EpiCenter Medical, Inc was founded by allergist Dr. Mark Greenwald and lawyer Elizabeth Goldenberg

A comprehensive new training course for understanding and managing anaphylactic emergencies has just launched online.

“First Aid For Anaphylaxis: An Allergic Emergency” fills an important educational gap by providing clear instructions for what steps to take if witnessing an anaphylactic reaction. It provides easy-to-follow, standardized information in line with World Allergy Organization (WAO) guidelines.

“We have created this course to protect allergic individuals by ensuring that the first on the scene are trained to recognize an allergic emergency – anaphylaxis – and respond immediately with life-saving first aid,” said Dr. Mark Greenwald, the Toronto allergist who co-created the course with Elizabeth Goldenberg, a lawyer and allergy advocate.

“This medical emergency requires immediate first aid – the individual can’t wait for emergency crews to arrive,” said Greenwald, referring to the need for quick response with emergency epinephrine when an anaphylactic reaction is in progress.

Greenwald and Goldenberg founded EpiCenter Medical Inc., the company that offers this online course, which provides excellent guidance for parents of allergic children, their caregivers and school and daycare staff. But the course is also designed to be used more widely in the community: staff in restaurants, dental offices, airlines, government offices, hotels, and sports venues are among those Greenwald sees benefiting from its emergency training.

“When staff in those locations are called to respond to a reaction on their premises, they will know how to recognize anaphylaxis, to treat anaphylaxis immediately with epinephrine for the best survival rate, and what life-saving steps to take next,” he says.

Anyone with Internet access can take the course, which is divided into modules:

• It begins with definitions of allergy and anaphylaxis, and moves into an explanation of epinephrine and easy instructions on how to use an epinephrine auto-injector. (So far, the course gives details on the widely prescribed EpiPen, but this may be updated soon to include the new Auvi-Q/Allerject injector.)
• As the lessons progress, participants learn how to spot anaphylaxis, and are given clear steps to follow (and remove any lingering doubt) during an anaphylactic emergency.
• As legal questions can arise among would-be good Samaritans, legal consequences are also covered, from injecting the life-saving shot into someone else, to the ramifications of deciding not to do so.

To confirm the participant’s comprehension (and keep the user engaged), quizzes are taken throughout to test knowledge. Users cannot move on to the next section until they have passed the previous one.

Allergic Living was glad to see that EpiCenter Medical’s course stresses that it’s always better to give the shot, and immediately, in the case of a suspected anaphylactic reaction. Delay can reduce the chance of epinephrine being effective, and there are no harmful effects associated with giving the shot to a healthy person who doesn’t require it.

Those who complete the online course are able to print out a personal certificate stating that they are S.A.V.E. certified – which stands for Save Anaphylaxis Victims in an Emergency.

EpiCenter Medical also offers sale of an ‘Epi-Kit’, which is a case of multiple EpiPens designed to be placed in public locations, in a manner similar to automated external defibrillators. The idea is that an Epi-Kit should always be available within 60 seconds of an anaphylactic emergency.

In summary: This course provides highly valuable information and life-saving instructions. It is excellent as a standalone course, and could also be integrated into CPR courses, so that any first responder in an anaphylactic emergency will know what steps to take to save a life.

The course is available at epipentraining.com
Cost for an individual: $29.95
Discounted group rates available for groups larger than 10

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

Dr. Sharma:  The ability of epinephrine to treat the many signs of anaphylaxis is rather amazing.

It acts on a number of receptors in the body to exert its effects. First, it causes constriction, or tightening, of the blood vessels, which decreases swelling and also helps to increase blood pressure.

It also increases the heart’s contraction and heart rate, which can help to prevent or reverse cardiovascular collapse. Epinephrine relaxes the muscles around the airways in the lungs, helping the airways to open up.

Finally, it prevents the release of additional allergic chemicals, which aids in stopping further progression of the reaction. No other medicine acts on so many body systems, which is why epinephrine is the drug of choice for anaphylaxis.

Dr. Sharma is an allergist, clinical researcher and Assistant Professor of Pediatrics. He is Associate Chief of the Division of Allergy and Immunology at Children’s National Medical Center in Washington D.C. and Director of the Food Allergy Program. He co-authors “The Food Allergy Experts” column in the American Edition of Allergic Living magazine. Questions submitted below will be considered for answer in the magazine.

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.

“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

The other evening I’m at a school event with the kids. It’s movie night, so I’m towing a bag of treats, including some ketchup-flavored potato chips (my fave), gummies (theirs) and a few other pieces of choice junk. (What can I say? It’s movie night!)

Another mother I’ve known for years – a nutritionist, no less – notices my goodies and asks, “Can Lucas eat all that?”

“It’s not all for him,” I reply. “But yeah, it’s all safe for him, if that’s what you mean.”

“That’s exactly what I mean,” she says, now in an obviously peeved tone. “I sent some of those same snacks in my son’s lunch bag last week and they were sent home with a note saying ‘they’re unsafe for our allergic students’.”

Another mother overheard the conversation, and nutritionist mom was quick to repeat herself, only now in an even snarkier tone. “Next thing you know they’ll be telling us we can only send bread and butter, or actually, not even that,” she adds. “I hear you on that one,” the other mother responds (and I swear I could hear her eyes rolling).

“But that’s not at all the direction we’re going in,” I protest. I know this, because I advise the school on allergy-related issues – and I’m all about asking others for as little accommodation as necessary.

I’m well aware that my son Lucas (allergic to peanuts, tree nuts, egg, mustard and kiwi) has a much better chance of cracking his head on the pavement than he does reacting to a food he’s not eating that may contain a trace of nuts. I also believe that allergy parents must primarily educate their allergic kids and instill a no-sharing policy in them, above and beyond everyone else. I think it’s doubly important not to over-insulate our growing allergic kids and to use school as a training ground for life, within reason.

This is why our school’s allergy policy calls for support and awareness. “We don’t call for bans. We’re not hung up on ‘may contains’ and we’re definitely not only restricted to products that have a nut-free symbol on the packaging,” I explain to nutritionist mom, in the sweetest voice I can muster, despite the steam whistling out of my ears.

“Then why did they send my kid’s lunch home?” She’s clearly annoyed and was obviously humiliated by the wrist-slap.

Next page: Sam tries to figure out what went wrong …