Category Archives: Food Allergy & Anaphylaxis

Food Allergy Awareness Week 2016 Follow Up

It’s amazing how much more food allergy awareness there is in 2016 than there was in 1996 when my son had his first reaction – a contact one at that – to peanuts! Twenty years makes so much difference, yet there is still a long way to go.

Christmas 1996

Rare is there a preschool that doesn’t have some awareness of food allergies; however, there are so many colleges that need to be educated. Day cares have protocols for children with food allergies, yet employers don’t have any idea what’s coming as our children age and need special accommodations in the workplace!

And don’t get me started on discussing airlines and their needs to serve peanuts, or warm nuts in First Class! We still have a long way to go to create more awareness of our children’s needs and civil rights.

There have been several key items that have occurred in the last 20 years. The main item was the Food Allergen Labeling and Consumer Protection Act which was passed in 2004 and became law on January 1, 2006. The top 8 food allergens must be labeled in words a child can understand as a result of this law. It is so much easier than it used to be to know if a product is safe.

There has also been the American with Disabilities Act Amendments of 2008 which defined eating as a major life activity, and therefore paved the way for life threatening food allergies to be considered a disability.

There is now an abundance of ongoing research occurring to find a cure for food allergies. When my son was little, there was nothing, and very little funding for research. The only “cure” was complete avoidance of the offending food.

I’m convinced that in the next 20 years, there will no doubt be a cure. In the meantime, living with food allergies is not as lonely as it used to be – sadly, there are so many more children being diagnosed each day. And the Internet has definitely made the food allergy world bond and be able to reach out to more families.

AllergicChild has been online since January 2000. We’ve been sharing our family’s experience of traveling, sending our son to school, and basically every aspect of our lives as it relates to food allergies. My son, Morgan, has detailed his life since he was 9 years old for the AllergicChild audience.

Morgan & Friends April 2016

In honor of this year’s Food Allergy Awareness Week, my son Morgan created a new website and blog, Morgan’s New Corner.  I’ve been hoping that he would create something like this for years! What better way to create food allergy awareness than to have personal experience shared by someone “living the dream”! (For those of you who have heard Curtis Zimmerman at FAAN and FAACT Teen conferences, you will understand this reference!)

What he has put together is even more wonderful than what I could have imagined. It’s one thing to be a parent of a child with food allergies; it’s an entirely different experience to be the child, the preteen/teenager, and now the college student managing this vigilant lifestyle.

Morgan has shared his personal experience about preparing for trips alone and with school groups, about college and what it took to find the right school. He also shares all his writing from the age of 9 through the present, and how food allergies have affected his life. I encourage you to visit his website. You will see that your child has an amazing future ahead!

Thank you for all your support and encouragement through the years. One day, when we have a cure, we won’t need Food Allergy Awareness Week. In the meantime, let’s continue to trudge this road and support one another!


Food Allergy Patient Checklist for Allergists & Pediatricians

I have recently begun speaking with local Colorado Springs, Colorado Allergists and their staff regarding the large number of teens and young adults who have died from anaphylaxis.

No death

I wrote an article for Allergic Living, Teens Speak Up About Averting Food Allergy Tragedies, which showed me that too many teens aren’t taking the precautions necessary to keep themselves safe; however, the teens did state that they listen to their parents and their doctors about food allergy information.

In Dr. Ruchi Gupta’s newest survey of parents, which she titled, Parents in dark about using epinephrine for kids’ food allergies, she found that “Less than 70 percent of parents recalled their allergists explaining when to use epinephrine and less than 40 percent said the same of their pediatricians.” Therefore, I question whether teens and young adults are getting good information from their parents.

Therefore, I felt it was time to bring this information to the attention of allergists in my area.

Here is the checklist I’ve suggested for allergists to discuss with parents, kids, teens and young adults who have food allergies, EVERY TIME they see the patient. Similar to an asthma checklist, which my son completes each time he sees our allergist, this checklist would be given to the patient to complete and review the gaps in behavior that could potentially create a life threatening situation.

FA checklist for doctors to use with teens

A PDF version of this checklist is available here.

From what I’ve found, allergists in my area are not currently reviewing these items with their food allergy patients. In an educated patient, the checklist could be reviewed quickly and rewarded with a high-five or fist bump! In patients who need more awareness, the allergist can remind the parent and child/teen or young adult which behaviors are risky and where to make changes.

If a food allergy patient isn’t seen but once a year to get an EpiPen prescription refilled, then it is especially important for the physician to review these questions to ensure safety. I’m convinced this would begin to educate the patients and parents who so desperately need to hear from their doctors how to practice vigilance.

Please FEEL FREE to share this with your allergist and/or pediatrician and help to save a life!

Follow the Money: Where is your donation to a Food Allergy Non-Profit going?

I have been a member and/or officer of several food allergy related non-profit groups for almost 20 years. I have the hope that when I send an organization my hard-earned money, they will be good stewards of my donation.

donate cash

My review of four food allergy organizations showed me that salaries and operational expenses take up a large part of the revenue stream of many food allergy non-profit groups. As a percentage of income, only one organization is giving away large amounts of money toward research – in fact it’s 64% of their revenue! Read on for what may change the way you contribute to food allergy organizations.

First a disclaimer – I am not a Certified Public Accountant. I majored in Finance, and have a Bachelor of Business Administration from The George Washington University. I continue to work in the field of finance providing financial management to several businesses, in addition to my work with

The 990 is just one avenue to glean information about a non-profit. Utilizing and Charity Navigator can provide additional information in your search for the best organization to donate money, in addition to annual reports of the organization and information from their website.

I reviewed the 2013 and 2014 Form 990’s  – the form required for a Non-Profit organization to file with the IRS – for FARE (Food Allergy Research & Education), APFED (American Partnership for Eosinophilic Disorders), KWFA (Kids with Food Allergies Foundation) and AAFA (Asthma and Allergy Foundation of America Inc). FAACT (Food Allergy & Anaphylaxis Connection Team) wasn’t yet in existence in 2013, and therefore didn’t have to file paperwork, however they did file in 2014. KWFA was merged into AAFA on July 22, 2013, however both organizations did file 990’s in that year; and the combination of the two organizations didn’t significantly change the percentages that I will report on.

FARE – Food Allergy Research & Education

FARE’s mission, as stated on their website, is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments.

FARE is the largest food allergy non-profit organization with $15.5 million in total revenue in 2013. They spent 35% of this, or $5.5 million on salaries and employee benefits. Then CEO, John Lehr, received a total of $341,968 in salary and other benefits. There were 8 other key employees listed with salaries above $100,000; and a total of 72 people employed in calendar year 2013. They gave $2.1 million (or 13% of income) in grants. The largest single grant was for $825,423 to Mt Sinai School of Medicine for “Food Allergy Programs”. The only grant listed for “Research” was $122,070 to Stanford University School of Medicine. FARE was the only organization with investments or other securities listed on their 990. They listed 2,982,570 shares in “ARC” which is Allergen Research Corporation, which develops desensitization treatments for food allergies. These shares have a book value of $2.4 million. Charity Navigator gives FARE four stars overall, but only 3 stars for “financial”.

FARE’s 2014 Form 990 was just released showing a decrease of annual income to a little under $13 million. They spent 47% of their income, or a little over $6 million, on salaries and other benefits of their employees. James Baker Jr. was the CEO from 8/1/14, and made $208,151 for 5 months until the end of 2014. There were an additional 9 employees receiving salaries above $100,000 for 2014, and a total of 81 employees during the year. There is no mention of the shares of ARC on the 2014 990 except that “Investments-other securities” now show a value of $150,505.

In 2014, FARE gave only $1.4 million away in grants: a paltry 10% of their gross income. “Research” was indicated in over $1 million of the grants. Charity Navigator has not updated their rating for the year end 2014.

AAFA – Asthma and Allergy Foundation of America

AAFA’s mission, as stated on their website, is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research.

AAFA was the next largest organization with $3.7 million in revenue in 2013. They spent $1.6 million (43%) in salaries in 2013. William McLin, President and CEO, made $274,251 in salary and other benefits. They had 2 other key employees with a salary over $100,000, and a total of 17 employees. They gave $161,500 (4%) in grants. The largest grant was $60,000. This same amount went toward “Biomedical research” to both Massachusetts General Hospital and to the University of Iowa.  I will include KWFA here because of the merger with AAFA. KWFA had $229,566 in revenue with $102,372 (44%) going toward salaries.  In 2013, there were no employees listed. Charity Navigator gives AAFA 4 stars overall.

In 2014, AAFA made $3.5 million and spent $1.9 million (54%) on salaries. Cary Sennett is the new CEO as of June 2014, and made $149,303 for that partial year. There are now 3 other key employees with a salary over $100,000, and a total of 26 employees. They gave $100,000 (2%) in the form of 3 separate grants – all for “Biomedical research.”

APFED – American Partnership for Eosinophilic Disorders

APFED’s mission, as stated on their website: To passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.

APFED was by far the best steward of its funds in 2013. With $638,083 of total revenue; they spent only $56,549 (or 8%) on salaries. Additionally, they gave away $311,990 (48%!) in cash grants. Their largest single grant was for $100,000 to Children’s Hospital of Philadelphia for research. They listed 5 employees for 2013. APFED is not rated by Charity Navigator.

In 2014, APFED made $451,942 in total revenue; spent $93,393 (20%) on salaries, had a total of 4 employees, and gave away $290,000 (64%!!) on grants; the largest of which was for $70,000 to ARTrust. Once again, APFED was the best steward of funds in 2014.

FAACT – Food Allergy & Anaphylaxis Connection Team

FAACT’s mission, as stated on their website, is to educate, advocate, and raise awareness for all individuals and families affected by food allergies and life-threatening anaphylaxis.

FAACT filed a 990  in 2014 and their total revenue was almost $136,000. They paid $10,637 in salaries, or 7%. There were no grants listed.

Summary: For the almost 17 million dollars given to these organizations in 2014, there is a little less than $1.8 million given in grants – and some of this is going toward educational grants and not toward research. The question becomes – do you believe in the mission of the organization? The vast amount of money is clearly NOT going toward research for a cure? Are you being helped by the conferences the organization provides; the educational webinars; and the lobbying efforts? Then send in a donation! However, if you thought your monetary donation was primarily going toward finding a cure for food allergies, I’d suggest finding somewhere else to donate!



No more deaths!

This past week has been rough for those of us in the food allergy world. There have been two deaths from anaphylaxis: Andrea Mariano of Canada and Simon Katz of Colorado.

These deaths have hit me hard. Maybe because they both were teens who ‘always carried’ their epinephrine, but didn’t do so on this one occasion – a decision that would change the course of their life. Maybe it’s because Simon Katz lived just one hour from me. Maybe it’s because these deaths were so avoidable.

Regardless, I’ve come to the conclusion that we need to take a stand and say, “NO MORE DEATHS!”

No death

I don’t want any more parents to become advocates in the food allergy world after they’ve endured an unimaginable tragedy. There needs to be a complete change in how the message is given to teenagers to “always carry your epinephrine!

How to go about this?

I’d like to ask Mylan and Sanofi (the makers of EpiPen and Auvi-Q) to fund and lead a campaign, along with national food allergy organizations like FARE, FAACT and Kids With Food Allergies, to get this message out to the following stakeholders:

1) ER doctors – I can’t even count the number of times I’ve heard food allergy families recount the miscommunication they’ve been given from an ER doctor about food allergies and epinephrine auto-injectors. These doctors must be educated to counsel families properly about EpiPens and Auvi-Qs. The devices should never be left in a car glove compartment – it’s criminal for doctors to be giving out this advice!

2) Family Practice doctors and Pediatricians – It’s my belief, based upon my experience, that if a child has a peanut allergy they should be referred to an allergist. An allergist is better able to manage these allergies that research has shown are more likely to cause anaphylaxis. I’ve heard too many families tell me that their child’s peanut allergy isn’t serious enough to warrant an epinephrine auto injector, according to their pediatrician. This makes me cringe and shows that more education is needed for these doctors if they are not going to make a referral.

3) Allergists – My experience has been positive with allergist’s knowledge of epinephrine auto injectors and the need to always carry them. I do see an opportunity for allergists to have more training on how to work with teens to create an agreement on compliance however. Having a doctor empower the teen provides more weight than a parent reminding, “do you have your epinephrine?”

4) Parents/Families – There are many lessons that families need to pass on to their children, who grow into teenagers, with food allergies – always read labels, don’t eat foods that don’t have a label, and always carry your epinephrine. The likelihood is that mistakes will be made. But the one message that parents need to understand from the first day of diagnosis is to never leave home without epinephrine. Yet many parents have not understood this message enough to follow through every day, every time they leave the house. Children watch what we parents do, not what we say. American Express used the tagline “never leave home without it” for years. We need to encourage all families to follow this sage advice! We also need to encourage families to let the school know if your child has food allergies and is to carry epinephrine. Complete the school paperwork, and tell those who need to know to keep your child safe!

5) Teenagers – Today’s teens are immersed in social media. Let’s meet them on Facebook, Twitter, Instagram, Tumblr, etc. with messages about food allergy awareness and carrying their EpiPen/Auvi-Q. Using the technology of their smartphones, we can reach teenagers where they live, to show them it’s cool to have epinephrine with them. If something were “Apple cool”, I’ll bet teenagers would be clamoring to have it! It’s also ‘sick’ to train your friends on allergic reaction symptoms, and ‘dope’ to  train them on EpiPen/Auvi-Q administration.

6) Schools – More and more states are passing legislation to allow for stock epinephrine in schools. Yet if the school isn’t aware of the students who have food allergies, or don’t have it available at school events, it’s not going to be helpful. Schools need to run “Anaphylaxis Drills” to determine if they are prepared for a teen suffering a severe allergic reaction. Many schools don’t know the steps to take for such a drill.

Lastly, I’d like to ask for Sanofi and Mylan to create an epinephrine device that is smaller and more likely to be carried by teenagers. The cost of EpiPens and Auvi-Qs have increased drastically over the last few years. Please take some of those profits to fund new technology in compact, easy to carry auto injectors.

Our teenagers are SO worth it!

Remembering to Bring Your EpiPen/Auvi-Q ALWAYS!!


If your child has food allergies, it is vital that they begin, at a young age, to remember to bring their epinephrine autoinjector everywhere!

I had a conversation recently with a Food Allergy Mom whose 18 year old son is no longer remembering to bring his EpiPen with him when he leaves the house. She asked me what could she do? It brought up an interesting conversation about food allergies, safety and teenager’s brains.

Our son, Morgan, is extremely good about remembering his EpiPen. I think there are a few reasons for that:

1.  Morgan well remembers his last anaphylactic reaction to fish when he was 10 years old. If your child was an infant when he experienced anaphylaxis, he may not remember what it felt like to have a severe allergic reaction. He may discount the likelihood of experiencing any type of reaction, especially if he says, “I’m not eating, so there’s no need to carry it.” Which leads us to the next reason…

2.  Our family has specific safety rules. One of those rules is that he always carries his EpiPen on his person. We also have rules that require him to wear a helmet when biking, and wear a seat belt when riding in a car. If you stick with these rules, it’s easier for it to become a habit.

3.  Morgan started carrying his EpiPen in a fanny pack when he was 4 years old. He got accustomed to being responsible for it. He wasn’t allowed to carry it at school until he was in 5th grade per the Colorado law. Once he was allowed to wear it in school, we checked each day that he had it on his belt loop. For a while he carried one EpiPen in a flashlight holder on his belt. Now, he carries two EpiPens in a Garmin GPS pack inside his pants pocket.

4.  Morgan developed a system of stacking the items he needs each day. He stacks his cell phone, wallet and EpiPen pack on his desk so he always knows where they are when he’s preparing to leave the house.

5.  We were willing to turn around and go home to pick up his EpiPens should they have been forgotten. That showed him how important they are. Also, when he first began to travel with his Speech/Debate team, I would ask for a gift: please show me that you have your EpiPens. It allowed me to stay a little calmer knowing that regardless of what occurred during his trip – at least he had his EpiPens!

6.  My husband and I recognize that forgetting things is part of the teenage brain. He isn’t mature enough to realize the consequences of his actions. Therefore, it’s our job as parents to not allow him to engage in such risky activities where the consequence for his action far outweighs the oversight. In other words, if Morgan is caught speeding while driving, he will get a ticket. That is a reasonable consequence. If he forget his EpiPen, that could have life altering consequences. That’s too much of a consequence for a seemingly mild oversight. If Morgan wasn’t willing to carry his EpiPen, or was consistently/purposefully forgetting them, we would curtail his activities until he could prove he was responsible enough to properly care for himself.

As Morgan prepares to go to college, we have asked him to be completely responsible for all of his medications. Remembering to take his asthma medications daily will be vital for him to remain healthy at school. We still have about 6 more months to ingrain this in him! It is a process, but when moving out is tied to performing certain responsibilities, it’s amazing how remembering medications can become a priority.

There’s a New Food Allergy Organization You Want to Join!



There’s a new Food Allergy Organization that YOU want to join – FAACT – the Food Allergy & Anaphylaxis Connection Team. I’m so honored to be a part of this new organization with five other dynamic Food Allergy Advocates! Every one of us manages food allergies in our homes with at least one of our children. Every one of us has been a food allergy support group leader. We know what it’s like to live with the threat of anaphylaxis. We get it! That personal connection makes FAACT the organization that you want to become a part of.

Here is the press release for this great new non-profit organization. We intend to be your voice in the food allergy world!

Food Allergy & Anaphylaxis Connection Team (FAACT) Launched to educate and advocate for all individuals and families affected by food allergy and life-threatening anaphylaxis

Life-threatening food allergies affect more than 15 million Americans, including 6 million children

(West Chester, Ohio) A new nonprofit organization launched today is taking the American public and the food allergy community to a whole new level of support and compassion. The mission of the Food Allergy & Anaphylaxis Connection Team (FAACT) is to educate, advocate, and raise awareness for families and individuals affected by food allergies and life-threatening anaphylaxis. FAACT is the brain child of CEO Eleanor Garrow-Holding, who has created a team of top U.S. advocates and a world-renowned Medical Advisory Board.

Garrow-Holding provides leadership for all of FAACT’s initiatives and programs, including conferences across the country, education for school and restaurant staff, and statewide legislation and civil rights advocacy for students. FAACT will also grow the very successful Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that Garrow- Holding founded in 2009.

Among her work in the food allergy arena, Garrow-Holding served as vice president of education and outreach for the Food Allergy & Anaphylaxis Network for almost four years, where she presented at national and regional conferences about food allergy management in school and restaurant settings and educated personnel in schools and school districts across the country. She also advocated for the Food Allergy & Anaphylaxis Management Act (FAAMA) on Capitol Hill with her son and helped pioneer the School Access to Emergency Epinephrine Act that was recently signed into law by President Obama. She has been interviewed extensively by the media and has written for Allergic Living and Living Without magazines. She has also worked to increase food allergy awareness among staff at numerous food industry companies and entertainment venues, including McDonald’s Corporation, The Hain Celestial Group, Mars Chocolate North America, and all SeaWorld Parks.

“Many tragic and preventable deaths have occurred through the years from anaphylaxis,” says Garrow-Holding. “To think that a life can be lost simply by coming into contact with a food item is motivation in itself to arm and educate the community. Food allergy is a chronic illness and a life- long journey with social and economic challenges. FAACT will provide professional resources and guidance for families, peer-to-peer support, podcasts, webinars, restaurant and educational materials, civil rights advocacy, government relations, and so much more. We are linking our families to your families to ensure the safety for everyone affected by food allergies and anaphylaxis.”

By networking with other food allergy organizations, FAACT is also able to supply the most up-to- date resources and provide a more cohesive level of support to patients and families by some of the nation’s most dedicated advocates, all with personal connections to allergic disease.

The leadership base of FAACT includes civil rights attorney Amelia Smith Murphree, founder of “Food Allergic Children’s Education in Tupelo;” Karen Underwood Harris, president and founder at “Food Allergy Kids of Atlanta;” Thanita Glancey, president of the “Loudoun Allergy Network;” author Nicole Smith, president and CEO of “Allergic Child;” and Los Angeles media producer Yael Kozar, who leads “CA, Allergy Support & Anaphylaxis Prevention” and created “The Anaphylactic Allergy Podcast”.

For more information about FAACT, please visit

Media Contact:
Yael Kozar, FAACT Communications and Media Relations  (310) 415-7180 or

FAACT is able to consult on news stories and provide medical experts, spokespersons, and subjects while supplying up-to-date information on food allergies and anaphylaxis for your future media needs.

Kissing & Food Allergies

When our son, Morgan, was diagnosed with food allergies at 18 months old, I never thought that kissing my child could cause problems! Yet, if anyone has eaten their child’s food allergens and then given a cheek buss – well, you may be in for a big surprise! Even that minimal contact can cause an allergic reaction in a highly sensitive child. Passionate kissing can cause full blown anaphylaxis. So, it’s important to know the facts of what works with showing affection for your loved one after you’ve eaten their food allergen(s).

In 2006, Dr. Scott Sicherer of Mt. Sinai researched peanut allergen exposure through saliva.  The research looked at how long the peanut protein remained in saliva. The protein is amazingly persistent, even after teeth brushing or chewing gum. The research conclusion was as follows: “Patients with peanut allergy require counseling regarding risks of kissing or sharing utensils, even if partners have brushed teeth or chewed gum. Advice to reduce risks, though not as ideal as total avoidance, includes waiting a few hours plus eating a peanut-free meal.”

Dr. Sicherer’s research did not involve cheek kissing or a “Grandma buss”. However I have heard from parents that their child has experienced welts, hives and/or a rash after receiving such a kiss when Grandma has just eaten the child’s food allergens. It’s vital to be cautious and for all family members to understand that even this small act of love can prove dangerous for a child with food allergies.


Once a child with food allergies becomes a teenager, that’s when the real fretting comes into play! I would encourage you and your teenager to speak with your allergist about this topic. This has also been a frequent topic at the Teen Summit. While it might be overwhelming for your teen to talk about kissing, keeping them safe supersedes potential embarrassment. When we spoke with Dr. Fleischer at National Jewish Health about kissing, he encouraged Morgan to have his date either not eat food that he’s allergic to or to eat another non-allergen meal and wait at least 2 hours after an allergy-laden meal. That could make for a very long date! Or, better yet, it makes for the necessity of having a conversation with his date prior to the day of the date.

Kids with Food Allergies has a great resource for Teens and Kissing here. The magazine, Allergic Living, has an article on the topic here.

I interviewed Sloane Miller, aka Allergic Girl, about her kissing experience that ended in anaphylaxis. Check out my interview here. Who would have thought that a beard would be the culprit!

Go out there and pucker up!





Experiencing Anaphylaxis

When our son, Morgan, was diagnosed with life threatening food allergies, we were lucky that he had ‘only’ previously experienced a mild reaction to touching peanut butter and had experienced a moderate reaction to his MMR vaccine. The combination of these two events caused our family care physician to realize that Morgan’s allergic reactions were beyond his medical training. He sent us to an allergist who diagnosed Morgan with several life threatening food allergies.

By following up unidentified sources of mild to moderate reactions with blood and skin prick tests, we discovered Morgan had more and more food allergies – all likely to cause anaphylaxis. At 10 years old, he had a diagnosis of peanut, tree nut, sesame and shellfish allergies. Some of these he hadn’t even eaten – he had only touched them!

At 3 years old, he had tested negative to fish, which allowed us to falsely assume he could eat trout on a camping trip the summer before his 5th grade year in school. This ended with the life altering experience of anaphylaxis. You can read about Morgan’s story here and about my husband’s story of the camping trip here (go about half way down the page).

For anyone with diagnosed food allergies, there is a possibility of anaphylaxis. Those at the highest risk for life-threatening food-induced anaphylaxis and resulting fatality are adolescents and young adults; people with known food allergy and a previous history of anaphylaxis; and people with asthma, especially with poorly controlled symptoms. Peanuts and tree nuts cause the majority of fatalities from food-induced anaphylaxis. Fatalities are also associated with delayed use or improper dosing of epinephrine.

Our son is now 17 years old, with a previous experience of anaphylaxis, has asthma (controlled at the moment), and has peanut and tree nut allergy. He has several strikes against him, so he ALWAYS carries his two EpiPens! He was old enough when he experienced anaphylaxis that he well remembers the symptoms. Some children who experienced anaphylaxis as a baby may not remember the experience. By the time they get older, they forget why their food allergies are a big deal. If your child is in this category, help them to remember by discussing with your child and your allergist why food allergies need to be taken seriously. We’ve found that doctors can get points across that we parents never can.

Your child may not yet have experienced anaphylaxis, in fact only 38.7% of children with self-reported food allergy have. This is another sub-set of food allergy patients. Sadly, they are frequently the families we read about who neglected to carry an EpiPen with them any more. Or they didn’t read a food label and just figured a product was safe. Or they never realized how serious food allergies are. Then, the child experiences anaphylaxis for the first time and is not prepared with medication to counteract the effect of the allergen.

For those of you who have experienced anaphylaxis with your child – and believe me it feels that way! – I don’t have to explain the terror of the event. I felt as if our world had tipped over. I just read the Summer 2013 edition of Allergic Living in which Gina Clowes, Parenting Coach, wrote about how to help your child after an anaphylactic reaction. It’s a great read and I’d highly suggest it.

While it’s difficult to move on after experiencing anaphylaxis, we felt it was important to allow our son to continue to live his life – go to school, participate in Boy Scouts and go on camping trips again. We also are keenly aware of what can happen with just ONE BITE of an allergen! We live and learn. And Morgan ALWAYS carries his 2 EpiPens just in case!

How Vigilant Is Your Family With Food Allergies?

Having read about yet another tragic death from food allergies last week – a peanut allergic 11 year old boy in Utah – it reminds me of the discussions we had with other food allergy families about how vigilant they were. Some families didn’t have the benefit of the knowledge about food allergies from an allergist. Some didn’t properly know how to recognize the symptoms of an allergic reaction. Some felt that an overly vigilant lifestyle around food allergies would thwart their child’s ability to enjoy life. Other families were so scared of an allergic reaction that they hovered over their child not allowing them to ever be without parental supervision. We’ve found the more understanding and awareness we have of the potential for an allergic reaction, the more able we are to make an informed decision about  what level of vigilance is needed. With food allergies, once a family figures out how vigilant they need to be, sometimes it’s too late – and that is beyond tragic!

When our son, Morgan, was diagnosed at 18 months old with a severe peanut allergy (and an egg allergy too), he had experienced hives upon touching a peanut butter sandwich. After that, we were in that stage of denial, hoping that the skin prick test was an anomaly. I thought maybe he would outgrow the peanut allergy. He was able to eat eggs baked in foods just fine, so maybe we were over reacting to the food allergy diagnosis.

A year or so later, at the local school playground, I was talking with another Mom whose 8 year old son had a peanut and egg allergy. She told me about how they never tell the school about his food allergies because he only reacts if he eats the food. And according to her, he knows to never eat peanuts or eggs. She also said something like, “Besides we end up in the ER a couple of times a year, but it’s no big deal.” I was horrified and scared! Was that in our future? Was that really the level of vigilance that was acceptable?

Something shook me to the core about that conversation, and I decided that our family wasn’t going to live that way. There had to be a way to stay away from Morgan’s food allergens and to keep him safe. We needed some agreements to keep him safe in all situations. If my husband and I agreed about these when he was a little boy, Morgan could then continue living by these rules when he took on keeping himself safe.

Here were our rules about food:

Eat foods that have an ingredient label

With the labeling laws in existence now, even this can be problematic if a teacher is expected to read an ingredient label and understand that “May contain…” is a voluntary statement on a label. That’s why we needed more rules than just this one! We read the label of every product along with Morgan from his earliest years. I believe Morgan wanted to learn how to read at a very early age to be able to read food labels.

Read every ingredient label every time you purchase a product

Product ingredients change even if the product packaging stays the same. We made this mistake once with a Klondike ice cream bar. We had purchased this product for at least a year and while the packaging stayed the same, the product contained a “may contain peanuts” warning that I didn’t read. He had a horrific stomach ache after eating, and we were able to trace it back to the ice cream bar. We were graced with a warning on this!

Any baked foods that don’t have an ingredient label aren’t allowed

Think about bake sales at school – a disaster waiting to happen!! Another little girl in Morgan’s kindergarten class had a peanut allergy. She had never had a reaction, but since her older brother had a peanut allergy the parents had her tested too. They had an EpiPen for her at school, but they didn’t give her any rules about her peanut allergies other than “don’t eat peanuts.” Therefore, she would ask another child at a bake sale, “Does this have peanuts in it?” I cringed when I heard this. Thankfully, she outgrew her peanut allergy and nothing bad happened along the way. This situation could have easily turned out otherwise.

Eat only foods that Mom & Dad give you or approve

When Morgan would go to a birthday party, I would either prepare a safe snack for him OR he would decide to not eat OR on the rare occasion that the food was safe, I would have read the label and approve it for him. Usually this was with ice cream. Morgan has brought his lunch to school every day. While the school is required to provide a safe meal for him, we were able to provide a safe lunch for him and did so. It was one less worry for us.

– Carry a Chef Card for Restaurant eating

Eating at a restaurant with food allergies is a big deal. Carrying a Chef Card really helps to let the wait staff and the Chef know EXACTLY what your child is allergic to. Better yet, speak with the chef about cross contamination and how to keep your child safe. Have your child practice giving the information to the wait staff when they get older so that they will be able to do so alone when they are a teenager.

Carry Your EpiPen AT ALL TIMES

There will be mistakes with food allergies. Having two EpiPens with you at all times will ensure that when there is a mistake, you have this life saving medicine within arm’s reach. Additionally, keeping an EpiPen in the car will ruin the medication (too hot) or the injector device (too cold).

Don’t make food allergies the center of your child’s life

Morgan has been able to do so many activities because we look at the opportunity for him to enjoy and experience life first, and then we figure out how to manage his food allergies. He is an intelligent, loving, wonderful son who happens to have food allergies.

AT 17 years old, Morgan now is responsible for caring for himself when it comes to food allergies. He’s very cautious and makes good decisions. And he ALWAYS carries his EpiPens. Yep, you’re reading a little Mother Pride on that one!!

Food Allergy Anaphylaxis – A Tragedy

Some children will have mild reactions to eating a food they are allergic to. They may experience watery eyes, a runny nose or hives, and then quickly recover with a dose of Benadryl®. Still others may vomit and immediately feel better. Other children will experience anaphylaxis, the most severe of allergic reactions and end up in the emergency room receiving shots of epinephrine. Tragically, some children will die.

This is a picture of Sabrina Shannon, a 13 year old Canadian girl when she died at school from anaphylaxis to dairy in 2003. Sabrina’s mother, Sara, has become one of the most renowned advocates of food allergy guidelines in schools to help children with food allergies stay safe. I’ve met Sara, and to say that she is wonderful doesn’t begin to explain her fortitude. I can’t imagine becoming an advocate at the level that she has – and she lost her only child. She understands how serious anaphylaxis is. Now, she just needs to impress that upon the rest of the world.

Friends and family couldn’t understand how vigilant we needed to be when our son, Morgan, was diagnosed with food allergies. How can anyone die from eating one bite of a food? Is it really necessary to read EVERY label of EVERY food that is eaten? We heard these questions and more: Why can’t your child eat the cake I made for the birthday party? Won’t he grow out of his severe food allergies?

It is estimated that five Americans die each day from anaphylaxis (from allergic reactions to medicines, food and/or insect stings). Tens of thousands of emergency room visits occur each year from anaphylaxis.

The most recent tragedy involved a 15 year old British boy who died after eating what he thought was a safe carry out meal at a restaurant. You can read about that story here.

Accidents occur, and for the food allergic child, such an accident can cause death. It is the reality of what we live with daily. We try to not focus on this; instead we try to gain an understanding of what we can learn from these tragedies. This is a preventable death, and our family does everything we can to stay safe and enjoy life.

In the April 2007 “Journal of Allergy & Clinical Immunology” research was submitted on the deaths of 31 individuals who suffered fatal anaphylaxis. Peanuts accounted for 17 of the deaths (55%); tree nuts caused 8; milk caused 4; and shrimp 2.  Epinephrine availability is a key factor in the cause of death with only 4 of the fatalities having received epinephrine in a timely fashion.

What can be learned from these tragedies for those of us with food allergic children?

It seems to me that education and awareness are the footwork that is available to us all. The more people are aware that my son has severe, life threatening food allergies, the better the chance that he will not experience anaphylaxis. Telling family members, friends, teachers, etc., about his food allergies is necessary so that they realize what they eat could potentially impact him.

Secondly, my son needs to be his own advocate. I hope that impressing a teenage girl won’t scramble his brain to the point that he forgets what he’s allergic to now that he’s a teenager! Learning at a young age how to advocate for his safety was something we worked on daily. Lastly, our allergist has told us that children with a dual diagnosis of asthma and food allergies have much more likelihood to experience anaphylaxis. For that reason, more precautions will have to be practiced. For better or worse, my son will have to know what his date ate for dinner, and maybe even for lunch!

Dr. David Fleischer, an Allergist & Immunologist at National Jewish Hospital in Denver, told Morgan and I that Morgan could have a reaction to kissing a girl if she ate one of his allergens within the previous 2 hours. She could mitigate this issue by not eating the particular food (best choice!) or by eating some other food or brushing her teeth to remove the allergen.

Various research has shown that teenagers are the highest risk group for fatalities from allergic reactions. Teenagers, in general, tend to believe they are invincible, and are more likely to take risks. When it comes to food allergies, they are less likely to have an EpiPen immediately available, and are no longer under the watchful and careful eye of their parents. Only 61% of teens reported always carrying their EpiPen in a “Risk Taking Study” by Dr. Hugh Sampson of Mt. Sinai Hospital.  In our house, we want 100% compliance with EpiPen carrying!

Food allergy reactions are extremely serious. I want to give my son every chance to learn from others, be a good advocate and enjoy life … while always carrying his two EpiPens!