I had the honor and pleasure of attending a food allergy blogger conference at The Strand Hotel, in New York City this week. There is something truly magical getting to meet people you know virtually, through Twitter, Facebook, their articles, posts, books and blogs. We all came to this meeting with no idea who the other attendees would be, so we were excited and to be honest, quite star struck to be meeting some real Food Allergy Rock Stars! The guest list included: Cybele Pascal, Kelly Rudnicki, Heidi Bayer aka: Brooklyn Allergy Mom; Irene Chu & Sarah Chuck of Get Allergy Wise; Caroline Moassessi aka: Grateful Foodie; Elizabeth DiBurro aka: Easy Breezy Life; Joanne LaSpina aka: Food Allergy Assistant; Kim Pellicore The Food Allergy Mom; LibbyIlson The Allergic Kid; Lindsey Steffensen of Frugal Food Allergies; Lisa Rutter of No Nuts Mom Group; Missy Berggren aka: The Marketing Mama; Ruth LovettSmith of Best Allergy Sites, and Tracy Bush Nutrimom-Food Allergy Liaison. This was put together by Lauren Kashtan of Mylan drug company, makers of Epipen; Sloane Miller, author of Allergic Girl, and Dr Ruchi Gupta, author of The Food Allergy Experience.
I will be breaking my posts up into parts because there is a lot of information to share. Part 1 is about Sloane Miller’s presentation to us, my notes and interpretation of these. Part 2 will be about Dr. Ruchi Gupta’s presentation, my notes and interpretation of them. [Statistics and graphics courtesy Mylan Specialty].
Dr Ruchi Gupta spoke to us about food allergies and anaphylaxis. We started the discussion about Epipens in schools. Did you know that Mylan has provided over 20,000 schools with free Epipens with their EpiPen4Schools program? Dr Gupta said she knew of 15 that had been used since September in her Chicago area! Several of those used were for children having first time reactions! We also discussed the situation which many states are finding themselves in with the new access to Epinephrine laws is how do you get the Epis into the schools. Simple? Not really. You need a doctor who can and will write prescriptions to schools for the epipens. Some states are hiring a district doctor, some the Chief Medical Doctor or Departments of Public Health Some are finding a allergy friendly doctor who will write prescriptions for any school that needs them. How do they write the prescription? Many are writing the name of the school on the prescription. There is also the question of pharmacies who are not willing or aware that they can fill a prescription written out to ‘ABC Elementary School’. Should prescriptions be for each individual school or for the entire districts? Some doctors are concerned about liability. What was becoming clear was the need for there to be some clarification to go along with the new Access to Epinephrine laws being passed. Some schools worry about taking advantage of the free Epipens, because they worry about having to bear the cost of purchasing them out of school budgets should they not be available free or at discounted rates. Then the question of “If the school’s set gets used- how do you get a refill, and who pays for it and at what price?” [A discounted price of $112.50 per set after the 4 free sets]. There also is concern about those people who will stop sending their Epipens into school, or self carrying with the assumption that ‘the school has one so I don’t need mine.’ To clarify this, Epipens in school are being provided to be used in the event of a child with an unknown allergy having a reaction- NOT to be used in place of individuals self-carrying prescribed medications! Think of the school’s as having a motto “We’re prepared!-Are you?”
Food allergies impact every aspect of life. Every relationship. They are complex, and complicated! They are misunderstood by the general public. Some common misconceptions include: “There is a CURE!” “You can get shots” [or a medication to treat/fix it]; “They are not life- threatening” “You won’t die from it” Anaphylaxis is defined as a life threatening allergic reaction that is rapid in onset and may cause death, either by restricting airways, or through a significant drop on blood pressure. Anaphylaxis is not just from foods- it can be exercise induced, idiopathic [no known trigger], allergies to latex, insects [bees etc], medications. Anaphylaxis “may affect between 3-43 million Americans.” A Journal of Allergy and Clinical Immunology estimated 2.5% of Americans have clinical food allergies, and July 2011 Pediatrics study found 8% of children suffer from food allergies! The current stats estimate 1 in 12 [or]13 children have food allergies. Anaphylaxis results in up to 1500 deaths per year, and approximately 90,000 emergency room visits! [facts and stats courtesy Mylan]
We really do NOT have accurate data on the number of people with food allergies, or the true number of anaphylactic hospitalizations or deaths, partly due to how hospitals code different cases, partly because no one is tracking this yet! We know the numbers are increasing annually! There is another percentage of the population who has not been formally diagnosed as well. They are aware they are allergic to peanuts/shellfish/[etc] and self avoid, but do not have medication and have not seen an allergist. We can hope that someone whether it’s the CDC, WHO, or FARE, someone will start number tracking and crunching for us. Accurate data and stats make it easier to show evidence in order to gain funding for research!
Common signs and symptoms of anaphylaxis involve the central nervous system, skin[hives, rash], airways, heart rates, and gastrointestinal system. Anaphylaxis can occur when a reaction involves skin plus ANY internal involvement! However- of children who have had anaphylaxis, 30% had NO skin symptoms! This surprised me, as I often see rashes and hives first in my boys reactions! It is scary to think that it could happen with no visible signs. As we discussed the symptoms, the WHEN would you use an Epipen, We all sat back thinking about those reactions our children had had- those times when we realize after the fact, that they were having an anaphylactic reaction [skin plus 1 internal involvement-like wheezing or vomiting] and we did not use an Epi. Jacob had a reaction to something unknown about 2 weeks ago while sitting in a grocery shopping cart. My God- He was having anaphylactic reaction! He was red hives, watery eyes [skin] and sneezing, coughing, snot/phlemy [airway]. I washed his hands and face and gave him Benedryl, and watched… I was lucky that the Benedryl did the trick that time, especially since I have no idea what set off that reaction!
We also discussed the medical professionals. The good ones, and the bad ones. Did you know that for interns studying to become doctors, they are NOT required to take allergy as part of their training. It is an elective. This is one aspect that MUST change! [and where getting accurate numbers and statistics will play an important role!] Any medical professional who works in the Emergency Department, Family Practice or Pediatrics should be REQUIRED to study allergies! Should be, but often times have little or no training on it. It is quite likely that YOU have more understanding and knowledge than your doctor on the subject! Remember, if you are not getting the answers you need from your current doctor, you have every right to find another doctor who may be a better fit. Part of having a good doctor is having one who understands and does necessary testing to determine if and what is causing allergic reactions. As anyone who has had any allergy testing can tell you, it is NOT an exact science. The only true ‘Gold Standard’ for allergy testing is a double-blind food challenge with a placebo and suspected allergen in the doctor’s office. [But honestly- how many of us have had testing done this way? It is time consuming, and scary!] Skin testing and blood testing can give false results. There is a new blood component testing that is beginning to be done where allergens are tested in a single drop of blood. This testing is showing value for identifying peanut, egg and dairy allergens, but this is still relatively new, and many doctors don’t or won’t do it, and the test is usually not covered by insurance [with about a $300 price tag]. A history of reactions, along with positive skin and RAST results are often our measure of determining what is triggering allergic responses. Allergies are tricky, a person may grow into and out of different allergies, some hit like a tsunami-unexpected, with no warnings. [Again, we can hope that better data could mean better funding for research to perfect accurate testing!]
We spoke about the need for parents to continue the discussions with their children as they grow and mature. There is a need in our allergy and anaphylaxis education to have talks about intimacy. Mylan Specialty recently did a survey, here is a direct quote from the press release: “Valentine’s Day brings the exchange of cards and candy, and marks a popular time for social events and dates involving food. But for parents whose children have life-threatening food allergies, it is also a time for continuing their important dialogue about avoiding allergic triggers and preparedness should anaphylaxis (a life-threatening allergic reaction) occur. This importance is highlighted by a recent survey* revealing that as many as one in three parents report that their children with life-threatening allergies have experienced anaphylaxis on Valentine’s Day.”
What can you do to help be prepared? Well for starters, ALWAYS carry your medications. ALWAYS! Children and adults need to be able to communicate if they are feeling a reaction. We as care-givers may often see signs before they are aware themselves. [Your date, who has a peanut allergy, may start having a rash or hives appear, or may start clearing their throat and sipping their water. ] Teens need to have an inner circle who are aware of their allergies, and who have been trained about how to use their medications. Teens need to carry their Epinephrine with them at all times! “The survey, which was conducted by Harris Interactive and commissioned by Mylan Specialty, revealed that teens that date were significantly more likely to have experienced anaphylaxis during Valentine’s Day than those who do not date (47% versus 13%) and:
- Less than half of parents (47%) talk to their child about risks posed to children with life-threatening allergies from physical contact related to Valentine’s Day, such as being kissed by someone who has recently eaten food they may be allergic to
- Only 47% of parents tell their teen that when going on dates, they should tell their date about their life-threatening food allergy
- 35% of parents did not indicate that they remind their teen to bring his/her epinephrine auto-injector on dates” [EpiPen® (epinephrine) Auto-InjectorEpipen Indications and important safety information at epipen.com. ]
These discussions are not ones I had really yet considered, as my boys are only 3 and 6. It was brought up that even for kids this young, it would be great to start having Epi-training play-dates with their circle of friends. Teaching them about the allergic reactions and let them practice using the training Epi-pens. I loved this idea, especially since these are children that will likely be in school together though-out school years. That means even if they aren’t buddies by junior year in high school, if [Johnny] sees Caleb at a party and Caleb starts having a reaction- he will remember- and know what to do and how to look out for him!
A few side notes that Dr. Gupta mentioned I found of interest were that the new recommendations for severe asthma attacks calls for using 4 puffs of an inhaler instead of 2. She told us that she has used and seen quick results from administering Clariton for treating allergic reactions, and that it could be given along with Benedryl, or instead of -[non-drowsy?!]. Of course check with your doctors first- but now you know and can includethis on your list of questions to bring to your next appointment! [Thanks Sloane Miller!]
As you can tell there was a LOT of information and discussion happening during this presentation! I feel that I jumped around with a few topics here, as I mentioned this is my humble interpretation of the meeting and my notes. We have all agreed that we wanted a longer meeting so we could dive deeper into so many of these topics! I will hit on some of the big topics and conversations among the attendees a bit more in my next post.