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

“With Motion M-230, we want to look at how we can help coordinate a thoughtful government response to anaphylaxis, to raise public understanding of life threatening allergies, and to provide greater safety for a growing number of Canadians and their families,” explains MP Dean Allison, who put forward the motion.

The motion reads as follows:

“That in the opinion of the House, anaphylaxis is a serious concern for an increasing number of Canadians and the government should take the appropriate measures necessary to ensure these Canadians are able to maintain a high quality of life.”

Originally put forward in 2010 as M-546 by Allison, the MP for Niagara West-Glanbrook, the motion was lost with the dissolution of that year’s parliament. Now called M-230, the motion will be debated in the House of Commons on April 19, 2013 at 1:30 pm.

The Canadian Anaphylaxis Initiative (CAI), which has worked alongside Allison to promote M-230, is urging Canadians to get behind the motion. They can do so by writing, telephoning or visiting their MP to explain how important this motion is, and asking whether their support can be counted on. (If you are in the Ottawa area, join in by getting a gallery pass for the debate through your MP’s office.) If you can’t attend, watch the debate live at CPAC.ca.

Related to the motion is the CAI’s five-point policy approach, which was debated alongside it in March 2011 and involves the following:

• Federal Coordination – of programs and services dealing with anaphylaxis and food allergy
• Coordinated Awareness Campaigns – both targeted and general public information initiatives
• Long Term Commitment to Research – a strategic response and more dollars for research
• Improved Allergen Labelling – for foods, drugs, cosmetic and personal care products
• Improved Transportation Safeguards – airline and public transportation policies that reduce risk for food allergic passengers

For more information, visit the Canadian Anaphylaxis Initiative.

The discussion around this article has become a wonderful opportunity to explore with our patients their concerns about the real risks of food allergy, their hopes for a cure, and their understanding of where things stand in that search for a cure. Since you may have some of the same questions, allow me to review some key perspectives and hopefully find common ground on which we can all agree.

Those living with food allergy are all too aware of the risks of accidental food allergen ingestion. However, we strive to provide our patients a balanced approach, where we encourage vigilance at reducing those risks, but work to prevent that from evolving into debilitating anxiety. This requires a clear understanding of the real risks of food allergy.

One area fraught with ambiguity for patients is food allergen labeling laws. The Food Allergen Labeling and Consumer Protection Act (FALCPA) does not permit any of the eight major food allergens to go unlabeled as ingredients, regardless of the quantity present. However, what is very troublesome to families is that FALCPA is silent on the issue of cross-contact.

Cross-contact can and does sometimes occur in manufacturing.  There is no guidance given to manufacturers as to when a precautionary label (often referred to as a “may contain” warning) should be included.  Fortunately, efforts are under way by the Food and Drug Administration (FDA) to help reform how manufacturers use these precautionary statements.

Another important point of discussion raised by the Times article is the true risk of anaphylaxis due to skin exposure to food allergens. In the Spring 2013 issue of Allergic Living, Dr. Scott Sicherer addresses this question (pages 24-25), explaining that anaphylaxis from skin exposure is very unlikely because the skin barrier prevents the protein from entering the blood system. So, for most with food allergy, playing a game with a ball that had briefly contacted an allergen would not be expected to pose a significant risk of anaphylaxis.

Also of concern to patients was the reference in the Times article to a mortality rate from food anaphylaxis of 1 per 1,000 for “severely allergic” children. It is critical that patients understand that this figure was derived by comparing the estimated number of food allergy deaths in the U.S. to the number of annual emergency department visits for food anaphylaxis. Another approach favored by many puts the risk at more than 100 times lower, or five to 10 per one million.  This approach has the advantage of making the comparison to the total food allergy population in the U.S.

Undoubtedly, even one death from food allergy is a tragedy because it could have been prevented. For those with food allergy, it is important to understand that this risk can be significantly decreased by exercising vigilance in avoiding food allergens and always having access to epinephrine.

Another area of discussion after the Times article revolved around the emotional toll that food allergies can take on families, particularly when severe allergic reactions have been experienced in the past. Our goal is always to help families work through their fears and arrive at a place where affected children feel safe and in charge of their allergies.

Certainly, the psycho-social impact of food allergy is real and, as research is beginning to demonstrate, often detrimental. But there is help, and fear should not be accepted as the norm for those with food allergy. For times when anxiety becomes overwhelming, a counselor, psychologist, or psychiatrist can teach specific coping mechanisms.

While no one would choose to have a food allergy, some of our young patients have gained great empowerment from their experience – a sense that if I can manage my food allergies, I can do anything. So, as the name “Allergic Living” epitomizes, a balanced approach is important to ensure that having a food allergy does not prevent one from truly living.

Next: Community’s Role in the Quest for a Cure

Those behind this discovery were caught off guard: “We were shocked. We were just floored,” said Kim Mudd of Johns Hopkins University, lead author of the study. “It was quite clear that some of these purposeful exposures were against medical advice.”

Researchers from five leading allergy clinics were trying to get to the motivation behind why 8 percent of 512 families with food-allergic kids had reported in an earlier study that their young children had been purposely exposed to a food allergen. The results from a new questionnaire survey with this group were presented at the 2013 AAAAI annual meeting. Among the 40 families in question (who often gave more than one reason for a food exposure):

• 46 percent reported believing that small exposures to an allergen would not cause symptoms;

• 42 percent experimented with the allergenic food to see if the child’s allergy had resolved;

• 38 percent saw that a child was now tolerating either baked milk or egg and decided to try it in an unbaked form;

• 29 percent said they’d given a food because the child hadn’t had symptoms on a previous exposure;

• 25 percent believed that small exposures would speed the resolution of the allergy;

• 24 percent gave a food because their child’s past reaction hadn’t been severe;

• 15 percent knowingly gave the food because they didn’t believe the diagnosis of food allergy;

• 14 percent thought an allergy test showing decreased IgE antibodies meant the allergy had resolved;

• 8 percent gave the food to “test” the severity of their child’s reaction;

• 4 percent were influenced by something they’d read;

• and 2 percent tried the food at home while waiting for an oral food challenge with the allergist.

The study, funded by the Consortium of Food Allergy Research (CoFAR), notes that feeding an allergen to a child is against medical advice; kids with allergies are supposed to avoid their allergen at all times. The researchers concluded that “these purposeful exposures to food reflect potentially dangerous misconceptions about food allergy among parents and other caretakers.”

Next: Who was exposing the children to allergens

Click here to see Allergic Living‘s full coverage of the 2013 AAAAI allergists conference.

University of North Carolina researchers compared data on the weight and body mass index of 245 food-allergic children between the ages of 1 and 11 years old against data on other children of the same age range. Data were also compared between the children with allergies and children with cystic fibrosis or celiac disease, two conditions which are also known to inhibit growth.

It was discovered that after 2 years of age, children with any food allergy had lower weight and BMI than those without allergies, regardless of whether they had celiac disease or cystic fibrosis. Researchers also discovered that having a milk allergy in particular meant even less weight gain, as did having multiple food allergies.

“The impact of food allergies was particularly pronounced when it involves cow’s milk or when it requires the elimination of more than two foods,” Dr. Brian Vickery, the study’s lead author, told a news conference. “Milk allergic children aged less than 2 were particularly vulnerable to growth restriction, with weight and BMI significantly lower than in those children with other types of food allergies,” he said.

Vickery said physicians need to do nutritional assessment with children in either of the two groups, and consider whether supplements are required. He also recommended nutrition counseling for those dealing with children with milk allergy or multiple food allergies.

“We feel that health providers should counsel patients and caregivers about the growth-related risks of the elimination diets that are used to treat food allergy, and ensure that families are excluding only the foods that are medically required,” he said.

See more news from the AAAAI 2013 conference here.

In fact, three to five years after completing an OIT study, Johns Hopkins University researchers said that many participants were more reactive to cow’s milk than they had been early in the course of treatment.

The team presented results from a follow-up study involving 32 children from two clinical trials in which they were fed tiny, then increasingly larger amounts of milk. These patients completed the milk oral immunotherapy, then underwent an oral challenge test for tolerance and were sent home with individualized instructions for daily milk consumption.

It turned out that 38 percent of the test subjects (12 children) who were thought to be desensitized were having frequent symptoms from milk three to five years after the trial had ended, while 22 percent had occasional symptoms. Only 25 percent of the participants were able to consume milk without symptoms. (The other 16 percent had ceased having milk.)

In terms of the type of reactions being experienced, 31 percent reported systemic symptoms (characterized as more than an itchy mouth or stomach ache) and 19 percent had symptoms serious enough to require an epinephrine auto-injector.

At a news conference at the AAAAI meeting, Dr. Robert Wood, director of pediatric allergy and immunology at Johns Hopkins, did not mince words: “Some of the more dramatic failures had looked like absolute successes in the study. They were tolerating huge amounts of milk; they were about as close to ‘cured’ as we could imagine,” he said.

The study shows that 22 percent of the children had returned to either milk avoidance or minimal consumption of it. “The main thing that I’ve come to believe is that they were not as protected as we believed in that they self-restricted [consumption] because they didn’t like the side effects the milk was putting them through,” said Wood.

So have the researchers lost hope? Not at all. It appears more a case of figuring out where the research goes from here for some patients who lose newfound allergy protection easily.

“Learning something that’s disappointing is why it’s called research,” Wood noted about the study. As he told Allergic Living in an interview: “To go from where we were 10 years ago, which was to say that ‘we probably can’t give food to a highly allergic patient safely at all,’ to say now that some patients are having extremely good outcomes, this leaves us with encouragement that the long-term potential is very real.”

Dr. Wesley Burks, one of the leaders on OIT research from the University of North Carolina, summed it up well when he said: “There are a lot of encouraging results, but there’s also a lot of work to be done. This isn’t really ready for treatment – we’re not there yet.”

There are some intriguing bigger questions on where research will head to get “there”. Allergic Living will be examining these issues in the Summer edition in a special report on food allergy treatment research. We hope you and your family will find it enlightening.

Read more news from the AAAAI meeting here.

See Also: Parents Exposing Kids to Their Allergens

• Pumpkin Bowling – a few rolls of toilet tissue, a small pumpkin and some black, and your party will get rolling.

• Fabulous Shadow Puppets – Susan found these at the Chezbeeperbebe blog, complete with downloadable templates.

• Halloween Printables – “Keep Calm and Carry Garlic”, “Say Boo and Scary On” at A Southern Accent blog. Plus plenty more printables at the It’s Written on the Wall blog.

• Homespun Spider Webs – created from trash bags and found at the How About Orange blog.

 • Halloween Tot Kit – games, puzzles and activities from Lawteedah.com.

• Black Cat craft – a witch’s favorite sidekick, easily made from a paper plate.

• Pumpkin Carving Templates – From the countess of crafts herself, Martha Stewart. Fortunately, her easy page.

See more of Susan’s Halloween craft finds at:

- OASG’s Pinterest page
- GotEpi4R page

The study, published in the medical journal Pediatrics (July 2012 edition), followed 512 infants between the ages of three months and 15 months over three years. The results were alarming: 72 percent of infants experienced at least one reaction during the test period, while 53 percent had at least two. The annualized reaction rate was nearly one per year, and the most common reason for a reaction was a lack of vigilance.

In 51 percent of the reactions, the food was provided by a caregiver other than a parent. What’s worse, in some cases the allergic reactions experienced were no accident: 11 percent of reactions to milk, egg, or peanut where the result of an allergen-containing food being “knowingly provided” to a child.

The researchers were taken aback by the finding: “We didn’t expect that anybody would do that,” says Dr. Scott Sicherer of the Mount Sinai School of Medicine, who was a lead investigator.

In fact, this behavior was discovered by accident: only after reading the questionnaires provided to parents did researchers find out this was occurring. It emerged that some people were self-testing their children for allergies; Sicherer stresses that such tests should not be tried outside a doctor’s office.

As well, epinephrine was only used in 30 percent of the 134 severe reactions that occurred. This was largely attributed to lack of education: 15 percent of parents or caregivers were either afraid or unsure whether to inject. Sicherer notes that epinephrine is the medicine of choice in a serious reaction, and a very safe drug to use.

Researchers continue to monitor this group and hope to learn more about the reasons for the allergen exposures. Sicherer says the study shows the serious need to bolster education and vigilance. Parents must ensure that anyone taking care of their child practices proper precautions and has the know-how to deal with a reaction.

From the Fall 2012 edition of Allergic Living magazine.

Erica Andert, mom of a 6-year old with food allergies, took the initiative to send a letter to the governor of Indiana. And she got action; the governor signed the proclamation. “If even one person sees and realizes the impact food allergies can have, then asking for awareness in Indiana was well worth it,” she says.

- Visit FAAN’s website for a sample proclamation to send to your governor.

- Have you sent a letter to your governor? Let us know on Facebook.

* In Canada, May is Food Allergy Awareness Month.

- Anaphylaxis Canada is seeking nominations for “Difference Makers”, people who have improved the lives of those with food allergies. Nominate someone at: www.anaphylaxis.ca.

- The EpiPen Take Action Event is a series of fun, family walk/runs organized in support of the Allergy/Asthma Information Association.

This year, the events take place:

Saturday, May 5 – Ottawa
Saturday, May 12 – Winnipeg
Saturday, May 12 – Brooklin, Ont. (north of Whitby)
Saturday, May 26 – Windsor, Ont.
Sunday, May 27 – Mississauga

For more information on participating or donating, click here.

A substantial portion of the money raised at the events goes to the Canadian Allergy, Asthma and Immunology Foundation (CAIFF) in support of allergy research and patient education.

Little Amarria was the wakeup call. We have the tool, the auto-injector, to stop the senseless allergy deaths like hers. Now we have to use it.

On the first day of school after Christmas of 2011, 7-year-old Amarria Johnson and her Grade 1 classmates in Richmond, Virginia bounced outside of Hopkins Road Elementary after lunch to play. You could usually hear Amarria before you saw her: she loved to sing, in church, for the video camera, in the car, at school. She would sing for anyone, and she had big plans to be a star on the Disney Channel.

For this first day back to school, Amarria’s mother had carefully rolled her daughter’s long hair in a bun. The girl was excited to be going back. “She loved everything,” her mother Laura Pendleton told Allergic Living. “The world was an awesome, innocent place.”

Then a child in the playground gave her a peanut. Amarria had always avoided the peanut butter and jam sandwiches that the school offered for lunch every day because she had an allergy to peanuts. But this time, for reasons no one knows, she popped the peanut into her mouth.

Amarria knew right away she was in trouble. She asked the teacher outside to help. That was exactly what she was supposed to do. But then the system failed her.

The teacher walked Amarria to the school’s health clinic, where an aide searched for an epinephrine auto-injector with Amarria’s name on it. An auto-injector shoots epinephrine, also known as adrenaline, into the body. The drug can stop a severe allergic reaction outright or buy enough time for paramedics to arrive. Amarria desperately needed that shot of life; in the minutes after she arrived at the clinic, she was struggling to breathe. But the clinic did not have an auto-injector prescribed for Amarria.

A Child Runs Out of Breath

Over the next few minutes, the girl ran out of breath, right there in the clinic. Just before 2:30 p.m., the school called 911, but by the time firefighters and police arrived, Amarria’s heart was failing. The rescuers tried CPR; they tried to restart her heart with a defibrillator. They rushed her to Chippenham Hospital, but it was too late. Amarria was pronounced dead shortly after she arrived. The cause of death: anaphylaxis and cardiac arrest.

It is such a senseless, heartbreaking loss of a little girl so full of life. But beyond the tragedy, this disturbing issue has emerged: there were likely auto-injectors prescribed to other students in the Hopkins Road Elementary clinic. (Allergic Living has learned this was likely the case, though the school board declines to comment on specifics.) If an auto-injector was there, however, the aide was not allowed to use it. Why?

“Many of our students [in Chesterfied County] have EpiPens at school,” acknowledged Shawn Smith, the board’s spokesman. “It’s illegal to give a prescription drug to someone else,” he said.

The staff at the county’s public schools are instructed that they are only allowed to use an epinephrine auto-injector if it is specifically prescribed by a doctor for the child in question and if the school has the child’s written action plan for allergy emergencies. “Absent those two,” Smith said, “we’re unable to carry out the doctor’s [verbal] orders.”

Next page: Why we can stop the tragedies – now