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Meet the Mom Who Launched the Teal Pumpkin Project™

May 1, 2017 •  no comments.

 •  Blog, News

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.

becky boys
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).

beckybtealYour Name: Becky Basalone

Your Occupation:
Civil Servant and Founder/Director of the Food Allergy Community of East Tennessee (FACET).

Your Blog/Website/Twitter Profile:
Website: www.joinfacet.com
Twitter: @joinfacet

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?
Determined.

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.

 

A Race to the Emergency Room & Why the Price of EpiPens Matters

April 20, 2017 •  no comments.

 •  Blog, News, Uncategorized

On October 1, 2013, a 14 year old boy had an allergic reaction that would take his life. On the one year anniversary of his death, I sat down with his mother. Today would have been his 17th birthday.

She reached out again last month with a very urgent email: “Robyn, the price of Epipens are skyrocketing. Families can’t afford them. Can you help me get the word out?”

I was stunned. Here, she had suffered the unimaginable, the loss of her teenage son, and she was asking to help others.  Where does a love like that come from?

Screen Shot 2016-08-22 at 5.16.42 PMThe heart of a mother. It stopped me in my tracks, because countless parents have reached out over the years. I’ve sat with those who have lost their children to a food allergic reaction.  They don’t stop loving that child just because he or she is gone. They put that love into action.

And as I began sharing this, focusing on the meteoric increase in the price of Epipens, up almost 500% since 2009, other parents began sharing their stories, too.

So today, on what would have been Gio’s 17th birthday, we are sharing the story from his amazing mother again.

A mother does not stop loving her child because he is gone. If Georgina is any indication, she loves him more.

Please meet my beautiful friend, Georgina. Her story is below:

When Giovanni was around 18 months old, I made chicken with a peanut sauce. After one bite, Giovanni began to get hives, his eyes swelled…. I called our pediatrician, who told me to give Giovanni a dose of antihistamine and bring him in. Once there, our pediatrician said Giovanni must be allergic to peanuts and advised me to keep an eye on him and to give him antihistamine as directed. His symptoms did not get any worse that day, and we left with a referral to an allergist.

After going to the allergist, Giovanni was diagnosed with allergy to peanuts and other things. I remember the nurse giving me a prescription for antihistamines and an epinephrine auto-injector and showing me how to use it in case of an emergency. I wasn’t given a food allergy management plan. I don’t remember there being any sense of this as a life-or-death situation – just a diagnosis, prescriptions, and the recommendation that we follow up with our pediatrician.

So from then on, that is what I did. Giovanni’s pediatrician was his “go to” doctor for everything. When we asked about seeing a specialist, our pediatrician stated that he would treat Giovanni first.

Giovanni had a few allergic reactions to peanuts. We never thought these reactions were severe. He would usually vomit, get some hives, and have a bit of scratchy or tingly throat. After a dose of antihistamine, symptoms seemed to calm down and go away on their own. Thinking back, these reactions would be considered anaphylaxis, and were severe.

I followed up with the pediatrician, who said I should give Giovanni antihistamine since his reactions were mild, and he should be okay. We were never told that epinephrine must be used for certain symptoms, only that it could be used if we really thought he needed it. But, since he never had a bad reaction, I didn’t think he needed it. That was the extent of our anaphylaxis management planning.

A Severe Reaction

On October 1, 2013, Giovanni and I were settling in early, happy that homework was finally done early, dinner and chores were done, and we were going to be able to enjoy movie night together – just him and me – for the first time in a while since school had started. Giovanni had just started at Holy Trinity High School, so homework, studying, and sports left little time for relaxing and leisure. We popped the movie in and had our snacks ready. One was a snack mix of mini cookies, pretzels, almonds, and M&M’s. I usually always bypass the full food label and go right to the bottom of the ingredients where they usually have an allergy disclaimer. I had read the back of the bag, and all I saw was “MAY CONTAIN TREE NUTS.” Good, I thought, he is not allergic to tree nuts.

I gave Giovanni a few pieces of snack mix from the bag, but within seconds he was saying, “Oh no, there are peanuts in here!” I said he was wrong and read the ingredients again. Although there was no “peanut” disclaimer, it did actually have peanuts as a main ingredient. I just didn’t read enough! I don’t know how in the world I didn’t see it.

I immediately gave Giovanni a regular dose of antihistamine and said we should go to Premier Care, the after-hours clinic, just to be safe. Then I gave him a second dose of antihistamine just as back up. Giovanni was only feeling a little scratchiness in his throat and was giving me a hard time about getting dressed to go to clinic.

At this point, I should have called 9-1-1.

I said let’s go now, just to be safe. The epinephrine auto-injector was on the table right next to my purse, and Giovanni asked if he should use it. I said I didn’t think we needed to, that we should just get to the doctor. I threw all the meds into my bag and left. On the way out, Giovanni asked if he should vomit, since that is usually what happened in the past. I said if you need to then try, but he couldn’t.

Premier Care is about a seven-minute car ride away. Giovanni was still talking on the drive there. He had his inhaler with him and used it a few times. I kept telling him not be nervous, that he was going to be okay. We got to the office, and it had JUST closed. No one answered the door. Giovanni began to panic. We jumped back in the car and immediately started to look for the epinephrine auto-injector. We couldn’t find it.

At this point, he was still okay. He was still talking, just more scared now. I still was thinking we were okay. Now I had to drive to the emergency room, which was about another seven minutes away. All I could do was focus on getting there without crashing, I was beeping my horn and had my hazard lights on, taking every red light I could safely run and reassuring him every minute that he was going to be okay, that we were almost there, to just hold on another minute.

We were around the corner from the hospital when Giovanni must have felt something serious, and he said, “I can’t mom, I don’t want to die.” I was yelling, “No! No! That’s not going to happen. We’re here. Just hold on. I’m there in two seconds.” He didn’t respond.

I turned down the street to the emergency room and realized he was quiet. I grabbed his hand and said we’re here, but I realized he was cold. I looked at him, and he was blue. I started screaming and beeping as I drove to the emergency room entrance. There were people outside and I was screaming, “Help, my son has peanut allergy. He passed out. I need to get him inside!” They all ran over, and I remember about five of us struggling to get him out of the car. At the same time, emergency room staff came running out with a wheelchair, and we threw him in it. I was just screaming, “Help him, please! He is having an anaphylactic reaction to peanuts.”

Staff were running through hallway, yelling “We need a table now!” as I ran behind screaming “Please, help him!” That was the longest hallway ever. Then these nurses stopped me and took me into a small room while they took Giovanni away, and I had to wait and wait and wait. I had called my husband when we were leaving the house and told him what was happening and that Giovanni was okay. Now I had to call and tell him to get to the ER right away.

It was nearly an hour later when a doctor came out to brief us. She told me how they worked on Giovanni for quite a while, that his heart had stopped and that he had been without oxygen for about 3 minutes, but that they were able to save him. They told me he was on a respirator. I was finally able to see him. He was unconscious and needed to be transported to a pediatric ICU.

Giovanni was in a medically induced coma for several days in hopes of alleviating the trauma caused to his brain from lack of oxygen, but he got worse when they tried to bring him out of the coma. Doctors re-induced him into the coma in hopes that he would recover. But after three weeks of exhausting all measures to try to save him – after many hopes and prayers – Giovanni’s body just couldn’t sustain the injury to his brain, and he passed away on October 18.

I am grateful that I was able to hold my little boy in his bed, along with his dad and his sister, and was surrounded by every one of his closest family members, every one of them holding hands, holding each other up, while he crossed over to finally be in peace.

Lessons Learned

His physician was our pediatrician for more than 20 years. He didn’t take his allergies serious because he wasn’t educated enough about them. When I called him from the emergency room to tell him we are in the ER and why, he just said that there wasn’t anything to do, that the hospital doctors would be the one taking care of him.

The next time I heard from him was 10 minutes after Giovanni had passed away. My cousin had answered the phone, he was calling to see how he was. And didn’t really have anything to say. He never called, did not send a card, did not come to his funeral nothing. I still can’t believe it.

The night of his accident we were to be picked up from other hospital he needed to be transferred to hospital With PICU unit, the head nurse from this other hospital was (unbeknownst at the time) sent to be his angel, our angel. She told us she had just gotten back from an all day conference on food allergies and EpiPen importance. I have kept in contact with her and just the other day called on her to help me figure out how I can reach out to the entire medical field, re: American pediatric association. I am trying to figure out the best way to reach them to express the importance of global change of education to all physicians, nurses, ems, to follow one basic protocol when administering life saving information about food allergies.

Giovanni’s Legacy

When I asked Giovanni’s mom to tell me about her son, the sports he played and his friends, this is what she shared:

He was such a beautiful boy. So loving, caring, helpful. Loved life. He is so very much missed by all. His sister is all alone without him. His friends loved him so much. They still contact me from time to time to see how we are.

The one thing that is consistent when they speak of him is how beautiful his smile was, how he was so happy, always goofing off, making everyone laugh; he knew if you were having a bad day he would ask if you were ok and find a way to make you feel better.

Giovanni had just started high school at a private school, it was a big change for him but he loved it. EVERY single student in that school came to his wake/funeral. They all told us what an amazing kid he was, so many said even though they didn’t get a chance to actually speak to him they remember his infectious smile and that he was always making someone laugh.

Giovanni was an amazing athlete. Since the age of 5 he was playing baseball, soccer, football, basketball. His first love was football but a few years ago decided that baseball would be his career. He was known everywhere he went. Everyone wanted him on his or her team.

Right before the accident he had just gotten back from a travel team tournament that weekend. He was going to be a major league player no doubt. He was an honor student. A best friend, his father’s pride and joy, he was my whole life. He was my Protector, my son, My friend, my SOULMATE!

Communities from so many Towns have come together to remember Giovanni. In the town where dad is from, Our Lady of Peace school, one mom who has a food allergic child and is on the board had their food allergy policy revamped and dedicated to Giovanni. When Giovanni was in school at all times his friends/teachers all were very cautious and mindful of his allergies. His two very best friends were also allergic to peanuts /nuts and some other things as well so it was always a comfort knowing that he would be safe with them.

There was always a smile on his face. He was running from the time he woke up to the time he went to sleep. And even when he was sleeping he was still a restless sleeper. He was a star athlete. He was a best friend. He was the best brother. He was my little boy, my little man. He took care of me, and I took care of him. He was my friend, my partner. He was the reason I did EVERYTHING I did. He was his dad’s pride and joy. His dad is lost without him. He was an honor student. He knew to be helpful, to be of service, to be respectful. He knew how to seize the day and run with it.

Giovanni’s loss is felt not just here in our family, in our community, but all over the country. Giovanni’s loss is awful, it is heart wrenching, it doesn’t make sense. If it has taught us one thing, it is that we know we don’t want anyone to ever have to feel the pain that we feel.

What Do You Want People to Know?

We want to help educate and advocate for all families living with food allergies. We want everyone to know that food allergies are serious. Some people think it’s not that big of a deal, that food allergy parents tend to overreact, and for the simple and lucky reason it hasn’t yet affected them.

“How many more lives need to be lost to prove it is a big deal?”

Food allergies can mean life or death. In the past two months, it has become apparent just how true that statement is. Two more little lives have been taken in our community due to a peanut allergy. More people need to be informed about the dangers of food allergy, including healthcare professionals and parents. If you have a food allergic child, seek consultation with a board certified allergist who has expertise in food allergy. Allergist evaluation and periodic routine follow up are recommended steps in the NIH food allergy guidelines for caring for food allergic children. It is important to do your own research and be your own advocate. Find the very best doctor you can, and even if he’s a little farther away, it may be worth it to go those extra miles. If you advocate for your child and do the research, it is possible that you may be able to help your doctor form the best treatment plan possible for your child. If you are not happy with the treatment or feedback, then find a new doctor. Do not settle! If you reach a point where you are not comfortable with just your primary care physician managing your child’s food allergy, then you have to have a frank discussion with this provider about your desire to involve a food allergy expert in the care.

Know the Signs and Symptoms

The most important information we want everyone to know is that when there are signs or symptoms of anaphylaxis, administer your epinephrine auto-injector (such as an Auvi-Q or Epi-Pen). This is the first line of treatment for anaphylaxis! Always have your epinephrine auto-injectors available. It is wise to have two doses available because some people may need a second dose. Do not hesitate to use this when it is needed! It can save a life. Epinephrine use has virtually no downsides or bad side effects beyond increasing the heart rate and blood pressure, and possibly causing some temporary bruising and pain where the device was injected. Most importantly, make sure you have a written anaphylaxis management plan provided by whoever is managing your child’s food allergy. This must be reviewed until you know it like the back of your hand, and you are comfortable with the steps. The physician creating this plan must be able to clearly explain to you what symptoms require antihistamine, and what other ones can only be treated with epinephrine. It is your responsibility to master this plan, and be ready to act should the need arise.

If you should have to treat your child with epinephrine, call 9-1-1! Call your local ambulance service and tell them that a child is having an allergic reaction and may need more epinephrine. (An ambulance should be called not because epinephrine is dangerous but because the allergic reaction could be severe, needed to be treated with epinephrine, and may require more treatment). Even if you are unsure if your child needs the epinephrine, don’t hesitate. Don’t let fear take over. It won’t harm your child if it turns out not to be needed, but it will harm your child if you don’t use it, and it was needed!

You have some incredible goals. Will you share them?

I have many goals to conquer but educating people about this is at the top of my list And I will be heard if it’s the last thing that I do. Thank you for listening. ❤

Important Resources:

“May contain” labels on our food packaging are voluntary. The Food Allergen Labeling and Consumer Protection Act (FALCPA) was passed by Congress to ensure that there would be clearer labeling of food for the millions of people with food allergies. As of January 01, 2006, all food products regulated by the FDA must be labeled in a specific way to identify the eight major food allergens, but there are exemptions and loopholes.

It is painfully clear that not enough parents are aware of these exemptions and voluntary labels. To learn more, please click here.

Read the ingredient list and label all the way through. Do not rely on the “May Contain….” or “Contains….” statements at the bottom of the ingredient list. It is a voluntary statement and not required under the food allergy labeling law.

To learn more about the sign and symptoms of food allergies, please click here.

To learn more about the Food Allergy Labeling and Protection Act and what is voluntary and how to protect your loved ones, please click here.

To read Giovanni’s full story, please click here.

To help prevent another food allergy death, please share this.

To sign the petition urging an investigation into the skyrocketing price of Epipens that are putting lives at risk, please click here

Ten Years After Removing Fake Colors from M&Ms in the UK, Mars Finally Does It Here

February 8, 2016 •  no comments.

 •  Blog, News

rainbowOne of the biggest pet peeves of American parents is that a lot of food companies have already removed artificial dyes and colors from the products that they sell overseas. The maker of M&Ms, Mars, has always been one of them. Back in 2008, when I was writing my book, I shared this comment when Mars UK decided to remove artificial dyes from their M&Ms. The date was 2006.

“We know that artificial colours are of concern to consumers, which is why, in 2006, Mars began a programme to remove them from our products. . . in November 2007, Starburst Chews became free from all artificial colours. . . . in December 2007, Skittles were made free from all the artificial colours highlighted in a landmark study by Southampton University. . . We have already removed four colours mentioned in the Southampton study from Peanut and Choco M&M’s, and are in the process of removing the final one so they too will be free from these artificials during 2008.”—Mars UK

Mars, Inc.’s finally took action in the U.S. this week, ten years later, announcing that it will get synthetic food dyes out of its entire human food portfolio is a huge advance for parents and children and should serve as a powerful incentive for the rest of the food industry to follow suit.

The Center for Science in the Public Interest has been a leading voice on this for a decade. Their report, “Rainbow of Risks” is one that many of us have leaned on as authors, parents and advocates. They wrote, “We appreciate the fact that Mars listened to our concerns and to the concerns of its customers and that it is exercising this kind of responsible leadership.

The Food and Drug Administration should level the playing field for the whole industry by banning Yellow 5, Red 40, and other synthetic dyes used in food. There is simply too much evidence demonstrating that these artificial dyes trigger inattention, hyperactivity, and other behavioral reactions in children. The use of these neurotoxic chemicals to provide a purely cosmetic function in foods, particularly foods designed to appeal to children, must stop.

Mars’ action is not only a big victory for parents; it is also a big victory by parents. We’ve been pleased to work with moms and dads from around the country who have written to the FDA, contacted food companies, and signed petitions like the one focused on Mars that Renee Shutters started on Change.org. It shows that when consumers make their voices heard, food companies will sometimes actually listen.”

Last year, I was contacted by members of the team from Mars, and I shared my candid thoughts.  If these food companies want to remain relevant in the 21st century and in this new food economy, they can no longer deny the will of their consumers who want food that is free-from all of these artificial ingredients.

It is time to #dumpthejunk.  Thank you, Mars, for listening.

The Great Pumpkin & A Healthy Halloween

October 21, 2015 •  5 comments.

 •  Blog, News

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

Emily’s Story: A Life Lost and a Parent’s Greatest Wish

May 16, 2015 •  no comments.

 •  Blog, News

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