How to Become a Food Allergy and Asthma Advocate

1.  Be prepared.

Team up with your healthcare provider to create a written Emergency Care Plan (ECP). All children with allergies and asthma should have one. This very important document should outline your child's allergy in detail as well as the type of reaction your child has when exposed to an allergen. 

A complete ECP should include information on your child’s diagnosis, the symptoms he or she might exhibit, and most importantly, how caretakers should respond. Provide a copy of the ECP to your child’s teachers and/or caregivers and review it with them so they can properly respond to an emergency if it arises. The school can keep this file on record and reference it as needed throughout the school year.

For severe allergies and asthma, your family can also consider a 504 plan.³ A 504 plan is part of the Americans with Disabilities Act (ADA) and is a contract with your child’s school or daycare promising that the facility will accommodate for disabilities. According to the ADA, food allergies and asthma are classified as disabilities, and your daycare center must accommodate your child's needs when it comes to his or her allergy. Accommodations can include adopting an allergen-free menu, removing old rugs, and/or allowing your child to use inhalers during class.

Important: Since allergies and asthma can evolve over time, the ECP and 504 plan should be reviewed as new triggers or sensitizations are diagnosed. Reactions can also vary. Just because a child’s previous reaction was mild does not mean that the next reaction will be mild.

2.   Be informed.

Asthma emergencies and food allergy emergencies are different and should be managed differently. In addition, every child is different. After my son Elijah was mistakenly given a grilled cheese sandwich, a daycare worker thought he was experiencing an asthma attack and not an allergic reaction, which led to his death. My son Eli sometimes has a tightness in his chest with his asthma, but not necessarily wheezing. Going over his emergency care plan helps ensure his teachers know what to look out for and how to identify an emergency situation.

Because the symptoms of a food allergic reaction and asthma can be mistaken for each other, the responses by caregivers can be life-or-death decisions. They can mean that life-saving epinephrine isn’t administered or an inhaler isn’t provided.

That’s why it’s so important to teach your kids how to talk about their allergies and asthma. They don’t always have the language needed to verbalize their symptoms, but it’s important to work with your children to make sure that they can communicate any concerning symptoms to the adults in charge.

3.  Be proactive.

It’s easy to feel prepared in a known environment such as your home or even your child’s school. But what happens when children leave those controlled environments? The power of your advocacy keeps your children safe even when you’re not there.

Whether it’s a class field trip or a birthday party, be upfront about your concerns and the accommodations you need met for the safety of your child. It's essential that everyone around understands exactly how severe your child’s allergies can be. No one wants to be “that parent,” but when your child’s life is on the line, you’d be amazed at how easy it becomes to ask for what you need.

Discuss the precautions that need to be taken in order to keep your child safe, and have a plan for what to do in the event that your child is exposed to an allergen.

Schedule a meeting to go over your written food allergy plan with all the adults who will interact with your child. Be prepared to thoroughly discuss your child’s food allergy plan. If your child is old enough, it may make sense to have him or her take part in the meeting to better understand the precautions that will be taken to keep him or her safe.

4.  Be brave.

This might feel like a no-brainer, but I cannot emphasize enough how important it is to make sure your child always has access to emergency medication.

Asthma and food allergies are manageable conditions, but it’s very important to always consider the possibility that your child may need emergency medication. The thought of anaphylaxis can be terrifying, but it's important that you're fully prepared in the event that your child experiences such symptoms. Your bravery and preparation can get your child and related caregivers through that situation. As an advocate, you’ll be the leader that all your child’s caretakers look to. So in addition to the information and treatment plans, share your bravery and passion with the adults in your child’s life so that they can feel empowered to be champions for your child’s safety.

5.   Be collaborative.

Don’t do this on your own. There are other families like yours who are challenged by allergies and asthma. Lean on them and allow them to lean on you. Together you’ll become stronger. Here are a few examples of groups you and your family can reach out to for support:

Family and Neighbors
Sleepovers, parties, and visits to Grandma’s house come with risks for your child. Carefully going through your child’s ECP with everyone close to you can improve the chances that any emergency will be handled successfully. They should all know how to recognize an emergency, how to administer rescue medication (e.g., an Epi-pen or albuterol), and who to call.

Healthcare Providers
Your child’s healthcare provider is a key resource for understanding what’s going on in your child’s body when exposed to an allergen, what that allergen is, and what to do when your child experiences symptoms. Take your provider’s advice, learn it well, and spread the word to your family and friends. Your child’s doctor should also be learning from you. Information should flow freely in both directions between you and your child’s provider.

Patient Support Organizations
There are organizations and groups whose primary goal is to promote as safe and as normal a life as possible for families like yours. Two that come to mind are the Food Equality Initiative and my foundation, the Elijah-Alavi Foundation. Both focus on providing food safety and security to families that have members with food allergies and intolerances. Do your research to see which organizations are most active in your community so that your family can benefit from their resources. As an advocate, you can help to boost the impact of these organizations by donating, fundraising, and/or offering your passion to become a volunteer or local champion.