Kayleigh Peters is a 17 year old who decided to share a few thoughts for parents of little ones with food allergies in a Facebook group. Her post went viral in the food allergy community and was shared immediately. It is honest, heartfelt and so true, and it shines a light on food allergies and what it teaches us.
Meet Kayleigh, one amazing high school girl:
“Hi, I’m a 17 year old who has lived with a severe (as in contact and airborne reactive) allergy to peanuts since I was born.
Later I added soy and tree nut, and I am now peanut, treenut, soy, lentils, beans, peas, and wheat allergic.
I know that some of parents on this page are just now becoming introduced into the severe allergy world, and I want to offer some reassurance from the child perspective. I went to a public elementary school. I was given a “peanut-free table” at lunch even though on Thursdays the cafeteria served PB&J sandwiches. I ended up in the Nurses office every Thursday. I wasn’t able to play on the playground because of the contact, but still went to class with all the other children.
Throughout my elementary school years I became very close with the school nurse, but I never used my Epi at school even if I know I probably should have. The first time I used it I was 8 years old and I was at a birthday party. I ate peanut butter cup ice cream and within 5 minutes I couldn’t breathe. My parents weren’t there and the friends parents had to give me the Epi and call the ambulance.
This was probably the most terrifying moment for my parents when they got the call. But, I want to tell all of the parents out there that I turned out okay. I was raised in the time before the severity of allergies was understood, but I was still able to live my life.
Severe allergies are scary. I know this as well as anyone. I also have severe asthma. I’ve been in and out of the hospital all my life.
Yes, it’s harder for me to go out to eat or go on the same adventures that the other kids my age go one, but I still live my life.
Don’t let allergies hold you back or hold your child back. Everyone has obstacles in their lives.
Those of us with allergies have to learn til read labels, advocate for ourselves, inform others about who we are, we learn to scan crowds for candy bars being eaten by others, we learn to wipe down seats and tables, we learn to answer weird questions like “what happens if I eat it then lick you?”, we learn how nice the EMSA people can be.
Everything is a learning experience. But we can do it. Do not feel that you have to seclude yourself from the world because of you or your child’s allergies. Yes, this world is scarier when you have allergies. Yes, there are many many people out there who do not understand what we have to go through. But it is our job to not give up. We have to educate those around us. We have to keep living.
I just felt that sometimes that sort of thing needs to be said.
-From a girl who has lived with severe allergies and asthma all her life and has still gone to France for 2 weeks without her parents, dozens of road trips, public schools, airplanes, restaurants, and is going to Bangladesh in a month.
It’s going to be okay. It’s a scary world, but you are all strong. Your child will learn so much. They will be strong, independent, self-advocators.
You can do it.”
Written by Paul and Catrina Vonder Meulen with an introduction from Robyn O’Brien
Nine years ago as we launched AllergyKids, we received an email from father who had quite literally just lost his 13 year old daughter, Emily, to an allergic reaction. It was one of the very first emails that we received, and it immediately grounded this work in a commitment that we would never be able to shake.
AllergyKids site could not have been up for more than a handful of days when his email came in. ”I wish I had known about you earlier….” he wrote, and then shared one of the most heart-aching stories we have ever received.
Emily’s story took hold of our hearts and inspired our mission. In the years since, when we wavered out of fatigue or fear, we kept going because of families like Emily’s.
In the weeks, months and years that have followed since he first reached out, she has been part of our work and courage here at AllergyKids every day.
But, her story is not the only one. In the years since, there have been other parents who have reached out, too many of them, and I have looked into the eyes of too many parents who have lost their children.
Their memories and the unconditional love power the work that we do at AllergyKids beyond anything imaginable.
It has been nine years since Emily died. She would be turning 23 this year. And her story is a testimony of love and courage that has inspired countless others. Her favorite saying was “Live, Laugh, Love.”
And so we wanted to take this opportunity to once again share her story, as it originally first appeared on the AllergyKids site seven years ago, in the hopes that families everywhere can learn how to protect the health of children with asthma and allergies from cross-reactivity and cross-contamination.
As shared by Emily’s parents:
Emily’s Story and Our Message
When Emily was about two years old, Paul gave her a peanut butter cracker, almost immediately she started to fuss and rub at her eyes and start to develop hives. He gave her Benadryl and the allergic reaction calmed down. It was only after Emily’s death and subsequent research that Paul realized that this was when Emily’s immune system started building antibodies to fight off nuts.
After this initial exposure to nuts, Emily’s body developed its own protective warning system. If she came in contact with a food that had been exposed to nuts, she would have a tingling sensation on the back of her tongue, she would immediately spit the food out and then to protect itself, her body would vomit trying to expel whatever the offending allergen was. It was that reaction that made us comfortable with this allergy. She knew what she could and couldn’t eat. If kids brought snacks into school and they couldn’t tell her if it had nuts in it or not, she wouldn’t eat it. If they said it was free of nuts, she would still test it by putting it to her lips and touching it with her tongue. If she didn’t have a reaction, she knew it was safe.
I think you really want to know more of what happened that day, but I needed to let you know why I was so unprepared for what happened on April 13th. Elena (10), Emily and I had gone shopping that day for a graduation dress at a mall here in Cincinnati. After buying her dress (which she wore out of the store) we stopped to have lunch at about 2:50 at the mall’s food court. We decided to have a sandwich at a place that we had eaten before (we considered it a “safe food” restaurant) because Emily, in fact, had eaten this very same sandwich many times before with no problems. Their website even shows that it is peanut-free except for two of their cookies. After having lunch, we walked through a new t-shirt shop where Emily fell, tripping over her shoes, and landing on her bottom. She laughed and got right back up. We continued shopping, going to a store where we were going to get Emily’s ears pierced. While we were in this shop, Emily mentioned that she was afraid she might have messed her underwear when she fell and wanted to check it out. She came back about 5 minutes later, did two puffs of her inhaler, telling me that she felt hot and did her face look red. I told her no, but maybe we should leave. She said that her new dress felt tight and that she wanted to change her clothes. I said fine. She took her clothes and went to the bathroom. Elena and I stayed at the shop looking at “girly” stuff.
A few minutes later, I got a phone call from a girl in the bathroom asking if I have a daughter Emily and that she was having trouble breathing. Elena and I rushed to the bathroom where we found Emily gasping for air. She tried to do her inhaler again, but I could tell from looking at her that this was not good. The whites of her eyes were completely red and her normally pink cheeks were white. I immediately called 911. Emily had enough air to ask two questions. Emily became disoriented and wandered into the hallway. I had her lay down and she passed out. A woman passing by and I started performing CPR while Elena was on the phone with 911. The woman that was helping me said that Emily was O.K., and another woman said she felt air coming out of her nose. To me, Emily was not O.K., she was blue. Then I heard the strangest sound come out her mouth. People later tell me it was her death-breath. 911 had not shown up yet. Emily was taken to the hospital where they continued CPR. I arrived maybe 10 minutes later where the doctors told me they could not get her heart to start. They had finally got the breathing tube in the right spot, but they had given her all the medicine they are allowed to jumpstart her heart plus more, with no success. They were telling me my daughter was dead. It was 4:20. I believe Emily passed away in the bathroom hallway at the mall, which would have been around 3:45.
To answer your questions:
Did she have an Epi Pen with her? If so… Was it administered immediately?
NO, I did not have an Epi-pen with me. Unfortunately, if I did have an Epi-pen with me, I don’t know if I would have known to use it. I thought Emily was having an asthma attack because of her fall. I didn’t know that what was happening to her was associated with food. She didn’t have the tingling on her tongue, she didn’t vomit, it was a safe food (so we thought).
What did she have to eat at the Deli?
Emily had the Sweet Onion Chicken-Teriyaki Wrap. We knew it contained soy sauce. This particular deli did not make peanut butter and jelly sandwiches. We still don’t know where the trace amount of peanut came from. Unfortunately, the coroner and the investigator can’t prove anything at this moment, but because her reaction was so rapid and violent, the coroner has no other option but to point to the last meal Emily ate. Somehow a trace amount of peanut cross contaminated the sandwich she had eaten. We are still waiting for lab results – until then the findings are inconclusive.
How quick was her reaction?
We ordered around 2:50 and were done eating about 3:10. My best guess is that around 3:20 is when she started feeling hot and went to change her clothes. I called 911 at 3:26 and I believe she was gone around 3:40. The doctor’s pronounced her dead at 4:20.
Did she have any close calls before her death from reactions to something she had eaten?
NO, she did not have any close calls before this incident. Paul and I were in a comfort zone counting on Emily’s internal alarm system and the fact that she knew what she could and couldn’t eat, while we were blind to the fact that she was still very much in danger. Please understand, Emily was terrified of the Epi-pen and was diligent about asking questions about food preparation and ingredients. She did not want to be stuck with the Epi-pen. That’s what makes this all the harder to understand, Emily was her own advocate.
Your child is at a wonderful age, you can still control what they eat, you are watchful to make sure they don’t put the wrong thing in their mouth, you are their advocate. During this age, you can learn what the symptoms of anaphylactic shock are, you can develop a plan in case of an emergency, and go over and over what the plan is with friends and family so, God forbid, that emergency comes, you don’t think, you react.
As your child gets older, and they become more independent and responsible, don’t relax! According to FAAN, children between the ages of 10 and 19 are at a much higher risk of fatality. It defies logic, because you think now your child is at an age where they know and understand the dangers of their allergies and they will not take a chance. But what you don’t know or think you know is what can take their life so quickly. It is almost as if every time you eat prepared food, your child has a gun pointed at their heart. We don’t want to scare parents, but we want you to be scared, so that you stay vigilant in protecting your child.
I know this may sound irresponsible but please read it for what it is, learning lessons. As a learning lesson, my family would eat shelled peanuts on the couch. When they were done, Emily and I would go into the living room and vacuum the couch and the carpets. I wanted her to understand that she has to protect herself and that she can’t count on others to be as diligent as she had to be. Another time, we were taking a flight to San Diego. At the time, they still served peanuts on the plane. I had Emily wipe down the fold-down tray and arm rests in case the person who sat there before her ate peanuts and the residue remained on the surface.
The most bizarre part of this past 14 years is that I don’t think I understood that Emily could die. I thought she would get hives, swelling, asthma attacks, or really sick, but never in all of my thoughts did I ever think of death. Why didn’t that ever cross my mind? Did I not want to think that was a possibility? I now look at a lifetime of guilt, wondering how I could have done more. Please don’t ever feel you are being too protective when it comes to the health of your child and if someone tells you to relax, tell them Emily’s Story.
Learn more about Emily as the Vonder Meulens share “What We Wish We Knew“, including the potential risk that soy may pose for those with peanut allergy and how anaphylaxis can look like asthma by clicking on What We Wish We Knew as seen on www.foodallergyangel.com
Written By Daniella Knell for SunButter
Sending your child with food allergies off to school can be overwhelming. Trusting others to keep your kid safe is probably your #1 priority! For me, educating myself and others was the only way I could create a safer learning environment for both my children and their caregivers.
As food allergy parents, we constantly wonder, “What if something happens?” In my opinion, a more productive question is, “Does the person taking care of my child know what to do if and when something happens?”
It is all about education.
That’s the key to making sure that your answer to the above question is, “Yes, my child is in good hands.” When people don’t understand food allergies, they don’t know how to protect people who have them. The first step is educating—educating yourself, educating your child, and educating others. This guide will help you educate those around you most effectively.
To effectively educate others, you will need to partner with your school. Know that your attitude sets the tone. This will make or break how your school will or won’t work with you. If you go in with a steamroller approach with demands, you’re likely to meet resistance. Have you ever heard the saying, “you catch more flies with honey than vinegar?” Approach your school with a positive, understanding attitude and you are more likely to see positive, understanding results!
Find Educational Resources YOU Trust. You can direct others to these resources and use them to bolster your position. They will also help you remember that you aren’t alone! Here are links to some of my favorites.
- FAACT – Food Allergy & Anaphylaxis Connection Team FAACT is currently my favorite because I find them the easiest to navigate and LOVE their primary focus on education. TheirSchool Curricula Program offers ready to share presentations for the classrooms, beginning with K thru 3.
- FARE – Food Allergy Research & Education FARE’s ‘Be A Pal: Protect a Life’ program spotlights Alexander the Elephant and his circle of food allergy friends. I still use portions of this program when presenting to preschool and early elementary school children.
- KFA – Kids with Food Allergies KFA hasan entirepage dedicated to keeping kids with food allergies safe at schools, including free guides and handouts!
Find a Food Allergy Action Plan (FAAP) YOU Like. Your allergist fills out this form outlining actions to be taken by a caregiver in the instance your child has an allergic reaction while in their care. Here is one place you can start: Children’s Physician Network Food Allergy Action Plan
4. Management Plan
Figure out WHAT KIND of Management Plan Your Child Will Need. IHP? IEP? Or 504? If your child has life threatening food allergies, they may be considered as a qualified student with disabilities under the Americans with Disability Act (ACT) Amendments Act of 2008.Section 504 of the Rehabilitation ACT of 1973 requires that the school district to provide a “free and appropriate education” (FAPE). Then again, this will depend on whether they are attending a school receiving ANY federal funding, and laws can vary from state to state. DON’T be overwhelmed! Your allergist can help you out!
5. Gather Resources
Find some books and videos you like. My favorites include: the ENTIRE No Biggie Bunchseries, The Bugabees, The Princess and the Peanut, and the Alexander the Elephant Who Couldn’t Eat Peanuts – Gets a Babysitter
6. Create a School Food Allergy Binder
Put together useful Resources and have a copy available to share with the nurse and teacher. I would also include some kind of handy labels you can use to mark ‘SAFE’ snacks or a snack box for your child. Any kind of label will work. Here’s an example of the ones I personally designed: S.A.F.E. Food Allergy Labels.
Find samples of food allergy flyers on line which you like. Just type in ‘peanut free’, ‘allergy free’ pics in your favorite search engine and you will find ALL kinds of different flyers you can use. Have these different options available to share with school personnel.
8. Meet with People
Meet with the Principal. Meet with school nurse. Meet with your child’s teacher. This is your opportunity to meet with everyone and explain your concerns. Let the individuals know you’re wanting to partner with the school to create a SAFE and enjoyable learning environment for everyone. It will be at this time you will find out what previous experiences these individuals have had in managing food allergies. You may be pleasantly surprised. You may be disappointed. Most importantly, you will be prepared to decide what direction you need to go in moving forward with your school.
9. Have Your Child Meet with ALL of the People They Will Meet
This is the opportunity to show your child all the individuals around them whom are working to keep them SAFE. Don’t underestimate the NEED for your child to need to feel this comfort. They don’t WANT to feel singled out, but they also need to feel SAFE.
10. Get Involved!
Set up a time to go in and read stories, show a video, whatever it is you want to do to make learning about food allergies FUN! In the beginning it may be nerve racking.
Daniella Knell, owner of Smart Allergy~Friendly Education, is mother to two children with food allergies. You can find her displaying her public speaking skills in local schools and hospitals, blogging, and presenting allergy~friendly smoothie videos. For allergy~friendly ideas for your household, visit Daniella’s website, Facebook, LinkedIn and Twitter.
We receive letters from parents from around the country and around the world. Some express gratitude, some grief, some share stories of hope, some share stories of heartache.
When we received this letter to our founder, we felt it was a powerful one to share. What would our grandparents say?
I just wanted to thank you from the bottom of my heart for your work. My little Ginny was born the day after Christmas in 2012. At 3 months she developed severe eczema due to a dairy allergy. I stopped nursing because my dairy free diet didn’t seem to help her skin issues. She eventually ended up on Neocate. As we slowly introduced new foods she was doing very well until I decided to try hummus on the New Years Day after her first birthday. She went into anaphylaxis and we rode in the ambulance to the ER while my older daughter stayed with a neighbor until my husband could pick her up. This was by far the scariest day of my life. As we navigated the allergy world and added new allergies (egg, chickpea, lentil, garlic, sesame, peanut) I felt hopeless and powerless. I wanted to know why this was happening and (this seems a bit crazy but) what could we do now to prevent Ginny’s children from having the same issues.
I started to do just a little reading on the subject and I ran across an article about wheat being doused in roundup and felt dizzy. From there I started doing more research until I ran across your work. Your perspective is very much like mine. This journey started with an allergy in my child but I am also a conservative so writing letters to my Republican congressman about the DARK act that he supports feels strange (my guy is Joe Wilson…. The “You Lie!” fella).
My granddaddy was an agriculture teacher in south Georgia. When I was a little girl he planted a row of peanuts for me. His town has a peanut festival each year and he was the grand marshal of the parade one year. He passed away at the same time as the festival and I remember that people were wearing peanut tie pins and earrings. My sister bought peanut Christmas ornaments for my mom and for me after he died and every year when I would hang the ornament, I would think of him. Now, when I pull out the ornament I have conflicting feelings. I remember him and how much he loved the farming community and I wonder what he would think of all this. I also look at this ornament as the enemy and something that could harm my child. I wish granddaddy was still around so I could talk to him about all of this.
I feel sort of silly writing to you but I just had to say thank you. I can’t imagine doing what you do with four children but what you are doing is so very important so thank you, thank you, thank you.”
Be brave. Courage is contagious.
The food allergy community is a powerful one. None of us chose to be part of it, it chose us. And stories, successes, heartaches and strategies are often shared across networks and social media.
Like the piece below. Dawn Crowe, a mom with a child with food allergies, shared this on her Facebook page this morning. It was written by Carissa K. Her words ring so true. Allergy moms are everywhere, from the beautiful Julie Bowen to the ones on the sidelines at soccer games, and as the mom below writes, we are all “humble and grateful and reminded of just how fortunate we are that we are the parents of a child with only food allergies.”
“What it’s Like to Be an Allergy-Mom”
1. As the parent of a child with food allergies, it makes us crazy when people make any sort of assumption about food allergies other than this one assumption — a food allergy is a life-threatening condition that causes children to stop. breathing. immediately. It’s very real… and it’s very scary.
2. As the parent of a child with food allergies we want you to know that this is not a lifestyle choice. While it’s admirable that some people choose to eat healthy and be aware of the ingredients in their food, we aren’t standing in the grocery store aisle reading the label on everything that goes into our cart as a hobby. We’re studying those ingredients to make sure there’s not an obscure ingredient that could kill our children. (Did you know that caramel coloring is made out of dairy? Are you familiar with the difference between sodium lactate and potassium lactate?)
3. As the parent of a child with food allergies there is not a playdate or school activity that our child will attend without us having a discussion with the hosting parent, event chaperone or teacher first. Every event my child has ever participated in (ever!) from t-ball to school to summer camps has always been preempted with a medical conversation first. We know we’re perceived as high-maintenance parents. And we feel badly about that because the level of diligence we’re forced to have about the subject of food allergies may not be consistent with the level of diligence our personalities would normally reflect.
4. As the parent of a child with food allergies we have laid awake at night, wondering if we’ll be able to spot the signs of our child’s throat closing. We’ve been told that anaphylaxis can happen in less than two minutes, so not only do we wonder if we’ll be able to identify this emergency, we wonder if our child’s teacher, babysitter, grandparent, recess monitor, friend or coach will know when our child can’t breathe.
5. As a parent of a child with food allergies we have laid awake at night, wondering if our child will ever be able to attend a party in college or share a random kiss. And if he does, who will carry his epi-pen?
6. Speaking of which, as the parent of a child with food allergies we leave the house remembering the basics like phone, wallets, keys — and epi-pens. We know not to leave them in a car that is too hot or too cold and we always carry at least two, if not seven. Even with insurance, they are $25 a pop, so we treat them with the utmost respect for the year that we have them before they expire. But that’s all ok, because those little devices carrying a shot of adrenaline could save our child, or at least sustain them, until the ambulance arrives.
7. As the parent of a child with food allergies, we sit outside every birthday party or sports practice while other parents leave.
8. As the parent of a child with food allergies, we balance the emotional impact of being a helicopter parent against the medical threat of having our child go into anaphylaxis when we’re not around. We feel guilty and scared of both.
9. As the parent of a child with food allergies, we have never relaxed, sat back and actually enjoyed or tasted a meal in a restaurant. Never. You see, we spend those meals playing and replaying the emergency plan in our head while quietly observing our child’s breathing as he enjoys his meal.
10. As the parent of a child with food allergies, we regularly attend medical appointments in big time children’s hospitals where we can’t help but see other patients and deeply suffering families. And upon this realization, we are humbled and grateful and reminded of just how fortunate we are that we are the parents of a child with only food allergies. While our child has a life-threatening medical condition, it is manageable. And as long as we have help from you and others in managing it, our child is alive — and that’s really something!
This article first appeared on Huffington Post. To read more of Carissa K.’s work, please visit http://www.carissak.com/