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food allergy family

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Food Allergy Advocacy in Schools

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

- Abbe Large 

 

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

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Roses are Red, Violets are Blue, Sugar is Sweet, and Food Allergies Can Be Sweet Too

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Ah, Valentine’s Day. For some, this day provides a great excuse to press pause on the stressors of life and take time to celebrate the ones you love. For those with food allergies and intolerances, however, this day can bring about a lot of anxiety. 

If you’re a food allergy parent like me, here’s what probably goes through your head: Will my child be given a valentine that contains their allergen? What will be served at school? Will they feel comfortable speaking up to ensure the treat is safe? Why does this holiday have to center around food?!

If you are celebrating Valentine’s Day as a food-allergic adult, it can be just as stressful. Valentine’s Day often comes in the form of chocolates, or a splurge on a nice dinner and dessert (in our house that means sushi)!

We get it guys. This holiday can be hard. That’s why we’ve teamed up with our friend chef Ming Tsai to bring you a homemade sweet treat this Valentine’s Day. 

Easy? Check. Healthy? Check. Top eight allergen free AND gluten free AND sesame free? Check check check. 

Here’s Chef Tsai’s recipe for Strawberry Coconut Sorbet (note: this recipe contains coconut). 

Strawberry Coconut Sorbet (serves 2)

- 1/2 cup frozen strawberries

- 1/2 cup coconut milk

- 1/4 teaspoon lemon zest

- 2 tablespoons unsweetened coconut flakes

Add strawberries, coconut milk, and zest to a blender and blend until just smooth. Serve immediately and garnish with coconut flakes or cacao nibs (or whatever your heart desires 😍).  

Enjoy friends!

XOXO, 

Meg and the Allergy Amulet Team 

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More Adults Have Food Allergies Than Previously Believed

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Last month, we shared the latest research on food allergy trends among children. The study found that approximately 7.6%—or 6 million—kids in the U.S. have a food allergy. Now we have more breaking food allergy news to share—this time concerning adults.

In early January, The Journal of the American Medical Association (JAMA) published a study on the prevalence of food allergies among U.S. adults. What did they discover? Approximately 1 in 10 American adults (~26 million) have a food allergy. 

This brings the total number of Americans with a food allergy to approximately 32 million, more than doubling the food allergy population! Previous estimates had the population at roughly 15 million Americans.

Below are a few more key findings:

  • Adult onset of food allergies is becoming more common; nearly half of food-allergic adults have at least one food allergy that began in adulthood.

  • The most common allergies among adults are shellfish (7.2 million), milk (4.7 million), peanuts (4.5 million), tree nuts (3 million), and fin fish (2.2 million).

  • Food allergies occur more often in non-white adults than in white adults.

  • Nearly 40% of adults with a food allergy reported at least one food allergy-related ER visit in their lifetime.

  • Adults ages 30-39 had higher rates of food allergy than younger adults. Adults over 60 had lower rates than other adult age groups.

Dr. Ruchi Gupta and her team at Northwestern University conducted both the adult and pediatric studies. Consistent with their research on children, Dr. Gupta’s team applied a stringent symptom methodology, which looked at the frequency, type, and severity of allergy symptoms as part of diagnosis to filter out those who more likely had a food intolerance. 

One thing is clear: food allergies are on the rise, and we need greater education, awareness, and research on this troubling health trend. 

A big thanks to Dr. Gupta and her team for their ongoing efforts to shine a light on the rising food allergy epidemic in our country.

- Susannah and the Allergy Amulet Team

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Take Two: The Importance of Carrying Two Epinephrine Auto-injectors

With Halloween around the bend, we wanted to share a quick PSA on the importance of carrying two epinephrine auto-injectors in case of an allergic reaction. 

Why? Let’s look at the facts.

In cases of severe anaphylaxis, one dose of epinephrine is often not enough. Up to 20% of people who receive an initial dose of epinephrine for anaphylaxis require a second injection. This can happen even without further exposure to the allergenic trigger! A second allergic reaction called biphasic anaphylaxis can occur between 1 to 72 hours (typically eight hours) after the initial reaction.

Despite these harrowing stats, most individuals do not carry two auto-injectors.

In a study of roughly 1,000 US patients and caregivers with epinephrine prescriptions, 82% said they do not carry two auto-injectors. Meanwhile, 75% of respondents reported previously administering epinephrine. Of those that sought emergency care, 45% did so because a second dose of epinephrine was unavailable. 

Education and awareness is also lacking. Only a quarter of respondents reported that they were advised to carry two auto-injectors.

But epinephrine is expensive.

We hear you. Epinephrine auto-injectors are not cheap, which can make it difficult to have multiple epinephrine auto-injectors on your person at all times.  

Fortunately, that’s starting to change. Increased market competition and PR scandals like the one that rocked Mylan have helped drive down the price. 

Additionally, below are some cost-saving options worth checking out. 

-      Check for discount codes and savings plans on manufacturer websites. 

-      Purchase generic epinephrine alternatives.

-      Explore mail-order pharmacy options (you may be able to receive a larger supply of medication at a lower co-pay amount if these benefits apply).

-      Price shop between local pharmacies—prices vary, especially between large chains and small pharmacies.

-      Ask your doctor about patient assistance programs. 

-      Switch to your insurance carrier’s “preferred” auto-injector (if applicable).

-      Double check that your pharmacy has applied all possible coupons at check out.

-      Ask your company’s HR department if they offer financial assistance to employees to cover prescriptions.

We hope you all have a SWEET and SAFE Halloween! And don’t forget to TAKE TWO!

-      Meg and the Allergy Amulet Team

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Food Allergy Awareness Week! Things I’d Like People to Know… And a Little Dr. Seuss

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It’s almost here, food allergy awareness week 2018! The official dates for this year are May 13-19.

I’m currently sitting in my office looking at a recent picture of my daughter and me at our state capitol with the governor to advocate for food allergy awareness. If you’ve followed Allergy Amulet for a while, you know I’m a passionate food allergy mom!

One of the greatest things about food allergy awareness week is that it’s a conversation starter. I LOVE that statistics are being shared left and right to paint the picture of how many people are affected! Heck, even buildings around the country are “turning teal” in recognition!

However, it’s important that the conversation not just be about how MANY people are affected, but HOW they are affected. So in the spirit of awareness and conversation, I wanted to share 10 things I’d like other parents to understand about food allergies!

1.    Food allergies are not a choice. We don’t know why our family has food allergies, and we have to manage them diligently every day. Please don’t feel sorry for us, help advocate for us!

2.    Food allergies can be life threatening and they’re a serious health issue, not simply an inconvenience—trace amounts of a food allergy protein can be deadly.

3.   Food allergies require planning. We can’t often join spur-of-the-moment outings, so please make sure to give us a heads up so we can plan ahead!

4.    If we ask questions about your food multiple times, it’s not because we don’t trust you, it’s because there’s no room for error. It’s not personal, it’s precautionary.

5.   Food allergies can be draining—mentally, emotionally, and financially. We can’t let our guard down and our vigilance level is always in “on” mode. We want to experience the same events and activities as everyone else, but it’s not always easy.

6.   We’re not germ freaks if we ask you to wash your hands after eating, or if you see us wiping down an airplane seat with disinfectant wipes. It’s simply that we are trying to keep the risk of allergen exposure to a minimum.

7.    Activities don’t have to involve food to be fun! If you know that someone with food allergies will be joining an activity or celebration that you’re organizing, try to be mindful of the foods they avoid (and give them a heads up if their allergen will be present so they can plan accordingly)!  

8.    Always feel free to ask questions. We will never get annoyed if you ask us a million questions about our allergies. Education is the first step to understanding!

9.   We’re just parents doing what we have to do to keep our kids safe. Please realize we’re not trying to inconvenience you, and that we’d do the same for your child!

10.  It helps to have a village of support so you don’t feel like you’re isolated on an island—if you are part of someone’s village, THANK YOU. It’s not an easy task!

Lastly, I leave you with some brilliant words from Dr. Seuss’s Horton Hears a Who. It seems appropriate for food allergy awareness week. ☺️

Don’t give up! I believe in you all!

A person’s a person, no matter how small!

And you very small persons will not have to die

If you make yourselves heard! So come on, now, and TRY!

 

The Mayor grabbed a tom-tom. He started to smack it.

And, all over Who-ville, they whooped up a racket.

They rattled tin kettles! They beat on brass pans,

On garbage pail tops and old cranberry cans!

They blew on bazookas and blasted great toots

On clarinets, oom-pahs and boom-pahs and flutes!

Great gusts of loud racket rang high through the air.

They rattled and shook the whole sky!

 

When they got to the top,

The lad cleared his throat and he shouted out, “Yopp!”

And that Yopp...

That one small, extra Yopp put it over!

Finally, at last! From that speck on that clover

Their voices were heard! They rang out clear and clean.

 

And the elephant smiled. “Do you see what I mean?”...

They’ve proved they ARE persons, no matter how small.

And their whole world was saved by the Smallest of ALL!

 

- Meg and the Allergy Amulet Team 

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My Child Doesn’t Have a Food Allergy... But Her Friends Do

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When my family moved to a new neighborhood five years ago, we quickly learned that our new neighbors’ oldest son had a severe peanut allergy. Our children became fast friends, and the kids went back and forth between the two houses all the time. None of our three children have food allergies, so this was very new to us. To ensure that he was safe while under our care, we knew we had to get up to speed on how to keep him out of harm’s way (and well fed!).

Here are the top 10 tips we’ve learned, in case you find yourself in a similar situation:

1)    Ask the Question. Inviting a new friend over for a play date or sharing snacks at the park? Always ask the other parent or caregiver if their child has any food allergies. Allergy parents are often grateful if you bring it up!

2)    Read Labels. Get to know the ingredients of the snack foods you regularly buy. Which granola bars contain tree nuts? Which crackers are made in a facility that processes peanuts? At a minimum, know where to look on the packaging to find allergen info. I’m often surprised when a food I would have considered to be nut-free actually isn’t. We’ve created a cheat sheet for you to learn the rules of label reading!

3)    Keep the Original Packaging. It’s so much easier to check the ingredient list on a box of crackers if it is still in the original packaging. Often, similar products made by different companies have different allergy warnings and ingredients. 

4)    Have Allergen-Free Snacks on Hand. Consider offering fresh fruits, veggies, or cheese for kids who can eat dairy. We’ve found that parents of kids with allergies are happy to make suggestions for healthy and safe snacks that everyone can enjoy. As an added bonus, minimally processed foods are healthier anyway!

5)    Think About Cross-Contact. When you make a PB&J for your child, does the knife go in both jars? If so, that jam may contain peanuts. I try to use two different knives, but if we have a friend over with a peanut allergy, I open a new jar of jam rather than risk an allergic reaction.

6)    Keep Up the Hand Washing. We all know we should have kids wash hands before eating, but what about afterwards? If your kids eat a peanut butter sandwich, be mindful that their hands may have peanut residue on them, which could pose a risk to those with peanut allergies! Post-meal hand washing also helps keep those toys clean! 🙌  

7)    Think Outside the House. When we carpool with the neighbor that has a peanut allergy, I wipe down the car handles and other surfaces that our kids touch, especially since our family often eats in the car! Let’s be honest, don’t we all? 😉

8)    Make Birthday Parties Inclusive. Ask about food allergies on the invitation. For an electronic invite, you can list what you are planning to serve. We have a child in one of my kids’ friend groups with an egg allergy. His mom is always willing to bring alternative snacks and treats, so a heads up is appreciated in case she needs to plan ahead! 

9)    Know and Support Your School’s Rules. Our elementary school has some classrooms that are nut free, so we always pack nut-free snacks. The lunchrooms are generally nut friendly, with designated nut-free tables. If my child wants to eat with a friend who sits at the nut-free table, he also needs a nut-free lunch. It’s important to avoid undermining the school’s allergen policies. There are plenty of delicious food options for your child that will also keep their friends safe!

10)   Make it Easy on Older Kids. Older kids don’t want you hyper-managing their food choices, especially when they aren’t your children. Make it easy for teens and tweens to self-manage their food allergies by offering plenty of safe options and letting them choose. 

With these guidelines in place, we have been able to successfully navigate the food allergy terrain while keeping our children’s friends safe (and bellies full!).

- Susannah and the Allergy Amulet Team

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