Is Food Really Love? *

By Gina Mennett Lee, M.Ed.

Someone recently said to me, “Food is love.  Love is food.” And my response was, “I love food, but I love people more.”

I’m of Italian heritage.  If you are Italian, you know this means that food is central to all gatherings.  I have fond memories of visiting my Nana and having her give me a piece of day old bread dunked in her homemade sauce.  “Taste this.  Tell me what you think?”  Or of my father making me “test” the meatballs before adding them to the sauce by frying up a few.  “How are they?”  he would ask, (as if he didn’t already know that they were delicious.)  Anyone that knows me, knows that I love “good food”.

But is food love?  Is food really what bonds us? .

These are important questions in a society where food is literally everywhere.  Where obesity rates have climbed to all time high, and in a society where 1 in 13 children can have a fatal reaction…to food.

Ever since my daughter was diagnosed with food allergies, I have had to reexamine my own relationship with food as well as our culture’s relationship with food.

What is it about food that people literally feel such a guttural response to?  One answer, I guess, would be very simple. We need food to live.  The need for food, for sustenance begins as soon as that first cell divides.  And I suppose, initially we bond with those that supply us with food.  But research shows that infants that are given purely what they need to sustain life: food, water, a place to sleep, but don’t receive love, will die.

So, as I stated, I’ve been giving this a lot of thought.  What was it that made me feel “loved” when my Nana made me my favorite dish, her homemade gnocchi?  Was it the taste of the delicate pillows of pasta that were hand rolled off the tines of my Nana’s fork?  Was it the special recipe, the ingredients?  Or was it something else?

I think what made me feel loved was knowing that she worked for hours creating something just for me.  I know now that it really was not the food that made it special.  I know this because gnocchi really doesn’t taste the same since she died, even using her recipe.  It really was not the food.  It was her.  It was the sharing.

So, to you, my community, my daughter’s community, I ask you to really think about it.   When we break bread together, does it matter what kind of bread it is? Or are we breaking the bread because it a symbol that we are sharing something more important than food?  We are giving and receiving.  We are caring for one another.  Isn’t that what being a part of a community is all about?  We can’t care for one another, we can’t truly be a community, if we exclude people.

So the next time that food enters the equation, I beg you to think of the 6 million children and 9 million adults that need to be careful about every bite they take.  When planning an event ask, “What are we trying to accomplish by having this event?”   If we can achieve the same result without food, let’s get rid of it.  If we need the food, ask: “Are there better, healthier, safer options that could work for everyone?”   Because what matters most is not really the food that is on the table.   What matters most is the people that are gathered around that table.

*This blog was written a couple of years ago.  I am reposting due to requests.

New Study Confirms: Anaphylaxis is a REAL THREAT. Need to Recognize Signs. Carry & Use Epi.

By Gina Mennett Lee, M.Ed.

President & Founder, Food Allergy Education Network, Inc.

A study by Asthma & Allergy Foundation of America, (published 2 days ago in the Journal of Allergy and Clinical Immunology) finds that “severe life-threatening reactions—anaphylaxis—are common in the U.S.”   Let me repeat this…life-threatening reactions are COMMON in the United States.

Just how common?

“According to the peer-reviewed study, anaphylaxis very likely occurs in nearly 1-in-50 Americans (1.6%), and the rate is probably higher, close to 1-in-20 (5.1%).”

Why is this important? 

This is the first large-scale study of it’s kind to determine the actual prevalence of anaphylaxis.   This study gives solid data to support what we are experiencing as food allergy advocates and educators.

Some interesting Stats:

  • “The most common triggers reported were medications (34%), foods (31%), and insect stings (20%)”
  • “Only 11% of those that experienced anaphylaxis used epinephrine”
  • “Only 10% called 911″

The most disturbing finding was that most people were unprepared to respond. 

  • “Only 52% had ever received a prescription for epinephrine”
  • “At the time of the survey, 60% did not have epinephrine available to them”

Now some of this is not “news” to those of us in the food allergy world.  Last year around this time, I wrote a post about the shockingly high number of families at the FARE Walk that did not have their child’s epinephrine with the them.

But it is not only children that we need to look out for.  In my role as a food allergy educator, I have many conversations with adults with food allergies.  I always ask if they carry epinephrine and most times their answer is “no”.

What does all of this mean?

Once again the message is clear.

ANAPHYLAXIS IS REAL.  

ANAPHYLAXIS IS LIFE-THREATENING.

ALWAYS CARRY YOUR EPI.

USE YOUR EPI WHEN EXPERIENCING ANAPHYLAXIS. 

We need to get this message out to those that need it most if we want to prevent unnecessary deaths.

One last concern:  I am wondering why only 52% of those that have experienced anaphylaxis have ever received a prescription.   Does this indicate a larger issue…that epinephrine is not prescribed even when indicated???

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Resources:

Please download our FREE ” You Could Save Life…” Poster & Share with family, friends, schools and businesses.

FAEN Poster 8 x 11- web

Kids with Food Allergies Foundation (A division of AAFA) created this excellent 2-page guide for parents of children with food allergies.

steps-to-avoid-allergic-reactions

More more information on the study, click here.

United States Food Allergy Action Plans Not Aggressive Enough?

By Gina Mennett Lee, M.Ed.

President & Founder, Food Allergy Education Network

Statistics indicate that in the United States we woefully underuse epinephrine to treat allergic reactions.  In fact, in a journal of Pediatrics article from February 2012, it was found that epinephrine was administered in only 29.9% of severe reactions of preschool-aged children.

The debate about when to use epinephrine has been a constant one in the food allergy community, but it was further fueled by the tragic loss of Natalie Giorgi to anaphylaxis over the summer   Her story was especially difficult due to the fact that the parents seemed to have acted in accordance with her Food Allergy Action Plan.   After a known ingestion, they gave her antihistamine and observed her for signs of an allergic reaction.  Unfortunately, by the time there were visible signs, Natalie’s reaction could not be halted even with 3 doses of epinephrine.  This made me and others in the food allergy community start to really question our approach to allergic reactions in this country.

Jennifer Van Evra of Allergic Living conducted an excellent interview on the topic here.  What struck me most while reading this article was one particular quote from Dr. Susan Waserman, “We [Canadian allergists] propose that epinephrine be given, at the first sign of any reaction.”   This means that in Canada they recommend the use of epinephrine at any sign, even if it is “only hives” or “only localized”.  What a dramatically different approach!  Could we in the United States, be preventing  unnecessary deaths by adopting this approach?  It certainly would make the decision-making process easier for those who care for children with food allergies.   There is much apprehension on the part of parents, caregivers, teachers, and school nurses when it comes to the question of when to use epinephrine.

Let’s take a look at two different food allergy action plans.

This one is from FARE and used in the United States.  On this action plan, there are two sets of instructions, one for “mild symptoms” and another for “severe symptoms”.

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This one is from Anaphylaxis Canada and used in Canada.  Here there is only one set of instructions ( as seen in the third section).  “Act quickly.  The first signs of an allergic reaction can be mild, but symptoms can get worse very quickly.  1. Give epinephrine…2. Call 9-1-1…”

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Imagine being a parent, caregiver, teacher, or nurse reading these food allergy action plans.

Which one do you think it easier to understand and to follow?  Which one leaves less uncertainty about when to use epinephrine?  To me the answer is very clear.  Are there any drawbacks to this more aggressive approach?

I think it may be time for the medical community in the United States to take a hard look at this and rethink their approach.  Consistent and clear instructions about when to use epinephrine truly are needed in order to ensure that those with food allergies will receive the proper emergency treatment.

What do you think?

Hayden’s Food Allergy Video

 

 

 

 

 

Wrann Family

Last week I received a text from our medical advisor stating that a family he works with created a video that I should see.   I looked it up on YouTube and was surprised to find that the family was one of our FAEN families. I immediately contacted Emily to ask her about the inspiration behind this video.  Below is our interview.  I believe that it is an excellent tool for teaching younger children about food allergies and what they can do to keep their friends with food allergies safe.   This family was able to keep it simple enough for children to understand without weighing them down with the difficulties of label-reading, labeling laws, and other issues.
I want to say a special thank you to Emily and her family for making a video that will benefit the entire food allergy community.  They want this video to used and shared.  Please support this family’s vision by leaving a comment here and by sharing their video.
Best,
Gina
First, can you tell me a little bit about you and your family.

My husband and I have been married for 14 years.  We live in the Ivoryton section of Essex, CT.  We have 3 kids; Chloe age 9, Hayden age 7 and Daphne age 4.  Hayden is the only one of our children with food allergies.  We’re a very active family.  We love to hike and fish.  In the summer we take lots of day trips to zoos, museums, beaches and parks.  We love to vacation in Disney World.

Can you tell me what inspired your family to create this video?

The inspiration for this video was the custom photo book I have been reading to Hayden’s class every year since he started school.  The voice-over was scripted by my brother based off of the book.  The message we hope to share with other kids is that food allergic children are normal kids who have to take simple precautions to keep safe.

Who do you hope will view this video?

We would be honored to see this video shared in elementary schools.  We kept the video fairly generic so that it would apply to most, if not all students who manage food allergies.  We don’t mention how severe or how minor a reaction can be.  We only mention that it could make someone sick.  In my experience, Hayden’s allergies at school have been very well received by his peers but I do worry that there are children who will keep their distance because they are scared they’ll make him sick or because he has a condition that makes him a little different.  When I have shared the photo book in the past I felt that it took the mystery out of medications and none of the children questioned why they are washing their hands again (and again!)  I have heard from parents of Hayden’s classmates that their children have reprimanded them for packing a snack that wasn’t safe for the classroom.  I’ve heard that their children have wondered aloud at the dinner table if something was safe for Hayden to eat.  Its aways great to hear that the children really absorb and  feel compassion for this condition.Part of the message is that classmates should tell a grown up if Hayden feels sick.  I think children at this age LOVE to be given a special job and they take is seriously.  During my presentation to the class I also pass around trainer Epipens (this year we’ll share the new Auvi-Q as well) so the children feel important, involved and are not afraid of the medication.  At the end of the school year I follow up with PAL awards and PAL pencils for each classmate to thank them for their vigilance and Protecting A Life (part of FAREs program online).

What has been the response?

We’ve had over 550 views on our video in 3 days.  I’ve received praise from doctors and numerous teachers.  It’s a wonderful feeling to think that this will not only help my son and his peers but that it could help others as well.  The videographer that volunteered his time to film this video said he was happy to take part in a project with a positive message.

 Would you recommend other families create their own video?

From a mothers perspective its a great keepsake of my family at this point in our life.  I am lucky enough to have a brother who is involved in the film industry as a hobby who was excited to take this project on.  After he had written the script we spent five hours filming and I’m sure he spent MANY hours editing.  Filming with kids produces MANY bloopers. I feel confident that we were sending a positive message and I think if others can do that it would be great!

What advice would you give them?

Think broadly if you want to help others.  Hayden avoids about 20 foods but we don’t mention those in the video.  Not only would it limit our audience but its irrelevant to my sons’ classmates.  (And there’s always my hope that he’ll outgrow one of his allergens before he outgrows the video!)

 Is there anything else you would like to share?

I’d love to see more positive messages about food allergies.  One of my pet peeves is when I hear people say their children ‘suffer’ from food allergies.  My son does not suffer.  My son ‘manages’ food allergies.  Does he have times of disappointment?  Sure.  But EVERY child has times of disappointment.  Is he physically uncomfortable because of his allergies?  Sometimes.  But we all have times like that.  That’s just life and this is the challenge we’ve been given.  And it’s okay.  Sometimes it’s hard but most of the time it’s okay.

Well said, Emily!!  I absolutely agree with you regarding the need for more positive messages about food allergies and you have certainly accomplished that with this video.  Thank you for taking the time to answer my questions and for creating this excellent resource.
By Gina Mennett Lee, M.Ed.
Founder, Food Allergy Education Network

The Conversation You MUST Have Before School Starts

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There have been some great back-to-school tips and blogs published recently, but none has addressed a major concern that I have as an educator and as a parent of a food allergic child….. the issue of training.   For years, many of us in the food allergy world have been advocating for proper training of school personnel in the use of the epinephrine auto-injector and the signs and symptoms of an allergic reaction.  Just as we have begun to make headway, there is now a slew of new options on the market.  Most of the time, more options are positive.  In this case, I am concerned that it may be too much of a good thing.  (One benefit of the competition is coupons, see below for offers from both Auvi-Q and Epi-pen.)

As of this school year, there will be 4 different epinephrine auto-injectors available, each with a different way of injecting.  Some look similar to each other, but work differently. One is radically different (the Auvi-Q).

This is a major concern for me.  Due to multiple factors (patient preference, cost, insurance regulations, prescribing physicians, etc..), there is a slim chance that only one type of auto-injector will be used by all students.   Proper training is going to take a concerted effort by both the schools and parents of children with food allergies.   (Even with the Auvi-Q, caretakers should not rely on the voice prompts.   In an emergency situation, you must KNOW how to use the device.  The voice-guided instructions should be for back-up only, in my opinion.)

What parents should be asking school personnel: 

  • Are you aware that there are new epinephrine auto-injectors on the market?
  • How many types of epinephrine injectors are used in this school?
  • Have you been trained to use each one?
  • How are you going to address this?
  • Do you do training for all of the staff on the epinephrine injector my child is prescribed?

Tip: Make sure to add  information about training to your child’s 504 plan, if needed.

What School Personnel Need to Know:

  1. The new forms of epinephrine auto-injectors
  2. How to use each one and what the similarities and differences are between each
  3. Which ones are currently being prescribed to their students with food allergies

In addition, training devices should be ordered for each type of auto-injector.  If this hasn’t been done yet, you could ask the parent if they have an extra trainer.

More time should be allotted for food allergy training this year in order to allow for instruction of all staff on the auto-injectors used in your particular school.   Additional follow-up training should be done for all teachers and support staff directly responsible for each child (specific to the epi that child uses/carries).

****Additional instruction may be required later in the school year, if a new type of auto-injector is prescribed.****

RESOURCES YOU CAN SHARE:

Downloadable chart of auto-injectors on the market from Kids With Food Allergies Foundation

How to Use Your Auto-injector:

For information on how to use your auto-injector, see our page here.

Coupons:

Auvi-Q

Epi-Pen

By Gina Mennett Lee, M. Ed.

Related Post HERE (Watch Out Epi-pen!  Here comes Auvi-Q?)

Thank you for a Fabulous Food Allergy Awareness Week!!

We had such a wonderful week that I thought I’d share some highlights.

FAAW mailing 2

One of the most important things we did for FAAW was to send FREE resources to every school district in the state of CT a week before FAAW.  I am so proud of this accomplishment!  We have already received thank you’s from school districts.  We know that providing information and resources saves lives!  In the above picture, Kari Panuccio (Family Events Coordinator), Erin Spaulding(Vice President and Parent & Youth Group Coordinator) and I are stuffing envelopes with resources including: morning announcements for FAAW, our “You could save a life…” posters, “The Food Allergy Handbook”, and our school resources list.

Proclamation FAAW 2013

For the second year in row, we were honored to receive the proclamation from Governor Dannel P. Malloy stating that May 12th-18th is Food Allergy Awareness Week in the state of Connecticut.

FAAW2013 Robin reading

We spent some time with our friends at See Us Grow and our Secretary,Robin Comey, read The Princess and the Peanut to a mesmerized group of toddlers and preschoolers.  As part of our partnership with the Branford Early Childhood Collaborative, we are donating books to 18 preschools in Branford, CT.

We closed our week in the most wonderful way with our 1st Annual Dance-a-thon at the gorgeous Owenego Beach and Tennis Club.  Our sponsors for the event were: RJ Julia, Go Picnic, The Owenego, and Camp Emerson.  A special thank you to Disc Jockey Mike Bollea for donating his services and helping to make this event such a success.

Sue Lein

We were very happy to have our sponsor, Sue Lein from Camp Emerson attend our event and share her philosophy of providing an overnight camping experience for all children that is safe and inclusive.

Awards

One of the best parts of my job is presenting our FAEN Hero Awards each year.  The recipeints’ stories inspire us to continue our work and everyone will tell you that I never get through an awards ceremony without shedding a few tears.

child advocate awards

We honored our FAEN Hero Award recipients among them our Child Advocate Award recipients, Caroline and Conor Spaulding (pictured here with their sister, Katie, mom, Erin and Dad, Mike).  Other FAEN Hero Award recipients included: Michael Pascucilla (East Shore District Health Department), Barbara Naclerio (East Shore District Health Department), Kate Lewantowicz  (HOME Restaurant), Melissa Thibeault (Boy Scout Leader), Paul and Toni Mennett (My parents and our largest donors), and Maddie Steinmen (Sister Award).

Kyle singing close-up

Our new friend, Kyle Dine and my old friend DJ Mike Bollea kept the party rocking as we celebrated our children and also proved that you don’t need FOOD to have LOTS of FUN!!

kids dancing with Kyle

Kyle had all the children singing “Food Allergies Rock!” and proudly declaring what they are allergic to.  It was an empowering event for our children and the absolute best way to end the week.  Thank you, Kyle, for the important messages you spread through your music.  (For anyone who hasn’t had the honor to meet Kyle yet, let me tell you, he is a seriously AWESOME guy!  His performance exceeded all expectations and we will be sure to have him back again next year!)

The most important part of hosting our Dance-a-thon was not the donations we received (which we are very thankful for)  but it was the opportunity to create an event that was safe and fun for everyone.  At one point in the night, I stood and watched the children jump and shout and sing and dance.  It was a true moment of joy for me.

A special thank you to everyone that helped make this week so special, particularly our FAAW chair Kirsten Hess and her family.  Thank you very much!!  We look forward to continuing our important work.

FREE Resources for Food Allergy Awareness Week

In preparation for Food Allergy Awareness Week, we wanted to share some FREE resources with you. All of these resources are available on this blog page and by clicking on the FAAW Resources TAB on our website.

Morning Announcements for FAAW. Share these with your school principals.  There are facts to share each day.

FAAW Morning Announcements Elementary School

FAAW morning announcements-middle and high school

Tips for Coaches and Other Leaders

Our Restaurant Training Program…(coming soon).

Downloadable “You could save a life…” Poster with symptoms of an allergic reaction.  These posters are great to hang in lunchrooms and classrooms.

FRIEND AWARD:  Take time to say “thank you” to those special people that help to keep your child safe and included by downloading our  FAEN_FriendAward.

Best,

Gina Mennett Lee, M. Ed.

President, Food Allergy Education Network

Should Bus Drivers Be Trained to Administer Epinephrine?

Yesterday, I was interviewed live on FoxNews CT regarding this topic.  For years,  I, and several other parents including Erin Spaulding and Robin Comey, have been advocating for better, more consistent policies regarding food allergies in our school district.  Last year, Erin, the VP of FAEN,  pulled the issue of bus driver training to the forefront after a dangerous situation had occurred on the bus her children were riding on.   This received media attention and led to this public debate.

So, here is the question: Should bus drivers be trained to administer epinephrine?  If not, who should be responsible for the safety of children with food allergies and other medical conditions while they ride the bus?

According to Timothy Stokes, a spokesperson for First Student, Inc., the policy for First Student is the following: “In the event of an emergency, bus drivers are trained to pull the bus over in a secure location and radio dispatch for assistance.”

This policy should be worrisome to every parent.  What if a child were to choke on the bus?  Would the bus driver simply stand by and watch while waiting for EMS to arrive?  Erin states in her interview that her “daughter’s throats closes within 5 minutes of ingestion.”   Which means that by the time EMS arrives, it may be too late.   In the case of my daughter, her past reactions have occurred so quickly that she would have even less time.    We find this current policy to be unacceptable.

I received this tweet last night: “Just as everyone should know First Aid and CPR everyone should know how to use Epipen especially anyone involved in childcare, ”  and I agree.  As any teacher, parent, or bus driver can attest, accidents can happen at any time.  I think that we, as adults, owe it to our children to be prepared at all times to respond.  Frankly, if I were a teacher, a bus driver, or a paraprofessional, I would want to have that training provided for me.  No one wants to witness the death of a child and know they could have done something to prevent it…no one. In the case of anaphylaxis, most deaths are preventable if epinephrine is administered immediately.

Please, let you voice be heard.  Leave a comment here and on the pages below.

View Erin’s story HERE:

View my live interview HERE.

Leave comments here and on this blog page.

Thank you,

Gina

Gina Mennett Lee, M.Ed.

President, Food Allergy Education Network