Archive for the ‘News’ Category
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.”
It’s not often that you are able to identify without a shadow of a doubt a person that changed the world overnight. Becky, a single mom of two, did just that.
In 2012, she decided that in order to help food allergy families during Halloween, she’d put out a teal pumpkin on her doorstep to signify that she had treats available that were safe food kids with food allergies.
According to Allergic Child, “It was in the fall of 2012 that Becky Basalone, the director of a local food allergy support group, first had the bright idea of painting a pumpkin teal, the color of food allergy awareness, and handing out non-food items. What she didn’t know was that her green-blue pumpkin would become a nationwide symbol for Halloween food-allergy awareness. In fact, it’s even taking off in Canada and Britain.”
Needless to say, the idea took off. Today, food allergies impact 1 in 13 kids and send someone to the emergency room once every three minutes in the United States.
We’ve got a problem with food, and we need solutions, and Becky’s idea is just that. She created the Teal Pumpkin Project as a way to let trick or treaters know that a house offered non-food treats like stickers, bubbles, glow-sticks and pencils to hand out.
Last year, the Teal Pumpkin Project™ was wildly and widely embraced by parents around the country. We loved it. It was smart and easy and practical. The idea has now been trademarked by FARE (Food Allergy and Research Education). FARE licenses its use out to food retailers and food manufacturers at Halloween and restricts its use.
We never want to lose sight of the mom in Tennessee that is behind this brilliant idea.
She is one of our absolute favorite Food Heroes here at AllergyKids.
Meet Becky, the incredible mom and visionary behind the Teal Pumpkin Project™ (you can learn more about how to license its use here).
Your Name: Becky Basalone
Civil Servant and Founder/Director of the Food Allergy Community of East Tennessee (FACET).
Your Blog/Website/Twitter Profile:
Your Go-to food that you cannot live without:
I’ve learned that there is no food product that I could not live without – I typically adjust well when it’s necessary – BUT I’d be grumpy for a while if I had to give up chocolate.
What characteristic do you most admire in a person?
Integrity – there are so many good qualities that may be directly related to this one characteristic in a person.
What do you most deplore?
Selfishness, dishonesty and rudeness
What is your best trait?
I’m having a hard time answering this so I’m going to say that my best trait is that I’m extremely humble.
Which person living or dead would you most like to have a meal with?
I’d like to meet my paternal grandmother. She died many years before I was born.
What would you serve?
A whole buffet of her favorite foods (our family recipes).
What trait do you most deplore in our food?
It is disgusting that we have a food system full of chemicals that actually cause cancer and other health problems/conditions.
If you could deliver five words to Congress what would they be?
Clenched fists can’t shake hands.
If the USDA asked you to replace the word “organic,” what would you use? I would say “authentic” or “real” but unfortunately we know that those words have been misused and adulterated by the food industry much in the same way as the term “organic.” Ideally, it would be awesome to see a food system in which the chemically-laden and processed junk food needs its own classification and not the other way around.
If you were a piece of food, what would you be?
This question makes me laugh because it reminds me of a saying, “If I were a vegetable, I’d be a radish because I’d like to think I’m kind of rad.” No, but really, those little vegetables are bright, somewhat shy, strong, resilient, grounded and never pretend to be something that they aren’t. I like that and would like to think that description also sums me up pretty well. (Please see the best trait question above)
What is your current state of mind?
What is your motto? I have a few mottos that I try to live by each day: 1. Just keep swimming (ha!). 2. Nothing is impossible. 3. Do all things in the Glory of God.
Did you know that according to the National Retail Federation, there will be over $1 billion in candy sales this Halloween? In 2005, the average American consumed 25.7 pounds of candy, per capita, much of it around Halloween. And on top of that, the CDC recently reported that 1in 3 Americans are expected to have diabetes in the next forty years.
So what’s a parent to do? It’s Halloween, for crying out loud!
When trick-or-treating entered the American scene in the 1920s, neighbors gave children items like apples, pastries, breads and even money. So why, 40 years later, are there $1 billion in candy sales each Halloween? How has food marketing taken over this tradition?
“Companies went after Halloween candy a long time ago,” says Nancy Childs, Ph.D., professor of food marketing. “Candy companies are active and aggressive marketers who offer convenient, pre-packaged treats to fulfill the tradition.”
But have you ever read the side of a candy box?
According to Pure Fun Candy, the FDA does not monitor artificial colors, flavors and preservatives nor require that they be tested. Rather, the concept of “threshold of toxicological concern” has been proposed by the FDA to set acceptable daily intake for chemicals of unknown toxicity, apparently on the theory that a little bit can’t hurt. But have you ever seen a kid eat a ‘little bit’ of candy?
On top of that, research published in The Lancet, a leading medical journal in the UK, suggests that these additives do affect the brain chemistry of children, causing hyperactivity and ADHD like behavior. The research is so strong that Wal-Mart in the UK agreed to ban these ingredients in children’s foods and government agencies around the world have banned or removed these chemical additives in children’s foods. But American kids still consume these additives in record amounts, especially at Halloween.
But it doesn’t have to be that way.
And while sugar is still sugar, organic candy does not contain toxic pesticides, high fructose corn syrup or other chemicals or genetically modified ingredients (ingredients engineered into corn and soy by the agrichemical industry to help these plants produce their own insecticides or withstand increasing doses of weed killers) that aren’t used in children’s foods in other countries.
But with budgets tight, that’s not an option to most families, But given reports by CNN addressing toxicity in children and a Senate hearing in 2011 in which CNN’s medical correspondent, Sanjy Gupta, addressed the same, perhaps we should take a cue from parents in the 27 countries in the European Union, in Canada, Australia and try to avoid the ingredients that their government agencies have banned in children’s foods – things like high fructose corn syrup, aspartame, MSG and those genetically engineered ingredients producing their own insecticides.
Do One Thing
So while we can’t make the perfect the enemy of the good, we can all do something, focusing on progress not perfection. So maybe this Halloween, you can opt-out of juice that contains high fructose corn syrup or artificial colors as a way to reduce your children’s exposure. Or when it comes to that inevitable deluge of candy, you can offer to engage your kids in a candy swap. For every few pieces of conventional candy that they collect, trade them in for a healthier treat, a sticker or some small toy.
Or better yet, write a letter to the Great Pumpkin. Apparently, he’s been known to bring little presents like gift cards or a book to children who leave their candy baskets outside the front door for him in the first week of November.
You can make a difference in the health of your family. The opportunity is enormous, and the time is now.
To learn more about ways to protect your children from genetically engineered ingredients in Halloween candy, you can visit the Non-GMO Project’s Guide to Halloween.
Additional information is also available at www.greenhalloween.org
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
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.