According to local news reports, Tanner Henstra, who also had asthma, was at a friend’s house last week when he took a pretzel from a bowl and popped it in his mouth, not realizing these pretzels were filled with peanut-butter. His mother, Stacie Henstra, told The Salt Lake Tribune that her son spat out the pretzel as soon as he tasted peanut, but the allergic reaction had begun. His tongue and throat began to swell.

Stacie Henstra said Tanner usually carried an epinephrine auto-injector with him, but he did not have the emergency device with him at his friend’s house. She also said that the boy, who had been diagnosed allergic as an infant, had never needed to use one before.

Tanner did have some other allergy or asthma medicine with him, which he took immediately before calling his mother, who is a nurse, to come pick him up.

“He sounded worried but otherwise OK,” Stacie Henstra told the Tribune. But during the drive home, Tanner began to have trouble breathing. When they got home, about four minutes away, a neighbor came outside and performed CPR on Tanner while his mom ran inside to get the EpiPen.

She gave him the injection, but it had little effect. He was transported to a local hospital in St. George (which is north of Las Vegas), then to a larger hospital in Salt Lake City. After two days in hospital, Tanner was removed from life support.

Young Tanner’s death adds to a tragic and concerning list of children and teens who have experienced fatal anaphylactic reactions this spring. (See our report: Tragic Spring: 3 Food Allergy-Related Deaths)

Allergic Living reminds readers of the need for constant vigilance with food allergies. Most important of all, we remind you that anaphylaxis can progress swiftly and that the drug epinephrine is most effective when used immediately. Please take a moment to review our emergency procedures slideshow – Six That Save Lives.

See also: The Salt Lake Tribune’s full report.

A fund has been established to help Tanner’s family pay for hospital and funeral expenses. Donations can be made here.

posted: April 26, 2013

Job:

Allergic Living’s Gwen Smith: Julie, how did you first become aware of your child’s food allergies?

Julie Bowen: I was at work on Boston Legal and my husband was at home. He sent me a text saying, ‘I think we have a problem with our son and peanut butter.’ I said, ‘but he’s had it before,’ and then he said – ‘and he got stung by a bee’. And I was thinking, ‘What is going on over there?’

AL: You mean he was stung at the very same time he was reacting to peanut butter?

JB: Well, it is California and our doors are open all the time. So he [her son Oliver] had wandered out eating peanut butter and was stung by a bee. I was one to think this was no big deal until my husband sent me a picture of our son’s face, which was clearly in distress. It was swollen and disfigured.

My husband rushed him off to the emergency room and he was treated with epinephrine, and after that we learned that Oliver had allergies to all sorts of nuts and peanuts and probably also to stinging insects – but that’s a different series of tests.

After the anaphylactic reaction, I know that my job is to be aware and to be prepared for the next reaction – whenever that may be.

AL: These days you’re a big TV star, you’ve won a second Emmy and the show is a huge hit. But facing anaphylaxis, is that the great leveler?

JB: You know, I think being a parent is the great leveler. People often ask me how my life has changed since Modern Family. And I say, ‘Having three kids in three years was a much bigger change than having a lovely, lovely job.’

AL: What ages are your kids?

JB: Oliver is the older boy and we have twin 3-year-old boys. [So far, no life-threatening allergies have been diagnosed with the twins.]

Next: Bowen’s decision to get involved in the “Get Schooled in Anaphylaxis” campaign.

These included:
•  making any accommodation request of the airline;
•  getting flight crew to make an announcement asking fellow passengers not to consume peanuts or nuts;
•  requesting a peanut- and tree nut-free buffer zone;
•  asking for a peanut- or nut-free meal;
•  wiping off the seat’s tray table;
•  eating only food brought from home;
•  avoiding using the airline’s pillow or blankets;
•  and requesting a certain section of the cabin (not as significant).

Greenhawt and his colleagues found that of the 3,273 participants from 11 countries who took part in the survey study, 349 reported having an in-flight reaction.

“Looking at those who reported a reaction, there were clear differences in what was asked (of the airline) and what wasn’t asked,” he says. So the allergist sees a definite benefit of informing the airline of a serious food allergy.

The study, published in the Journal of Allergy and Clinical Immunology in Practice, involved participants in the United States, Canada, Australia, New Zealand and several countries in Europe and Asia.

Greenhawt acknowledges that many airlines will not offer accommodations such as a PA announcement asking fellow passengers to refrain from eating allergenic snacks.

However, “I do think pre-notification is important, regardless of whether it’s rebuked by the airline or not,” he told Allergic Living. “If you don’t ask and don’t make an effort, you will never receive anything. And certain airlines will be more receptive than others.”

He believes there are lessons from the mitigating behaviors for passengers, for doctors to communicate to patients, and for airlines. While beyond the scope of his study, he agrees that airline allergy policies designed to protect a minority of people, no matter if reasonable, can cause controversy.

“But choices will have to be made at some point,” he says. “Every business wants customers to have a positive experience, and I do believe airlines are concerned about this [allergy risks], but it’s more a matter of not knowing what to do. Hopefully, an airline might also look at a study like this and see some solutions.”

One thing that might grab their attention in this international study is that, among American respondents, an astounding 61 percent reported not flying again after receiving a diagnosis (usually for a child) of a peanut- or tree nut allergy.

Next: Key Recommendations to Allergic Travelers

Known as sublingual immunotherapy, or SLIT, this treatment works by having study subjects take tiny, daily doses of an allergen – in this case, peanut – in steadily increasing amounts over an extended period of time.

The new study, published in the January edition of the Journal of Allergy and Clinical Immunology, involved 40 peanut-allergic patients between the ages of 12 and 37 in five U.S. cities. The subjects were randomly divided in half, with one group taking liquid drops containing peanut powder under the tongue and the other taking drops with a placebo.

After 44 weeks of the daily doses, 70 percent of those getting the peanut powder could tolerate at least 10 times more peanut in an oral food challenge before showing symptoms than they could have at the outset of the study. In a follow-up challenge at 68 weeks, they could tolerate about twice as much again. (Patients were also to be retested at 88 weeks.)

This suggests that longer treatment could lead to even better results. The end goal is to slowly build up tolerance until the individual is no longer sensitized to the allergen.

“It gives us hope that this type of therapy might be used in the future for some type of treatment,” Dr. Wesley Burks, lead author of the study and Chair of the Department of Pediatrics at The University of North Carolina, told Allergic Living.

But Burks is quick to acknowledge the hurdles that remain. First, the treatment was not effective for 30 percent of the subjects. He believes this has to do with finding the proper dosage for those individuals, which could be related to their specific immune and gastrointestinal systems.

He says it shows that more and larger studies are required before this type of treatment – currently only done with strict medical supervision – becomes widely available.

The second issue is that, after 44 weeks, the average amount of peanut one of the responding allergic patients could consume was still fairly small: 496 milligrams. That equates to about two peanuts (a single peanut typically contains 250 to 300 mg of protein).

The treatment “is not ready for practical day-to-day usage,” says Burks. “There is some efficacy, but it is not the right thing to do right now”.

Even if SLIT’s results are being measured in incremental successes, that is still significant and promising, especially when compared to the sole, current allergy treatment of strict avoidance of peanuts.

New research out of Australia holds great promise. A study team announced in December, 2010 that they had discovered fragments of peanut protein that may be the key component to a peanut vaccine that could be given by injection.

Allergic Living’s Lisa Ferlaino spoke with Dr. Robyn O’Hehir, the team’s leader and a professor of allergy and immunology at Monash University in Australia, about the discovery and what it means.

Why the focus on immunotherapy as a treatment for peanut allergy?

“Allergen immunotherapy is the only treatment that can actually change the natural course of allergic diseases. We know from the aero-allergens such as house dust mites and grass pollens, and even from bee and wasp venom, that allergy shots make a big difference in people’s lives. That’s what we’re striving for.

We also know that peanut allergy is becoming more common worldwide, and that people find traces of peanut in unexpected foods. That’s one of the reasons avoidance isn’t really sufficient.”

Peanuts have long been viewed as too risky for immunotherapy, too likely to provoke anaphylaxis. How do you address that?

“By studying the white blood cells of patients with peanut allergy, we’ve been able to narrow down the core epitopes – the critical fragments of peanut protein that drive the allergic response in people with peanut allergy – and we’ve identified ones that are too small to cause anaphylaxis. They won’t bind to IgE [allergy antibodies], but they’re big enough to kickstart the immune system to develop tolerance.”

Are these fragments parts of peanut’s infamous Ara h 1 and Ara h 2 proteins?

“Yes. We’ve identified the critical peptides [protein fragments] in Ara h 2, the major peanut allergen. That’s the one most associated with anaphylaxis. Ara h 1 is also important, and we’re well on the way to identifying the critical peptides in it, too.”

There are a few peanut therapies in the works. Is your research unique?

“There’s a lot of research in animal models [using mice], but our research looks at human white blood cells. That’s important, because peanut allergy is not a natural condition for mice.”

Next Page: More questions on the vaccine

Following are some key points from her interview with lead investigators Dr. Steve Taylor and Dr. Joseph Baumert of the Food Allergy and Resource Program (FARRP).

Bio information: Dr. Taylor is a food scientist and the director of FARRP at the University of Nebraska-Lincoln with degrees in food science and biochemistry. Dr. Baumert is a food scientist and co-director of FARRP, with degrees in animal science and food science.

Gwen Smith: Gentlemen, thank you for your time today. Let’s start with the bigger picture for AL readers: What is the purpose of establishing a safe level of peanut for the peanut-allergic?

Steve Taylor: The purpose would be to establish target levels for the food industry and for public health agencies such as the Food & Drug Administration to use to guide product labeling.

GS: And you’ve spoken before of the concerns for consumers with allergies in the family ….

Joseph Baumert: This is very important. What we see is with the proliferation of these precautionary or “may contain” labels. Without some benchmark level that regulatory agencies or food companies can go by to know when there is a legitimate need to use that type of advisory labeling, it continues to proliferate. It’s to the point now where consumers are confused as to whether there’s actual risk involved.

On the consumer side, as an endpoint, we’d like for those individuals to be able to feel confident that if a product has a precautionary label on it, there’s a definite reason that they should avoid. Whereas, if it doesn’t have that [may contain] label, it’s because it does not fit that benchmark dose below which the vast majority of allergic individuals would not react if they bought that product. That would open up a lot more choices for allergic consumers.

ST: I think you can appreciate the predicament the food company faces without thresholds. They really don’t want anybody getting sick from their product.

But without the guidance of thresholds, they may slap terminology like “manufactured on shared equipment with peanuts” or “manufactured in the same facility as peanuts”, or “may contain peanuts” on a whole litany of products where the risk of peanut exposure is really pretty small. Now, we have to make sure that it’s so small that there would be almost no risk of a reaction.

GS: Now if I’m the average parent of a peanut-allergic child, probably I’d probably contend that the safe level of peanut in a food product is zero. But for you two, as the experts on food science, you would say that, no, a level of zero isn’t possible. Can you explain to readers, who aren’t food scientists, why that’s so?

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

On March 9, parents of children enrolled at Edgewater Public School near Daytona Beach, Florida, called the media and staged a protest, angry that an allergy-management plan implemented by the school board to keep a 6-year-old peanut-allergic girl safe could take away from their children’s learning time – and that the child should stay home instead.

The events have galvanized the allergic community and underscore the importance of educating those who do not understand the challenges of daily living with a food allergy.

The new safety procedures

According to news reports, the allergy-management plan includes the following policies and procedure:

• Students must wash their hands at least twice a day (before entering the classroom in the morning and after lunch).
• Teachers must regularly wipe down desks.
• Peanut-free zones throughout the school campus and the cafeteria
• Snacks banned from the classroom; classroom parties must not include treats.
• Students were originally required to rinse out their mouths before entering the classroom, but this rule has reportedly been removed from the allergy-management plan; students now must wipe their faces with a wet cloth.

Allergy-management plans like this one are poised to become the norm. Earlier this year, President Obama signed the Food Allergy and Anaphylaxis Management Act (FAAMA), which calls for voluntary national guidelines to help schools manage students with food allergies.

In the past decade alone, the prevalence of food allergy, once an uncommon condition, has skyrocketed. The Food Allergy & Anaphylaxis Network (FAAN) estimates that about 12 million Americans – 4 percent of the population – now contend with the disease. The Canadian rate of food allergy is estimated to be comparable. Peanut allergy alone has doubled in young American kids.

The backlash

Some parents of students enrolled at the elementary school argue that:

• The time it will take to implement the plan – hand-washing and desk-wiping, for example – will take away valuable learning time.
• The peanut-allergic student is receiving special treatment that their children don’t receive.

Parents are also up in arms about a peanut-sniffing dog that was brought into the school over spring break.

“You can’t take peanut butter and jelly – or any right – away from my child,” yelled one angry protester to the mother of another peanut-allergic child at the school. “Keep your child at home!”

Along with the protest, which has been covered by local and international media, the parents have been handing out flyers to the community.

What the school board says

The school board argues that:

• Under the Americans With Disabilities Act (ADA), the district is legally obliged to accommodate the student’s medical needs.
• The policies put in place, such as regular hand washing, are good hygienic practices that need not be overly time-consuming.
• The policy regarding classroom parties being free of treats or snacks was a decision made by teachers for general health and wellness reasons.
• The peanut-sniffing dog, according to one report, was brought in to comply with the student’s ADA medical plan, which called for a dog to search the school. Schools are required to comply with such plans.

The allergy community’s response

Not surprisingly, the allergy community has been watching the situation closely.

On March 23, FAAN and the Food Allergy Initiative (FAI) released a joint statement that highlighted the need for increased education about the challenges of living with a food allergy. The organizations also expressed concern about the psychological impact of the protests on the first grader: “Studies have shown that living with a life-threatening food allergy can have a psychological impact, and a public display in this manner may have a detrimental effect on children with food allergies.”

Parents of children with food allergies are also expressing their views on the Florida events. “Here we sit, on a fence, between a rock and a hard place, because of unawareness and ignorance,” says a member of the Allergic Living Forum. “How much noise to make to keep our kids safe is such a hard question.”

“The [protesting] parents definitely took it too far,” says another Forum member. “If their concerns weren’t being addressed, they themselves could have contacted FAAN to see if they could recommend a compromise. Picketing and protesting one child is insane.”

The Allergic Living Facebook page has also received a lot of feedback on the issue. “It interests me that the main complaint from protesting parents is that hand and mouth washing takes away from education time,” says one of Allergic Living’s fans. “Handwashing is a normal and accepted way of cleaning yourself after eating, so I am baffled as to why parents would not want thier kids to learn the importance of that. Further, kids will learn about community support for the safely and wellbeing of people who live, play, learn and eat within their community.”

As well, members of the community are showing support on the Facebook page here for the family of the child who is at the middle of this allergy battle.

Posted March 28, 2011

Allergen

Where It Hides

Alternate Names

• chocolate/candy bars-barbecue sauces
• Asian-style dipping sauces (particularly Szechuan)
• curry sauces
• egg rolls, spring rolls
• trail mixes
• Ice cream (peanut butter flavor or “Reese’s” ice cream)
• Certain body-care products and makeups use peanut derivatives or peanut oil
• dog food or biscuits
• non food: bird seed, bird feeder, ant traps

• arachidic acid
• arachis oil
• peanut oil
• peanut butter
• hydrolyzed plant protein
• hydrolyzed protein
• hydrolyzed vegetable protein
• mandelona nuts
• cacaheuta
• Earth nuts
• ground nuts
• goober nuts
• mani
• Nu-Nuts
• ontjom or onchom (Indonesia)
• Valencias (Valencia is a variety of the peanut plant.)
• kernel paste
• mandelonas

Sources:
-ImmunoCAP
-Canadian Food Inspection Agency

How were we to wrestle her hard-earned nutty goodies away without a pitched battle? Somehow, our heartfelt “it’s for your own good” speech was always lost on her, and tears would make little paths through her face makeup.

We needed a plan. And so, the Great Pumpkin came to the rescue. It was a fine tale I concocted, an allergic cross between the famous Charles Schulz pumpkin patch tale and the Easter Bunny.

In my version, a large, orange benefactor visits children with nut and peanut allergies each Halloween. On Halloween night, Mom and Dad would leave all the nut-tainted candy in a bag in the front hall, and the Great Pumpkin, pleased with this sacrifice, would leave a gift in its place.

A tradition was born, and it was a good thing, as Geneva and her younger sister Paris didn’t eat their own weight in candy. Instead, they would receive a puzzle or a movie.

The Great Pumpkin, of course, grew fat at her desk at the office, which wasn’t so good, but let’s move along, shall we, to the year of the orange one’s near miss ….

***

It was the Halloween of 2003, a brutally cold, wind-howling prairie evening in Saskatoon, with temperatures plunging to -25 degrees C (-13 degrees F).

Geneva was dressed as a punk rocker with fuzzy purple earmuffs to match her purple hair (it was just too cold to be cool), and Paris was dressed up as a leopard (basically a spotted snowsuit). My husband Bruce was dashing as a green-skinned demon with red horns.

I stayed home to dole out treats, while the kids and my husband headed out, returning after just 45 minutes with an astonishingly large bag of goodies.

We read all the labels, culled the offending candies and at the end, hung a hefty sack inside on the front doorknob for the Great Pumpkin. The kids trundled off to bed. And so did we.

In the morning, Geneva came bounding into our room in tears. “Mom, the Great Pumpkin didn’t come last night!”

Ack! I knew I had forgotten something when I turned off the lights the night before. Blinking the sleep from my eyes, I tried to think quickly.

“Oh, dear. That’s my fault, sweetie, I locked the door last night and … he couldn’t get in. I usually leave the door open on Halloween so he can come inside.”

Geneva looked crestfallen. By now her sister had also shuffled into our room. Geneva relayed the bad news. Paris’s face fell.

“You know, I bet he left your present with our pumpkins on the front step,” I said. “Why don’t you girls go get dressed in some warm clothes and we’ll go outside and look.”

The kids dashed to their rooms. “Wear lots and lots of clothes!” I yelled.

I elbowed Bruce in the ribs. “Quick. We don’t have much time!”