The view from the honeymoon suite

When we set out to select a location for our first vacation in more than two years, we had some very specific parameters.

We live in Pennsylvania and our goal was to escape the cold wintery weather, so our destination had to be a place which had beach-friendly temperatures during spring break, and also had access to an ocean.

In the past we had visited Mexico or Aruba, but when my now 16-year-old daughter’s anaphylactic food allergies (milk, shellfish, egg, walnuts, potato, tomato, eggplant and pepper – including spices from peppers) made it too risky for her to eat food prepared by anyone but us, we stopped taking vacations altogether.

After two years of vacation hiatus, we were seriously craving some beach time. We wanted to find a destination within 20 minutes of a hospital – preferably a North American hospital – and in close proximity to a grocery store that would have a variety of foods my daughter could eat and prepare easily. And we had to be able to read the food ingredient labels – familiar brands would be easiest.

Because she or I cook every breakfast, lunch and dinner, every day of the year, we also didn’t want to spend a lot of time preparing meals. Part of our need for a vacation came from the magician-like skill we had to apply every day in making delicious food that both she and the rest of the family could enjoy. She is very experienced at bringing her own food to restaurants, so that’s what we planned to do on vacation.

We started by checking temperatures. No beach location in the U.S. offered the consistent mid-80′s of the Caribbean. Southeastern Florida seemed to be the warmest beach location we could find.

The next important consideration for us was that we wanted to be right on the beach – not across highway A1A from the beach. There are probably a lot of places where we could have rented a house or a condo, but we’re not experienced with the ins and outs of private rentals.

Also, there didn’t seem to be any resort that offered condos on a beach that would be warm enough during spring break. Amelia Island, near Jacksonville, Florida, has great condos that are in close proximity to groceries and are on the beach, but it’s not 80 degrees there in March.

There were other locations on the West coast of Florida that offered condos, but again they were not as warm or easy to get to, or weren’t reasonably priced during spring break. We eventually settled on Fort Lauderdale.

Next page: The ideal location found

On April 7, 2013, Adrian Gutierrez, an 8-year-old boy from Monmouth County, New Jersey, experienced a severe reaction and died in hospital. The reaction came over the boy on his family’s drive home from church, following a visit to a coffee shop. The boy’s mother suspects that Adrian, who was allergic to dairy and peanuts, may have accidentally sipped from his brother’s hot chocolate with milk. (Adrian had ordered a hot chocolate with  soy milk.)

One news report stated that an epinephrine auto-injector was administered to the boy. However, it is not clear whether the shot was given immediately after the reaction began, or  whether there was a significant delay. In the case of a severe allergic reaction, epinephrine should always be administered right away, as the drug can be less effective if a reaction has progressed.

On March 13, 2013, Maia Santarelli-Gallo, a 12-year-old girl from Burlington, Ontario (in Canada), appears to have experienced anaphylaxis during an outing to a shopping mall with her father and older sister. Local news reports suggest Maia had reacted to dairy and egg in the past, but her parents had been told she was intolerant rather than allergic, and she had never been prescribed an auto-injector. At this point, it is not definitively known what caused the reaction, but milk is suspected – since the last thing Maia ate was an ice cream cone.

Asked to comment on the girl’s fatal reaction, allergist Dr. Susan Waserman expressed profound concern to the local press. “It speaks to the need for proper diagnoses, proper education, how the family was told to handle this supposed food intolerance,” she said, adding that better support for the family would have led the girl to have an auto-injector. “The whole community feels terrible when we feel something like this,” she said.

On March 8, 2013, Cameron Groezinger-Fitzpatrick, a 19-year-old from Plymouth, Massachusetts, died from his peanut allergy while home from university for spring break. His family has said that a friend had offered him a cookie, which was supposed to be peanut-free but turned out to contain peanut butter.

According to ABC News, Cameron’s mother was told over the phone by a 911 operator not to administer an expired EpiPen which was in a nearby cupboard. Cameron’s current auto-injector couldn’t be found in time, as he had not finished unpacking for his visit.

“I didn’t know you can die from nut allergies. I feel foolish,” Robin Fitzpatrick, Cameron’s mother, told ABC News.

These tragic events reinforce the need for allergy education and having epinephrine always ready to access for those with food (and sting) allergies.

In more positive news, several states are beginning to see the importance of readily available epinephrine and are passing bills that allow doctors to prescribe “stock” auto-injectors to schools. These devices can used in emergencies for students who don’t have an auto-injector on school premises (in some cases, it may be a first allergic reaction).

Kentucky, Nevada, Oregon, Georgia and Tennessee have all seen recent progress in such bills in their state legislatures. In fact, Kentucky Governor Steve Beshear will be holding a formal ceremony to sign that state’ stock epinephrine bill into law on April 22, 2013.

I can tell you exactly where I was when the field of allergy and immunology first stole my heart. I was in my first year of medical school sitting in an overly cool classroom taking notes as fast as any human hand could. My pathology lecture was just ending and immunology was up next. I rubbed my sore fingers and prepared to write down, verbatim, the next lecture.

But shortly after my professor started to speak, I realized that I had completely stopped taking notes. I had allowed myself to be drawn into the story that she was weaving, a story of T cells and B cells and their physical and chemical conversations with each other. It was amazing.

Little did I know that she was introducing me to a cast of cellular characters that would soon become not only important for me to pass my next immunology test, but also to complete my subsequent fellowship training and to my understanding of the mechanism of food allergy, an immunological disease that would affect three of my four children.

In 2005, after completing a pediatric residency, I started my fellowship in the field of allergy and immunology at the Children’s Memorial Hospital in Chicago. I had a 7-week-old baby boy at home so I was knee-deep in motherhood, but I was ready. I was excited to finally be seeing patients with the allergic and immunological disorders that I had been so interested in during medical school.

These diseases, including chronic sinusitis, seasonal allergies, and immune deficiencies, were all challenging and interesting, but what drew me in the most was food allergy. There was something so cruel and senseless about a disease that denies a child a bakery cookie – it made me want to break its code.

Patient Emotions
As fellows, we were taught to take a detailed history of the allergic reaction from the patient and the parent, paying exquisite attention to what food was ingested, the timing of the ingestion in relationship to the symptoms and what symptoms occurred.

Patient histories would often become complicated, a fusion of facts and feelings. We would then perform skin-prick testing with the suspected food protein and draw blood for the same allergen. Combining the history and the results of the testing, a diagnosis was made.

We would review an allergen avoidance sheet with the family, explaining the importance of reading food labels, and discuss an emergency health-care plan, teaching the families how to recognize and treat an allergic reaction. We provided them with a short list of support services and asked them to follow up in one year. It was a good system, at least as far as I knew.

By the end of my first year of fellowship, we had twin boys (yes, we had three boys in 13 months!) and one of them, Gino, literally had hives on his skin only a few days after he was born. He would soon be covered in itchy, bleeding eczema and more often than not, vomit, so I made an appointment with an allergist.

Next page: The diagnosis: a powerful blow

NHL & NBA owner Ted Leonsis

From hanging out with movie stars to schmoozing with international royalty, Ted Leonsis enjoys a pretty glamorous lifestyle. Still, days spent on planes, film sets, galas and sports arenas present a special challenge for the Internet executive turned sport-team owner and filmmaker. That’s because Leonsis lives with life-threatening allergies to peanuts and tree nuts, not to mention environmental allergies and asthma.

Leonsis, who’s best known for owning the NHL’s Washington Capitals and the NBA’s Washington Wizards, spoke to Allergic Living’s managing editor Kim Shiffman and revealed a lot about balancing an on-the-go lifestyle with his severe allergies.

Exactly what are you allergic to?

I’m allergic to every nut imaginable, plus cats and dogs, dust, mold, all the pollens, trees and grass. I’ve got a litany.

When were you diagnosed?

When I was a baby, my mom knew something was wrong with me because of how I would react to some foods. It was hit or miss, and she just thought, “Boy, guess he didn’t like that.”

Then one day I went shopping with her at Christmas, and they were roasting nuts in the store. The steam was going up in the air, and as we were walking down the aisle, I went into anaphylactic shock. An ambulance came and they took me to hospital. My mother didn’t know what had happened, but the doctor asked a lot of questions, sent me for skin tests and that’s when they realized how much allergy I had.

What’s the worst allergic reaction you’ve had?

One I remember that was really, really bad happened when I was 9 or 10. I went to a sleepover at a friend’s summerhouse, and he had cats. It activated a really bad asthma attack; I couldn’t breathe and got a bad headache. They took me to the hospital.

But more recently, in 2006, I was producing a movie – Woody Harrelson was in it and a bunch of other movie stars. We were on a studio lot in L.A. and it was late at night, maybe 10:30 p.m. Because it had been such a successful shoot, the crew ordered chicken-salad sandwiches from some famous L.A. restaurant. This is what they always did to celebrate.

The sandwiches came, and I took one. After a couple of bites, I noticed something crunchy. It was cashews. Immediately I started to get hives on my hands, then my ears, then my tongue. And I thought, “Here it comes.”

Next page: “They’re going to find me dead in this bathroom!”

At age 7, Alexandra took such delight in being a Girl Scout Brownie. She wore her Brownie vest proudly, earned “Try-It” badges with enthusiasm and sold an impressive number of cookies during the annual sale. The kid was as dedicated as anyone else in her Brownie troop and she deserved this summer adventure. But I wasn’t sold. Was the camp ready for a child with life-threatening allergies to peanuts and tree nuts? Would she be safe?

Since her food allergy diagnosis at age 4, I had vowed to support Alexandra in enjoying normal life activities. Still, summer camp presented several unknowns, including a distant location and a new group of caregivers. Plus, my daughter was still very young. I argued with myself about the pros and cons of each decision. If I let her go to camp, was I risking her health? If I didn’t let her go, was I risking her self-esteem?

Before my husband and I had made a decision, I happened to be chatting with another Girl Scout mom. She was concerned about camp, too. “My daughter is so small,” she explained. “I’m afraid if she sinks in the pool, no one will see her.” That’s when it hit me. Every parent worries about something. Worrying is not exclusive to parents of kids with food allergies. No matter what your situation, it’s not easy to let go. I decided to learn more about the program.

What I found out was encouraging. The camp didn’t serve peanut butter, employed a full-time EMT and trained its staff in EpiPen usage. After more discussion, we decided to give it a go.

When the first day of camp rolled around, my daughter’s eyes sparkled with happiness as she boarded the bus and waved goodbye. And when I picked her up at the end of her first day, she was tanned, tired and happy. I relaxed just a little. Maybe things would be just fine.

But on the second day, the phone rang. I could see it was the camp. My heart raced as I choked out a greeting. “This is the medical office,” said the voice on the line. No! My heart was pounding so hard that I barely heard the next sentence. “Alexandra scraped her foot on the bottom of the pool and was bleeding, so we gave her a Band-Aid. It’s camp policy to report any injuries that result in bleeding.”

I exhaled and hung up. Minor bleeding was definitely preferable to a food allergy emergency. A scraped foot? No problem.

On Day 4, another call from the medical office. I tried not to panic. Turns out, it was just another minor injury, once again resolved with a simple Band-Aid.

On the last day of camp, the Girl Scout leader called me from her cell phone. I was sweating as I answered, convinced that this had to be “The Call.”

“Is Alexandra OK?” I blurted out. “She’s fine!” was the cheerful reply. Apparently, my daughter had been offered a snack at a campfire celebration and wanted to double-check with me before eating it. I was giddy with relief as I thanked the troop’s leader and gave a thumbs-up to the treat.

When I hung up, I couldn’t do anything but laugh. After all of my concern and repeated phone calls from camp, we had made it through the week without a single food allergy emergency. Even better, I now had solid evidence that my daughter was checking foods before eating them – a huge step in her food allergy independence.

That summer, we both gained a lot of confidence about the future. Our camp experience taught me that even though food allergies require planning ahead and certain precautions, they do not define my daughter.

Another important thing I learned? Along with the EpiPen, never forget the Band-Aids.

Jenny Kales is the author of the blog The Nut-Free Mom and a freelance writer who covers parenting topics. She and her husband and two daughters live near Chicago. To comment on this article or to suggest your own Our Story, e-mail us at editor@allergicliving.com.

First published in Allergic Living magazine.
To order that issue or to subscribe, click here.

© Copyright AGW Publishing Inc.

Read also:

- Managing a Peanut Allergy
- Dating with Allergies
- Flying Tips
- Nut Allergies at School

Air Canada unveiled its first formal food allergy policy on December 2. As reported in Allergic Living magazine, it provides for passengers with peanut or nut allergies to request a small buffer zone to lessen the risk of allergen exposure.

Flight attendants will ask other passengers sitting in the buffer zone to avoid eating nut or peanut products and passengers seated in this zone won’t be offered any snacks from the food cart that contain nut products.

For economy class, a buffer zone will include the row of seats the allergic person is sitting in, as well as the row in front and behind. It does not include those sitting across the aisle. In business class, the buffer zone be simply the bank of seats the person is sitting in.

It’s important to note that arrangements for a buffer zone on an Air Canada flight must be made in advance. The airline’s policy requires those who wish this accommodation to:

• Get a “Fitness for Travel” medical form completed by a physician to confirm the nut or peanut allergy.
• Book at least 48 hours in advance with Air Canada Reservations, advising the agent that you have a “Fitness for Travel” form ready to fax in.

(The airline’s new policy says it “will also make a reasonable effort to accommodate” if a buffer zone request is made in under 48 hours, but Allergic Living strongly recommends making the request farther in advance.)

In a recent conference call with two senior Air Canada representatives, the airline made it clear that the implementation of buffer zones and a formal policy is in response to directives from the Canadian Transportation Agency.

In an October decision on how to accommodate nut- and peanut-allergic passengers, the CTA asked the airline to either agree to the buffer zone concept or “submit a proposal for a reasonable alternative that is equally responsive to the needs of persons disabled by their allergy to peanuts or nuts”.

Air Canada opted for the buffer zone. But in its new policy, which can be read in its entirety here, Air Canada makes clear that on international flights, even within a 3-row buffer zone, it can’t be certain that meals served are nut- or peanut-free, which is something to be aware of.

Air Canada lawyer Louise-Hélène Sénécal spelled out in a letter to the CTA that while it was possible to identify and not sell pre-packaged and labeled snacks containing nuts in the buffer zone, that wasn’t the case for meals on international flights, nor for meals in executive class on all flights.

“The largest worldwide flight caterers, namely Gate Gourmet and LSG Skychef have confirmed that no such guarantee can be made since their own assembly lines as well as those of their main suppliers (e.g. for the casseroles) also source peanut and nut content,” she wrote.

Next page: Will It Fly?

Allergen

Where It Hides

Alternate Names

• baked goods, crackers
• cereals
• granola bars, trail mixes
• marzipan
• calisson (marzipan-type candy)
• Pad Thai
• satay sauce
• curry sauces
• chili and trout amandine
• gianduja and giandula (chocolate blended with hazelnuts)
• tree nut oils
• pralines
• salad dressings
• spreads: almond paste, nut butters, chocolate-nut spreads (Nutella)
• nougat (e.g. torrone)
• pesto (often has pine nuts)
• liqueurs (e.g. Amaretto usually contains almonds)
• natural flavorings and extracts (e.g. almond extract)

• anacardium nuts
• filberts (hazelnuts)
• nut meats
• pinon
• Queensland nut (macadamia)

Sources:
-ImmunoCAP
-Canadian Food Inspection Agency

Baking at Its Best

With a team of 20 testers to assist, Pascal mixed, baked, tweaked and rebaked. Everything had to live up to her standards. The result is a truly superb recipe collection and must-have for those with – or without – diet restrictions. Celestial Arts, $29.95. See Allergic Living‘s interview with Cybele Pascal. – Gwen Smith

Enjoy Life’s Cookies For Everyone!

Leslie Hammond and Betsy Laakso; Fair Winds Press; $21.95

Warning: Do not peruse while hungry; you may try to eat the scrumptious pages. This book is a great idea: the manufacturer known for its snacks, bars and breakfasts without top allergens (including gluten) teamed up with Leslie Hammond, a culinary expert with an allergy-friendly focus, and a collection of 150 awesome safe cookie recipes was born.

Young children will be over the moon for: Gimme S’more Bites, the Fantastic Fairy Cookies and Caramel-icious Apple Cookies. And for your own safety, don’t stand between allergic women and the Especially Expresso Brownies and Ludicrously Lemon Bars. – Gwen Smith

Go Dairy Free

Alisa Marie Fleming; Fleming Ink; $19.95

Author Alisa Marie Fleming calls this a “guide and cookbook,” and what particularly impresses is the depth of the former. This is no quick gloss-over: it’s a comprehensive, must-have resource for those avoiding dairy. The author, who’s well-known for her website Godairyfree.org, walks the reader through the dairy allergy basics and offers extensive lists of both hidden dairy sources and ingredients that will inspire.

There are thorough sections on dairy substitutes (homemade margarine, anyone?) and creative recipes, from soups to salads to curries and Make Your Own Pizza (without cheese.) Baking without dairy is usually a challenge, but Fleming rises to the task with the likes of Coconut Fudge Brownies, Orange Chocolate Chunk Cup- cakes, and Pumpkin “Cheesecake”. – Gwen Smith