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food allergy advocacy

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Food Allergy Advocacy in Schools

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Sending your child off to school is worrisome enough as a parent—but when your child has a food allergy, that anxiety amplifies. 

My daughter is highly allergic to peanuts—off the charts allergic. Three years ago, when she was in kindergarten, I frequently received calls from her school that she had experienced a topical allergic reaction. Given the severity of her allergy, and the fact that they sold PB&Js in the cafeteria, this didn’t come as a surprise.

Her school had archaic food allergy protocols and procedures in place, and didn’t seem to grasp the severity of the situation. Their cafeteria was effectively a minefield for my daughter!

You should know: I'm not the kind of person that accepts the things I can't change. I change the things I can't accept. And I couldn’t accept living in constant fear for my daughter’s life.  

Fast forward three years, and her school district now has a food allergy awareness program in place and is making considerable strides to keep children with food allergies safe. 

How did this come to be? A few things happened. 

First, I engaged the school nurse. When I initially relayed my concerns, her response was, "We have food allergy guidelines in place." Now, let’s be clear, these guidelines weren’t routinely followed or required—they were recommendations. I felt for her, because she truly didn’t seem to grasp the seriousness of the situation; in her defense, she grew up in a time when food allergies weren’t an epidemic. 

It was then I realized what was missing—a true understanding of what was going on. People don’t know what they don’t know! 

In my heart I know that no parent, teacher, or school nurse would ever do anything to intentionally harm my child, yet there seemed to be a serious lack of awareness around the severity of her food allergies. 

My first goal was to make sure the district removed PB&J sandwiches and nut products from school cafeterias. After that, I focused on promoting education and awareness within the schools, and with children and their families. We needed to foster an environment of inclusivity, which I felt was sorely lacking. 

I’ve learned that adults find change difficult, but children usually embrace it!

Change is usually most successful with smart, slow, and strategic execution. We published a series of educational articles in weekly school newsletters and integrated food allergy awareness and education into school events (e.g., PTA meetings, school assemblies, book fairs, harvest days, etc.). We also organized book readings and games to coincide with national Food Allergy Awareness Week

The children embraced learning how to keep their allergic classmates and friends safe, and in turn, educated their parents by sharing what they learned in school. Coming home from school with a sticker that said, "I kept Sophia safe today,” prompted their parents to ask about the meaning of the sticker, and often began a conversation about food allergies. If mom or dad was making a PB&J sandwich for lunch the next day, their children might say, "Don’t make me that! It’s not safe for my friend!"

There are eleven elementary schools within our school district. We piloted this program at one school, then another, and another, and soon our awareness and education program was implemented throughout the entire district! In the meantime, we collaborated with the district administration to update and rewrite the food allergy protocols and procedures, and built food allergy education into lesson plans. We also created a district-wide food allergy informational brochure for incoming and existing families within our schools. 

Our efforts weren’t met without resistance, and these achievements took time and patience. I’ve learned that to work collaboratively and effectively with schools and other parents, it’s important to be clear and explain the WHY. Why are we removing peanut butter from schools? Why is my daughter unable to bring in cupcakes for her birthday? From experience, once someone understands the WHY, they often embrace the change. In turn, they often become a food allergy advocate themselves! 

- Abbe Large 

 

Abbe Large is a Senior Vice President at Lenox Advisors. She has held leadership positions within her school district’s PTA and currently sits on her town’s education committee. Abbe is a minority investor in Allergy Amulet.

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Navigating Food Allergies as a Teen

Most social gatherings as a teenager involve food. School dances involve going out to eat with your friends before the dance, and eating snacks during the dance. Going on a first date often involves going out to dinner or to a movie theater, where food is always present. Birthday parties almost always involve cake and ice cream during the celebration. We even have a holiday every year to celebrate being thankful for a plentiful harvest: Thanksgiving. All of these gatherings involve some sort of interaction with food. 

When you have food allergies, however, these common social gatherings are not just a matter of socialization. They are a matter of survival.           

I’m a teenager that’s just trying to fit in and be as “normal” as everyone else. This can make speaking up and asking for an alternative food option a scary task. What if they say no? What if they force me to leave? Worst of all, what if I have a reaction? All of these questions fly through my mind when I’m invited to hang out with friends, extended family, or to any other social gathering.    

I used to “make plans” or say I was busy just so I could avoid the awkward first communication of “oh sorry I can’t have that.” Though I’ve had some extremely positive social experiences that have made it easier to manage my food allergies! I remember one birthday party specifically. I was talking to my friend’s mother about my allergy and how I was going to avoid the birthday cake. Out of nowhere, she surprised me with a 100-piece bag of Starburst. She explained that my friend wanted to make sure that I could enjoy his birthday even though I couldn’t eat the cake. 

Dating can also bring about challenging situations. My freshman year of high school I took a date to watch a varsity high school soccer game. It was half time and she was hungry. I had eaten before the game, in order to prevent getting hungry at the game and being tempted to eat something there. We went up to the concession stand and she ordered a Snickers bar. Because I have a peanut allergy, this was a very awkward situation. Before we sat down, I reminded her of my allergy and she felt so bad—but I felt even worse. It was our first date and I didn’t want to do anything that would scare her. She quickly ate her Snickers bar and washed her hands.

Dating often involves food. Inevitably you will end up in situations like picking a restaurant or a snack at a movie theater, which is usually a good time to explain your allergy (and explain your choice of snack or restaurant). If your partner truly wants to be in a relationship with you, they’ll understand why you go to the same Mexican restaurant every week: it’s a safe choice for you. 

As a teenager, I’ve learned to advocate for myself and not be afraid to reject food that doesn’t have a label or is “so delicious it’s worth dying for” (yes, I’ve had people that didn’t know I had an allergy say that to me). While our parents advocate for us when we’re younger, as a teen they’re not with us as often, and we have to learn to be our own advocates. 

Every year I attend FARE’s National Conference and I hear a familiar discussion about the dialogue between food-allergic teens and their parents. Teens often talk about how their parents watch over them closely, and how they want to manage their allergies independently. Parents often ask me how their child can become more independent, and to that I say that they should give their teenager more of a chance to self advocate. I’ve always taken responsibility for keeping track of my auto-injectors, asking waiters about my allergies at restaurants, and speaking up in situations when I don’t feel comfortable. Teens don’t always do those things in front of their parents because their parents do it before the teen has the chance to.

This is a two-way street that involves cooperation and trust on both sides. As dangerous as the world can seem for a teen managing a food allergy, most food-allergic teens have looked that danger in the face for their entire lives. It isn’t going to stop them from living life to the fullest. Sure there will be times of difficulty, but that difficulty is only temporary. 

The one thing I want everyone to take away from this blog is this: speak up. 

Don’t be afraid of any challenge that comes your way, food allergies or not. Through my food allergy advocacy volunteer efforts I’ve met senators, mayors, CEO’s, entrepreneurs, and other amazing people with inspiring stories. Many have said that an issue becomes more impactful when a teen speaks up about it. If a teen is concerned, shouldn’t adults be as well? Every obstacle you face and every challenge that you meet can be overcome. Your voice is a powerful tool, so don’t be afraid to use it! 

 

Daytona Hodson is junior in high school and has a life-threatening food allergy to peanuts. He’s on his high school debate team and he’s a member of FARE’s Teen Advisory Group. Daytona has contributed to articles and spoken on panels for both FARE and Spokin. 

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Managing Food Allergies at the Gym and Yoga Studio

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Food allergy management is not reserved for the kitchen, dining room, cafeteria, and restaurants. Food allergies follow you everywhere, from airplanes to offices, to places you would least expect—like yoga studios.

My favorite yoga teacher, who has a peanut-allergic son and maintains a peanut-free house, uses the yoga studio as her place to eat all the peanuts she can’t at home. I only learned about her son’s allergy because I spotted her spooning peanut butter right out of the jar and directly into her mouth before class one day. As a regular, there’s a good chance of her assisting me, and it is not unusual for her to lie right on top of students during a seated forward fold. 

Since we may be getting “intimate,” I knew I would have to tell her about my allergy. I explained that I was allergic to peanuts and would appreciate it if she either washed her hands or not assist me that day. Since she’s an allergy mom and understands the struggle, she was embarrassed that she had never thought of this as an issue when teaching. 

Yoga studios aren't the only place I’ve encountered my food allergies. They have shown up in locker rooms, the swimming pool, and on a marathon race course. I bet I’m not the only one who has spotted an allergen during a workout! 

As someone with many food allergies (peanuts, tree nuts, sesame, soy, and sunflower seeds, to name a few), I’ve gotten pretty good at managing them in public workout spaces. Below are my top tips! 

Your auto-injector is your number one workout buddy.

Having your epinephrine auto-injector with you at all times is a best practice no matter where you are or what you are doing. This is especially true for the gym. The last thing you want is someone scrambling to your locker—perhaps not knowing or forgetting the lock combo—and then rummaging through your things to find your auto-injector. Keeping it in a small bag with you is a convenient way to carry it from machine to machine. Activities in extreme temperatures, like hot yoga, may require an exception to this rule.

Have a water bottle that stands out.

Just like the yoga studio was my teacher’s go-to place for snacking on peanut butter, the swimming pool is where my husband eats peanut M&Ms. Besides not kissing, we do not share water bottles when he eats peanuts! 

While unlikely, you might share the same water bottle as someone else at the gym, and you don’t want to accidentally sip from the wrong spout! When it comes to your water bottle, make sure it stands out and that you always know where it is. If you bring along a bag for your epinephrine auto-injector, you can pop your water bottle in there! Or add stickers, a name label, or tie a ribbon around your bottle to ensure it’s unique. 

Clean what you can.

Wiping down surfaces at the gym is always a good practice—food allergies or not. 

Sometimes this isn’t always an option—take bouldering, for instance. I recall one time watching people shell pistachios and then going right back to the climbing wall. In these cases, you just have to use your best judgment.

Specialty equipment at a yoga or boxing studio can also have questionable cleanliness. In these cases, it is best to bring your own mat, props, and gloves. If you’re there for the first time, or can't bring your equipment, it’s a good idea to ask how they clean their equipment or request a newly-cleaned item. You may want to wipe it down yourself just in case 😁.

Let someone know about your allergy.

When working out alone, it helps if someone knows about your food allergies. Before any yoga class, I always say something to the instructor because I’ve experienced teachers lathering students with essential oils. 

Don't be embarrassed by saying something. I used to be, but really who is it harming? Nobody! 

Managing food allergies means you have to be a little more diligent when engaging in extracurricular activities, even ones that aren't food related. Taking simple precautions to mitigate risk is all part of life with food allergies and shouldn't stop you from hitting the gym!

What tricks do you use when navigating public workout spaces? I’d love to know! 

 

Kortney Kwong Hing is the allergy girl behind the blog Allergy Girl Eats. She has multiple food allergies (peanuts, tree nuts, sesame, soy, sunflower seeds and more), but does not let them stand in the way of enjoying food and exploring the globe. On the blog Kortney shares stories of life as an allergic adult, tips on managing everyday life with food allergies, and a few favorite allergy-friendly recipes. 

Kortney is also one of the co-founders of Allergy Travels, a website and online community that shares travel insights and inspiration for those managing allergies. 

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The 411 on the 504: School Allergy Plans Decoded

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Last month we covered the basics of kids and epinephrine. This month we’re bringing you the skinny on school management plans for your child’s food allergies.

Are you wondering about a 504? An IEP? Have we lost you? 

Don’t worry, we’ve got you covered. 

Setting Up the Plan

Most school districts have district-wide plans for food allergy management, treatment, and reaction prevention. Many states also offer suggestions for school districts on managing food allergies based on guidelines from the Centers for Disease Control and Prevention. To date, there is no federal regulation that standardizes these policies and procedures, so these policies vary between states (and often between school districts within each state). 

The first step in setting up an allergy management plan for your child is to reach out to your child’s school. Many schools will ask you and your child’s doctor to fill out an allergy and anaphylaxis emergency plan form, although this form can go by different names. This form covers what steps school staff should take in case the child is exposed to an allergen or if he/she exhibits symptoms of a reaction. The American Academy of Pediatrics published this template form for reference. Once submitted, the school nurse typically prepares an Individualized Healthcare Plan (IHP): an internal document that outlines the processes the school should follow in the event the child experiences an allergic reaction. 

Some parents go one step further and request a 504 plan. Section 504 is part of a federal civil rights law that protects individuals with disabilities and health conditions, including life-threatening food allergies. The law applies to all schools and programs that receive financial assistance from the U.S. Department of Education (so all public schools and some private schools). A 504 plan lays out how the school should prevent and respond to allergic events. If a 504 plan protocol is not followed, there are several dispute resolution options available for parents. 

To secure a 504 plan, a parent must contact the school district’s 504 coordinator, who works with school officials to determine if the child qualifies. This determination is based in part on medical history, so your doctor may need to provide the school with this information. If the child qualifies, the team will work together to determine what special accommodations and protocols must be followed. 

Notably, if your child has a disability and qualifies for an Individualized Education Plan (IEP), a separate 504 plan is not necessary. The child’s food allergy accommodations may be joined under their IEP. Also of note, in some non-religious private schools where 504 plans do not apply, parents may rely on the Americans with Disabilities Act (ADA) to ensure that the school implements a food allergy management plan for the child. 

School Policy Options

Since there are no national standards for food allergy protocols, policies vary widely between schools. 

According to a recent study surveying school nurses across the country, the most frequently reported policies include: training school staff to respond to allergic reactions and anaphylaxis, using epinephrine autoinjectors, and managing for cross-contact in cafeterias. Other policies commonly implemented include: community food allergy awareness events, designated lunch areas for children with food allergies, and food guidelines for classroom celebrations.

The least frequently reported policies were: allergen labeling information in cafeterias, food management policies for after-school activities, and school-provided stock epinephrine for field trips and off-campus outings. In light of the differences between school policies, parents should understand their school’s protocols before developing their child’s plan.

Words of Wisdom

Finally, we talked with a few food allergy parents in different school districts and asked them to share a few words of wisdom on these management plans:

- “Plans may be different within the same school system—as your child goes from elementary to middle to high school, you will want to revisit your plan. For example, once a child moves to a different school building, new protocols may be appropriate. Older children may also be allowed to self-carry epinephrine or antihistamines.”

- “Make sure your plan or school policies cover transportation to and from school if your child rides the school bus.”

- “Think about after-school plans for your older child, as middle and high school students often have plans with friends after school. For example: can they store their medicine in a school locker during the day–even if the school doesn’t allow self-carry–so that they are prepared to go to a friend’s house or activity directly after?”

We hope this rundown of plan options, food allergy management policies, and parenting wisdom helps you to better advocate for your child’s food allergy needs!

-      Susannah and the Allergy Amulet Team 

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