained that EMTs have sometimes been injured from misuse. Additionally, Daily said that EMTs have sometimes not held the EAI device to the thigh long enough to allow adequate medication administration.
To prove the safety and efficiency of this alternative resource, the Regional Emergency Management Organization has designed a demonstration project. Beginning in 2016 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 enrolled, including over 1,870 providers. The central administrators will be at the University of Rochester. Using custom syringes, the Syringe Epi Kits will share the same expiration date, ending the project within 14 to 18 months.
To authorize usage of syringes by EMT basics, additional training has been designed by the team in both the recognition of anaphylaxis and the use of the Syringe Epi Kits. 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 this pilot project.
Beginning in 2016 most regions of New York’s 18 regional EMS Councils from all over the state will be participating in the Syringe Epi Kit project. Thus far, fifty-two agencies have enrolled, including over 1,870 providers. The Syringe Epi Kits with the custom syringes will share the same expiration date and the project will end within 14 to 18 months.
The Emergency Medical Services of New York State have established an impressive service record for meeting the needs of those with severe allergies. "Equipping our responders to treat anaphylaxis emergencies is profoundly important,” says Dailey, “and Syringe Epi Kits will allow us to do this with fiscal prudence and patient safety." 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.
Michael W. Dailey, MD, is an associate professor and Chief of the Division of Prehospital and Operational Medicine in the Department of Emergency Medicine at the Albany Medical College. He serves as medical director of the Regional Emergency Medical Organization.
Jeremy T. Cushman, MD MS, is an associate professor and Chief of the Division of Prehospital Medicine in the Department of Emergency Medicine at University of Rochester. He serves as medical director of the Monroe Livingston Region.