At the recent Food Allergy Bloggers Conference, there was an excellent session lead by Dr. Abby Herzig of WeBelay .

Dr. Herzig is a Child and Adult Clinical Psychologist who led one of the best discussions I’ve ever participated in about food allergy anxiety. The best part was the audience participation. So many Moms and Dads shared about their own anxiety, and that of their child. Some shared that their child was way too brazen creating more anxiety for them as the parent, while others were concerned that their child’s recent allergic reactions were affecting their ability to enjoy food and eat.

I had so much anxiety when my son, Morgan, was diagnosed with peanut and egg allergies in 1997 at the age of 18 months old.  My anxiety was high because Morgan reacted not only foods, but also to pollens in the environment – dandelions were one of his worst reactions – and to dogs and cats. He also had weeping wounds of eczema all over his body. All of this created a fight or flight response in me every time I took him out of the house. I used to joke that Benadryl was a food group for him.

When children are too young to speak for themselves, it’s the responsibility of the parent to educate others about food allergies – and any other allergies too. And that’s a heavy load at times. How to stand up to extended family  was a topic in the conference session, and many different ideas were brought forth.

Having everyone in the family over to our house was how we managed it. We cooked all the food that our son was going to eat, and we asked that none of his allergens – which grew to a list of peanuts, tree nuts, sesame, fish and shellfish – be brought into the house. (He outgrew his egg allergy by middle school.)

For some parents in the session, spending a holiday cooking for other family members wasn’t what they wanted to do. Some had made arrangements to go to other family’s homes with the caveat that none of their child’s food allergens would be served. For us, the biggest issue was the dog and cat allergies, and all of our extended family had one or the other in their homes.

At the conference, we discussed that managing extended family helps our children to learn boundaries as we set those boundaries about what is safe and what isn’t safe for our child. It isn’t easy to stand up to one’s mother-in-law, but showing a child how to do that gives lessons that no amount of talking can provide.

Another great part of the session was the support that everyone gave and received. Too many times on social media, I’ve found that parenting styles can be criticized. Food allergy accommodations are questioned by others as too lenient or too strict. When you’re looking someone in the eye during a conversation, it’s much easier to support them where they’re at, and to see their concern.

For those with children brimming over with anxiety, we spoke about the need for counseling to get underneath where the anxiety is coming from. Some children have stories in their mind about a recent anaphylaxis episode that might not actually be factual. Yet it’s important to discover what the story is, and to mitigate the anxiety.

My son has never shown much anxiety over his food allergies, even when he experienced anaphylaxis during a camping trip. When my husband called me from the ER, he put my son on the phone to let me know he was fine. My son’s first words were, “I’m not coming home.” Of course, I was an anxious mess hearing the harrowing tale of eating his first bite of fish, and I wanted to see him in person to ensure everything was okay. However, I yielded to his sense of himself, and agreed that he could stay with his Dad watching over him cautiously. Not every kid would feel that way after experiencing anaphylaxis, and that’s okay too.

If you or your child are experiencing debilitating food allergy anxiety, where depression is setting in and/or eating is becoming a difficulty for your child, I’d like to suggest: Share your feelings with a professional! You don’t need to suffer, nor does your child. Some of the strongest people I know ask for help.

If you or your child are experiencing food allergy anxiety on a situational basis, there are many articles and research online that might be helpful:

Food allergies linked to childhood anxiety

Allergy’s High Anxiety: How to Tame Kids’ Fears of Food Reactions

The link between food allergies and childhood anxiety

and Dr. Scott Sicherer’s newly updated book, Food Allergies: A Complete Guide for Eating When Your Life Depends on It also has information about how to manage food allergy anxiety.

The online food allergy community can be a great resource too. There are Facebook pages for all age ranges, and various combinations of specific food allergies that are managed. Some local communities have in-person support group meetings on a monthly or quarterly basis, where you can meet people face-to-face managing a lifestyle similar to yours.

I’ve found the best anxiety reliever is to talk with an understanding friend…preferably someone who has been there!

I remember when I first ran into another Mom whose son had food allergies. My son, Morgan, was 18 months old happily playing at the park. I was chatting with another Mom watching her 10 year old son playing. In the course of the conversation, she mentioned that her son had peanut allergies. Since Morgan had just been diagnosed at that time, I was ready for all the scoop on managing the allergy appropriately. She told me to be prepared to be in the Emergency Room a couple of times a year, like they were. She recounted a story about her son eating a cookie, which turned out to have peanut butter in it, and ending up going to the ER. I was horrified!

At that time, I didn’t know much about managing food allergies, but I knew that a couple of trips to the ER every year wasn’t acceptable to us. This was the beginning of an education about food allergies for me and for our family. Mostly, we wanted our son to know that vigilance about his food allergies was going to be required.

So what makes a family too relaxed about food allergies? Through the years, I’ve found that families who haven’t received all the information about how serious food allergies can be tend to be too relaxed. Sadly, these same families are frequently the ones who don’t carry an EpiPen or Auvi-Q with them at all times, and some haven’t even been prescribed an autoinjector. When anaphylaxis occurs, they say that they never realized how serious a food allergy could be. It’s tragic.

This points to another issue – many families only see their primary care physician and not a Board Certified Allergist about food allergies. We were so lucky that our primary care doctor knew when he was out of his league with Morgan’s reactions. He referred us to an allergist for proper care. A Board Certified Allergist should be able to distinguish the false positive from the actual food allergy. An Allergist can determine whether the wheeze is from asthma or another source. It’s their specialty.

Then there’s the too relaxed family where the child hasn’t had any food allergy reactions in years. It’s easy to become complacent. Like a snake in the grass, that’s when the complacency will come back to bite you! Just because a child hasn’t had a reaction in years doesn’t mean they’ve outgrown the allergy. It’s important to have your child retested to determine the level of their allergy as they age. We have done this every 4-5 years. Morgan hasn’t had anaphylaxis since he was 10 years old (and that was to fish to which he had previously tested negative!). He still tests allergic to multiple foods. He hasn’t grown out of any of his ‘original’ food allergies. He’s just been cautious!

There’s also the child who uses food allergies and complacency to ‘get back’ at a hyper vigilant parent. Instead of being empowered to take on their own food allergies, they’ve resigned their condition to Mom or Dad to manage it. We ensured that our son knew he was responsible for his food allergy care and management. From the age of 4, he carried his EpiPens on his body when we left home. He began carrying his EpiPens at school once the law was passed in Colorado allowing him to do so, which was when he was 11 years old. This encouraged his awareness of taking care of himself. We involved Morgan in every decision about going to parties, family gatherings, and school activities. He needed to let us know what he felt comfortable with when food was involved. This encouraged him to be responsible for his food allergies.

I recently was at a parent event at the University of Denver speaking to a father about his son’s study abroad experience. I mentioned that Morgan was choosing among universities in English speaking countries because of his multiple food allergies. The father says to me, “My son has peanut allergies, and we never thought about mentioning that.” Thank goodness his son studied in Australia! For Morgan, he’s very aware that a language barrier could mean the difference of a wonderful study abroad experience and one where he ends up in an ER!

We aren’t relaxed about Morgan’s food allergies, and we aren’t so hyper-vigilant that he can’t live life. There’s a balance in between those two extremes. It takes practice and lots of communication with your child to find the middle ground.

There has been an abundance of publicity surrounding Food Allergy Bullying recently. My now 17 year old son, Morgan, experienced bullying around his food allergy in first grade, so I certainly empathize with this problem. What concerns me, however, is that it appears that news organizations, research and a public service announcement continue to focus on the problem and not on a solution. With many more years of parenting under my belt, experience of what does work and a long term view of bullying, I want to share some solutions to Food Allergy Bullying.

First, let’s look at some of the history.

In October 2010, a research study by Dr. Scott Sicherer and Anne Munoz-Furlong (then CEO of FAAN, the Food Allergy & Anaphylaxis Network) and others, published a study of bullying among pediatric patients with food allergy. Their calculation of the percentage affected: “Including all age groups, 24% of respondents reported that the food-allergic individual had been bullied, teased, or harassed because of food allergy.”

The Food Allergy Bullying publicity was refueled with a research study reported in the January 2013 Pediatrics Journal of the American Academy of Pediatrics that cited “31.5% of the children and 24.7% of the parents surveyed reported bullying specifically due to FA, frequently including threats with foods, primarily by classmates.”

FARE (Food Allergy Research & Education) created a Public Service Announcement about Food Allergy Bullying: It’s Not a Joke, and a recent New York Times blog post by Catherine Saint Louis called “In Bullies Hands, Nuts or Milk May Be a Weapon” furthered the discussion of this issue.

All of these sources talk about the problem of food allergy bullying, which does raise awareness about food allergies in general. The raising of awareness is a good thing, and I will certainly agree that Food Allergy Bullying is a problem. However, none of these sources are providing a solution to it. Emotional stories about children being bullied pull at our heart strings. They cause fear for parents of children with food allergies, especially if those children are young and not yet in school. Parents of young children who hear only that the school cafeteria is a scary place have expressed to me “that’s why I’m going to homeschool my child.” Rather than scaring parents (and children for that matter!), or allowing parents to think that the only solution to Food Allergy Bullying is to homeschool – let’s start talking about what parents and children with food allergies can do. And what schools and school employees can do. Let’s stop talking about fear and start talking about the existing laws, accurate statistics and empowering our children. Fear and frothy emotional appeals gain headlines, but they don’t help our children to live in a world that doesn’t yet understand the seriousness of food allergies. Let’s be educators ourselves, and talk solutions.

What are the solutions to food allergy bullying that we need to be talking about?

We need to be talking about the laws that are available for children with food allergies in schools. 

1. A child with a food allergy has the right to an evaluation for a Section 504 Plan by the public school district where the child will attend school.  This Plan will list the accommodations necessary for that child to receive FAPE – a Free Appropriate Public Education. The ADA Amendments Act of 2008 have made big changes to what is considered a disability in school. The ADA no longer focuses on the disability but on what services a child needs. The 2008 amendments expanded the list of major life activities to include eating. While many parents take exception to the label ‘disability’, we’ve found that the benefits of having a 504 Plan in school include inclusion and safety. The old idea of having Mom ask the teacher nicely to not have allergens in the classroom is passe. If your child needs accommodations such as a peanut-free classroom, get it in writing in a 504 Plan. If another parent or child takes exception to the peanut-free classroom, they can deal with the principal of the school. As a food allergy parent, you shouldn’t have to deal with an upset parent who can’t send in Snickers bars for a classroom treat. That’s the job of the school principal. This keeps you and your child anonymous, and therefore much less likely to be bullied.
2. The Family Educational Rights and Privacy Act (FERPA) is a Federal law that protects the privacy of student educational records. A school employee cannot tell ‘everyone’ about your child’s food allergy. In fact, the school employee will only tell those who need to know – for example, the school nurse, principal, teacher(s). Additionally, it has been our experience that not every parent and child in your school needs to know that your child has a food allergy. Telling close friends is important. The old idea of having Mom stand up in front of the entire school to tell everyone that your child has a food allergy is not only not helpful, but can be harmful for your child if it puts a target on him or her. Again, keeping your child’s food allergy on a ‘need to know basis’ keeps your child anonymous and much less likely to be bullied.
3. Educate yourself about your state’s anti-bullying law and your school district’s anti-bullying policy. Every state, except for Montana, has some type of school anti-bullying law. These laws could certainly be widened to cover food allergy bullying specifically. When Morgan was bullied in first grade by another first grade boy waving a cracker saying “I’m going to kill you with this peanut butter cracker” the incident was taken seriously as a bullying incident. Within one hour, the ‘bully’ was suspended from school by the principal. His parents were brought into school and educated about food allergies. This was in 2002, long before there was food allergy awareness. Our school district has an anti-bullying policy, and our principal followed that policy. It made no difference that the offending item was food – the behavior was bullying.

We need to have accurate statistics – not just self-reporting.

Colorado captures bullying statistics based upon any child that is in  a ‘protected class’  (race, color, religion, disability, sexual preference, etc.) I’ve spoken with the Director of Legal Relations for our school district who stated that with disability as a protected class in Colorado, a child with food allergy who is bullied in school, should have a report sent to the state detailing the bullying incident. There is more work to be done to educate the educators about food allergy as a disability, and therefore as a protected class. The research cited above about the statistics of Food Allergy Bullying are all based upon self-reporting or parent-reporting. I’d much prefer to have exact statistics rather than self-reporting which tend to overstate what is occurring. Again, this creates fear for parents of children with food allergy, who end up believing that their child has a much higher chance to be bullied than what may be true.

We need to empower our children and quit the fear mongering.

My friend, Dana Gordin, wrote an article for Today Moms entitled “A Family’s Battle Against Food Allergy Bullying” where she discussed their family’s experience of empowerment. My son, Morgan, and I were interviewed for Health Day last year about the topic also. A quote from this article is a key part of the empowering solution: “The incident involving Morgan Smith, who is also allergic to tree nuts, sesame, fish and shellfish, was taken seriously at his school. The boy who chased Morgan was suspended for the day. He never bullied Morgan again, and the two even later became friends.”

My son never viewed the school cafeteria as a scary place. He wasn’t afraid of his classmates, nor was he afraid of his food allergies – even after he experienced anaphylaxis at age 10 to fish on a camping trip. We helped Morgan to make choices – safe choices – for his life. He viewed the bullying incident as a minor part of his childhood. After the bullying incident, we didn’t move to a new house, or pull Morgan out of school. In fact, he and ‘the bully’ became friends, and the boy became one of Morgan’s biggest advocates. This boy’s house was the only place Morgan could go for a sleepover, because the family understood food allergies so well. They are friends still today.

Morgan had other instances of children in grade school harassing him because of his food allergies. The school principal took those incidents seriously by calling in the parents and educating them, and by suspending a boy in 4th grade who wouldn’t move out of the peanut-free zone in the cafeteria with his Butterfinger bar. Our family continued to work with the school and school district to raise food allergy awareness. I sat on numerous committees within the school and PTO, and in the school district on the District Accountability Committee. This allowed other parents and district employees to get to know me. I became known as “The Food Allergy Lady.” I’ve certainly been called worse! When I suggested that a Food Allergy Task Force be created in our district to help increase food allergy awareness, the superintendent agreed. The Task Force continues to this day helping to ensure that the district guidelines for keeping food allergic children safe at school are followed, and that we continue to raise awareness about food allergies.

Morgan continued to self-advocate throughout elementary and middle school. Now in high school, he teaches his friends how to operate an EpiPen, how to help keep him safe during lunch and on overnight trips with his high school Speech/Debate team. Morgan isn’t afraid of living. He has food allergies, but his food allergies don’t have him.

Empower your children. Utilize the laws available for your child with food allergies. Don’t buy into the fear. Believe in the power of forgiveness. A bully might become your child’s friend and a food allergy advocate!

This is our daughter, Michaela, on her first day of Kindergarten in 1996. It’s been a long road of education since then!

We didn’t know that Michaela would come to be diagnosed with several learning disabilities, or that she would also have multiple broken bones from osteopenia caused by celiac disease, or that all the stomach aches she had for years wasn’t because of anxiety about school, but rather from a mast cell disorder.

We were new parents to a second child, Morgan, who on that day was just 7 months old and yet to have his first allergic reaction.

I hear from so many of you who manage children with food allergies in addition to diagnoses of Eosinophilic Esophagitis (EoE), Celiac Disease, Attention Deficit Disorder, Dyslexia, Autism and more. Sometimes all of these diagnoses are in one child, or they span multiple children – all with different needs, and many times with different food allergies! It’s not easy on us parents, and it can become very disheartening if you’ve heard messages from teachers or others similar to what we’ve heard, “Don’t expect too much from her.”

My husband and I did and do expect a lot from our two children. We expect them to listen to their bodies and to honor their physical needs – to carry EpiPens and Benadryl always, to eat safe food always, and to take their medication appropriately and consistently. We expect them to listen to their brain and to challenge themselves academically – to try their hardest even if they receive a grade of a “C” or worse, to go to school every day and to try to learn. We expect them to listen to their heart and to follow their passion in life – to be of service and helpful to others and to treat others with respect even if they haven’t received that in return.

We encourage them to find a higher power in their life that brings them joy and peace. We encourage them to love and value each other and to spend time together. We empower them to self-advocate for their needs with their friends, family and especially at school. We empower them to question the adults in their life, because sometimes even an adult doesn’t know the safe food to feed them.

Mostly, we enjoy them. We enjoy their sense of humor; we enjoy laughing and laughing until we cry; and we enjoy the life that all these challenges of so many diagnoses have provided to our family. All of these things together have made our children who they are.

When I heard a psychologist say to me “Don’t expect too much from her” when my daughter, Michaela, was in 3rd grade – I didn’t have the 22+ years of parenting under my belt that I do now! I had just heard a list of diagnoses a page long from the experts in a “child study” the school performed on my daughter. We knew she was having difficulties in school, but even that list of diagnoses the experts provided didn’t include celiac disease or a mast cell disorder which she was diagnosed with later.

She struggled for years with dyslexia, for which we got her a reading tutor; ADHD, for which we determined to not medicate her but instead to completely change her diet away from foods with preservatives, colorings, sugar and caffeine; and an auditory processing disorder, for which we obtained a 504 Plan, along with the other two conditions. This combined effort still didn’t create ease and comfort for her to attend school. It took until high school to get the diagnosis of celiac disease. By that time, the enamel on her teeth had worn off, and she had suffered multiple bone breaks in her arms and toes! She was in college before she got the diagnosis of the mast cell disorder.

Michaela expected a lot from herself despite everything that she was experiencing. We didn’t focus on what she couldn’t do well. We helped her to focus on everything that she could do – like laugh at herself when she made a mistake, think outside the box on school projects, intuitively know how others were feeling, and encourage her to embrace being different in her thinking processes.

I remember when Michaela graduated from high school. We were on our way to the graduation ceremony when she said, “I’m so glad I’m done. The last good year of school was kindergarten!” If that doesn’t make you feel terrible as a mother! Yet, she signed up to go to college at a local community college, and found that the college lifestyle fit her needs much better. She could schedule her classes later in the day, when she was ready to go to school. She could focus on an academic area of her choice – Communications (she was always good at talking, having gotten many infractions for chatting in grade school!) She started to understand that she was good at school when she could ‘do school’ the way it fit her.

She transferred to a larger school, the University of Colorado at Colorado Springs (UCCS), for her last two years. She didn’t like this school nearly as much since the classes were larger, and the professors not near as caring. However, she kept going, while working two jobs, and graduated in May with a GPA of 3.3! What a wonderful accomplishment for a child with so many diagnoses!

If you’re wondering if your child can do this – I assure you they can! Take it one day at a time, love your kids, be proud of their accomplishments however big or small. Don’t let a few diagnoses alter your hopes or your child’s hopes for the future.

It makes me think of Kermit the Frog who lamented being green, which is not unlike lamenting being diagnosed with food allergies, celiac disease, ADHD or any other thing. In the last stanza of the song, he sang:

When green is all there is to be
It could make you wonder why
But why wonder why wonder
I am green, and it’ll do fine
It’s beautiful, and I think it’s what I want to be

My son, Morgan, is now 17 years old and has a long time to process feeling ‘different’ from his peers. He frequently hears from other children with food allergies who ask him questions like “Do You Get Tired of Being Different?” Morgan got the opportunity to answer this question in an email that he received earlier this week. I so enjoyed his response that I wanted to share it with all of you.

I can’t personally say I’ve ever been tired of being different; I actually rejoice in it! It makes me, ME. In the same way, having food allergies to peanuts, eggs, or animals makes you, YOU. I really enjoy being different. Why? Well, I went to a Boy Scout camp when I was younger called Camp Alexander. My mom and I really didn’t feel comfortable having the chef cook my food, so we pre-cooked and brought up all of my food for the week long camp – it was a lot of work, I know! But, it was completely and absolutely worth it.

While other Scouts were having bouncy macaroni or dried out cereal, I got to have steaming hot pancakes and sausage that I knew was both tasty and safe! If I wasn’t different, I’d never be able to have that awesome food; instead, I’d be stuck with the regular ol’ cereal. I really don’t like to be stuck with the generic stuff…it’s boring!

However, I know there’s a lot more to being different than just tastier camp food. Sometimes in school you may have to eat something different than all the other kids, and it really doesn’t feel good, right? I know the feeling. You just want to be like all the other kids instead of being different, right? Or, as you said, you have to have your mom organize all the food parties to make sure you’re safe. I’m sure you’ve been playfully teased about your food allergies – like kids complain about the fact that you just have to have food allergies. 

I say move on. Ignore them. I don’t know if you look up to someone or you want to be like someone, maybe a superhero. Iron Man maybe? I’m not sure. But if you do, just know they’re different too. They are someone SO different than everyone else and that is what makes them so special and awesome! 

I like being the “allergy child” or the “allergy kid.” It tells me they’re jealous. They don’t get special treatment (like kings. I mean, come on, we’re definitely treated like kings.) from their moms or dads or get special food simply because they’re different. They’re stuck with that plain ol’ bland cereal instead of awesome food that you like! I really do think they’re jealous. So, you know what I do? I have a lot of fun with my awesome food and ignore them.

It makes me a proud Mom to read my son’s response and to know that he means every word of it. I’m too am glad my son is different. We Moms didn’t ask to be on this path of advocating for our children with food allergies, but I for one am glad that I’m on this path with many other fabulous, intelligent Mothers who just want their children to be safe and happy!

When my son, Morgan, was little we were constantly trying to figure out what caused his red, weeping eyes. Or his runny nose. Or his bad eczema. Or his hives. It was a daily battle in becoming what I now call a “Food Allergy Detective.”

Truly, it was frightening to not know why he was reacting when we went to the library, for example. We’d bring home several books. I’d look over at Morgan and he would be a mucousy mess. We never quite figured out that reaction for sure. It was probably a combination of the fact that the library had a “Paws to Read” program where they brought a dog into the library on a weekly basis to listen as kids read. Morgan had bad dog allergies, but at the time I didn’t understand that the dog hairs left behind could be enough to cause a reaction for him. It could have been the various pollens, dust, smoke, peanut dust and dander on the books themselves. Or it could have been something that we never thought about.

All one summer, Morgan had horrific eczema. We thought it must have been the sunscreen we were using. I continued to purchase new and different products in an attempt to find the mysterious cause. It took years to figure out that it was the ‘kid foods’ at the pool where we frequented. Kid foods have lots of food dyes in them. Turns out that Morgan got eczema from all food dyes. We found this out when we eliminated food dyes from his diet, at the suggestion of our allergist. So the Popsicles he was eating daily at the pool helped to exacerbate his eczema. What a relief it was to come to that realization!

After Morgan had an anaphylactic episode to fish on a camping trip, we thought we could still grill fish at home. We’d grill it outside our house on the deck, use a special grilling ‘cage’ for the fish, clean up scrupulously afterward – and all would be fine. This worked for a few months. Then, one morning we weren’t so lucky. We had eaten fish the night before, and Morgan had been fine. But the next morning, his eyes swelled shut and then began bulging. We dosed him with steroid eye drops, Benadryl and raced off to the allergist. Our doctor determined that Morgan had touched the fish that probably wasn’t cleaned entirely off the countertops or some surface inside our house. He had likely then wiped his eyes. That was a frightening experience! We determined then that it’s not worth eating fish even with preparing it outside on the grill. We just aren’t able to be careful enough to ensure his safety.

All this detective work has been necessary to try to have some control over Morgan’s environment. Ultimately it’s helped him to gauge whether a situation is safe for him. We talked through many situations with him as he was growing up to determine what might happen based upon past experience. He is one of the most sensitive food allergic children that I know. We learned though how to keep him safe. We’ve found that it’s REALLY necessary to have a safe home. It allows his immune system to be on ‘pause’ while he’s sleeping.

As for Mom here – I’m sure the local police force would appreciate my detective abilities. I’ve honed them well through the years!

Sloane Miller, food allergy advocate, author and life coach, is founder and President of Allergic Girl Resources, Inc., a consultancy devoted to food allergy awareness.  She consults with private clients, the healthcare, food and hospitality industries, government and not-for-profit advocacy organizations. Ms. Miller earned her Master of Social Work at the New York University’s Silver School of Social Work and her Master of Fine Arts in Writing and Literature at Bennington College. In 2006 she started Please Don’t Pass the Nuts, an award-winning blog for and about people affected by food allergies. In 2011, John Wiley & Sons published Ms. Miller’s first book, Allergic Girl: Adventures in Living Well With Food Allergies, the definitive how-to guide. Ms. Miller combines a lifetime of personal experience and passion with professional expertise to connect with people about how to live safely, effectively, and joyously with food allergies. You can find her at www.allergicgirl.com.

Sloane, can you please tell us what food allergies you manage and when you were diagnosed?

I have always been an allergic girl.  I have had food allergies since birth and I developed environmental allergies, eczema and asthma in early childhood.  I am also a social worker and writer.  In 2006, I became “Allergic Girl” and started the award-winning blog, Please Don’t Pass the Nuts, as a way to talk about food allergies.  I wanted to share my experience and connect with other people with food allergies; talk about what I was going through dining out, traveling, dating and working and the things I learned.

My work as a food allergy advocate—“Allergic Girl”—combines my commitment to helping people with my personal experience as someone with food allergies and my professional expertise as a social worker and writer.

What is your most recent experience with food allergen-related anaphylaxis? What were the circumstances and what did you learn from the experience?

My most recent anaphylactic experience was in 2009 after kissing a man I had been dating. Earlier that evening, we had gone over my allergens, my anaphylaxis action plan and where I kept my emergency medications. This was prescient. Later that evening, while kissing, I broke out in intense hives and started wheezing. He had eaten cashews earlier that day and, even though he had no proteins in his saliva, he had cashew nut dust in his beard. My reaction to that nut dust was swift and severe, but because we had discussed what we needed to do in an emergency, I were able to take care of the symptoms with his support and without further escalation.

The experience underscored that how vital is it to have and to know your anaphylaxis action plan, to have your emergency medications on hand in all circumstances and to communicate your needs clearly and concisely to others around you so they can support you.

I love your book, “Allergic Girl: Adventures in Living Well with Food Allergies” especially the chapters about dating. What can you suggest to teenage girls and boys about how do you say “No” at that age to a good night kiss from a date who ate your allergen?!

Thank you! No one ever talks about food allergies and dating so I devoted a whole chapter just on that topic.

Truly, the best defense, as they say, is a good offense. Don’t wait and watch while someone you want to kiss eats your allergen then goes in for a big smooch! As difficult as it may be, speak up about what your needs are in a clear and factual way to your potential kissing partner. The last thing they’d want to do is hurt you!

Extra credit homework: It really helps to practice having this conversation. So, enlist a safe friend or parent to practice how to talk to your date about food allergies, your anaphylaxis plan, where your medications are and what you need to smooch safely.

As kids grow, they become involved with activities where the parents are no longer involved. How can parents prepare their teens and preteens for handling food allergies while away from home? Are there some ‘absolutes’ in terms of “You Must Do This…”?

Teaching a child learn self-advocacy skills can never start too early; alternatively it’s also never too late! Ideally, once your child has been diagnosed with food allergies, engage them with age-appropriate advocacy skill sets. For example, n=knowing exactly what their allergens are, how to speak up about their food allergy needs to an appropriate adult, identifying allergens, how to read labels and that you have to do it every time and most essential: knowing their personal anaphylaxis action plan and having access to emergency medications at all times.

As every child is different, go where your child is; for example, a shy child will advocate differently than a bold one.

How can parents prepare a child with food allergies with the steps to take in an ‘emergency’?

Once your child has been diagnosed with food allergies and you receive an anaphylaxis action plan from your board certified allergist, think of it as the beginning of an ongoing process and conversation. Like a fire drill, run through the steps of that anaphylaxis action plan and equally important, engage your child about what an “emergency” means. Explore with your child the possible scenarios, solutions and outcomes as well as their feelings, fears and concerns. With younger children, this conversation can happen with play or through art; with middle school and high school children let them lead you to the emotional place they need to go.

And keep practicing. At different life stages, fears, concerns, worries as well as strengths and accomplishments change. Remember, an anaphylaxis action plan is a live document and what constitutes an emergency is living conversation.

What are the key tools/rules you use to keep yourself safe?

I find for myself, my readers and my coaching clients that the best tool to create a safe environment where ever you are is to take your food allergies seriously and manage risk. What does this mean? See a board-certified allergist. Ask a lot of questions of your allergist so you will fully understand your diagnosis. Fill your prescriptions and always carry them with you; also know your anaphylaxis action plan. Communicate your food allergy needs to those a round you so they can help and support you. And, be patient with yourself. There will be mistakes.  Being prepared will help.

Yep, that’s Morgan and Nicole with Sloane, whom we met in Chicago at last year’s FAAN conference in March 2012

Sloane and Morgan hit it off right away. It takes a food “allergic girl” to really understand a food “allergic boy”! They shared stories about managing food allergies in restaurants and school and more. It’s so wonderful for our kids to have great mentors like Sloane.

You’re probably also wondering…just how tall are Morgan and Nicole? Or is Sloane just a tiny little thing?! She is a ball of energy…and a tiny little thing next to the two of us!

If you have a child with life threatening food allergies, I’m sure you know how stressful daily living can be and how difficult it is to keep your marriage healthy and happy in the middle of all that stress. My husband, Bob, and I wrote about the Emotional Aspects of Food Allergy on Marriage in a previous blog post here.

If you’re beyond the point of staying in your marriage, my interview with Elizabeth Goldenberg is below. Elizabeth Goldenberg is the Founder and President of Onespot Allergy, a blog and retail site dedicated to food allergy safety and legal issues since 2009. She is also President of EpiCenter Medical Inc, co-founded in 2012 with Toronto Allergist Dr. Mark Greenwald, which focuses on access to epinephrine and anaphylaxis first aid training.

Hello Elizabeth. Not only are you a divorce attorney, but also the Founder of Onespot Allergy. Can you tell us a little information about both of these careers?
I’ve been a divorce lawyer for 20 years, and I’ve practiced as a sole practitioner for my entire career. I’m actually very well suited for that work and extremely effective at it. When my younger son with diagnosed with severe food allergies eight years ago, after I learned how to keep him safe, I had a business idea. I held onto that idea for several years, then finally gave myself permission to start Onespot Allergy. I know too many people who refused business opportunities because they were afraid to take a risk, and I didn’t want to be one of them. I now spend only 20% or my time practising law. In the new year, I may cut back my practice even more because I’ve partnered with a Toronto Allergist, and we’re launching two new allergy safety products.

What food allergies does your son have and how old is he?

I have two sons, Aaron and Jacob. Aaron has no food allergies, and Jacob is severely allergic to peanuts and tree nuts. Jacob is now ten years old, and he’s doing very well.

Not having ever experienced divorce, what issues are you seeing regarding children with food allergies when a divorce occurs?

I’ve represented 817 divorcing spouses (but who’s counting). I ask every parent during the intake interview if their children have any special needs. Given that 1 in 13 children has food allergies, I should have seen over 100 parents of children with food allergies. Until very recently, no one raised food allergies as a concern. I suspect they don’t think of food allergies as a special need, and now that you’ve caused me to reflect on this, I will revise my intake interview to include a more specific question.

I was consulted on only one case where a child’s anaphylactic food allergies were the main issue inhibiting access to the child by his father. In that case, the father wanted to take the child on extended trips and to family events, but he’d never learned how to choose or prepare safe food for his son, how to inform caterers and hosts of his son’s special dietary needs, how to avoid accidental exposure, or how to recognize anaphylaxis. He knew how to use an EpiPen, but without avoidance training and the ability to recognize anaphylaxis, that wasn’t satisfactory. During one anaphylactic episode that occurred while he was having access, he left the emergency department and drove his son home while the poor child was still unconscious. Understandably, the mother had deep concerns about his most recent request to travel with the child to attend a wedding and related events. She proposed to escort the child and attend to most of his needs while letting the child attend the events without her, but the father applied to Court, since he wanted his son to make the trip alone.

What can parents who are divorcing do better to take care of their food allergic child?

A certain amount of chaos develops upon separation, as each spouse adjusts to parenting alone. Sometimes the children’s needs aren’t taken care of as effectively, for example, notes from the school don’t get shown to both parents, homework or backpacks might be left at the other parent’s house when needed for school, and permission forms might not get signed. There’s just general confusion as the dust settles.

A child with food allergies can’t afford any mistakes to happen when it comes to his or her allergy management. As much attention as prior to separation needs to be given to his or her food safety, avoidance measures at home and at school, medical forms for the school, training of teachers to recognize and treat anaphylaxis, and having EpiPens always in reach. I recommend that children always wear two EpiPens or at least one in an EpiPen belt, rather than keeping them in a backpack or loose, since they can easily be left behind. That belt must stay on the child and move with the child between each parent’s home and school, since if it’s misplaced and a reaction occurs, there can be deadly consequences. Putting the allergic child’s needs first and staying completely focused on carrying them out during separation and divorce is the key.

In relation to custody issues do the courts view children with food allergies any differently than non-allergic children?

In my jurisdiction, custody and access decisions are based on the “best interests of the child.” You use the facts of a case to make arguments in support of your client’s position, and food allergies could definitely form part of your argument and influence a decision for custody or access to that child.

Having sole custody means that you have sole decision making power. Parents may not be able to make decisions together as joint custodial parents, if one parent is uneducated or negligent about food allergies. Access to a child can be completely unrestricted, have terms attached to it, or even be supervised. If a child were repeatedly exposed to his or her allergen by an access parent, you would want to attach terms to the Order. Examples would be providing that the child must only eat food supplied from the custodial parent’s home, that the child must be in the care of the access parent the entire time (no babysitters or only approved babysitters), that EpiPens must be kept with the child at all times, or that access occur only within a reasonable distance from a major medical center.

Have custody cases been decided based upon which parent understands food allergies better? Or which parent can provide a safer home?

Definitely. The case I described involving a trip for a family event was decided completely upon the father’s lack of understanding of food allergies, and his motion to the Court was unsuccessful. Every custody case is decided upon the child’s best interests, and an aspect of that is which parent can provide a safer home. The facts surrounding each parent’s food allergy management skills would be one factor to be considered.

How is ensuring that your child’s food allergies are properly managed by your ex-spouse different from going to the extreme and being accused of Parental Alienation Syndrome?

Typically for any serious allegation affecting custody or access, like allergy negligence or excessive drinking, the spouse would have documented concerns from prior to separation and there would be ongoing incidents after separation. I would ensure that anything you’re alleging is well documented, preferably by doctors, rather than relatives swearing supporting Affidavits. When there’s a clear trail like that to follow, rather than allegations arising only after separation, a parental alienation argument would not be successful. After so many years of divorce cases, I’ve never had a client accused of parental alienation, so it’s a stretch for me to imagine food allergy concerns being used to support that argument.

Is there anything else you would like to add?

I want to thank you for this opportunity to weave my legal experience into my work as an allergy advocate. I thought my career was taking a 180 degree turn from law when I started Onespot Allergy, and it’s lovely to contribute where law and allergy intersect, bringing my passion for allergy safety full circle into my work as a lawyer.

Thank you Elizabeth!

I have found it really helpful to be part of a local support group of food allergy families. Our local group is called MOSAIC – Mothers of Severely Allergic Infants and Children in Colorado Springs, Colorado. There’s a very active MOSAIC group in Denver, Colorado which has been meeting for several years. Our group in Colorado Springs is newer, but we continue to grow and to have great meetings.

It’s great to have other food allergic parents to talk to about schools, local grocery stores and local laws. In fact, our group had a paramedic come to one of our meetings and tell us what would occur should one of our children go into anaphylaxis.

A local allergist and I started the MOSAIC group here by contacting as many people as we knew who have food allergies in their family. Then, he continued to give the information to his patients as they were diagnosed. The group has continued to grow from there. Other allergists in town now participate in the group and give out flyers to their patients. We’ve had several discussions about accommodations for food allergies in school. We’ve also discussed Eosinophilic Esophagitis, nutrition for children with food allergies, the emotional aspects of food allergies – the list goes on and on!

If you are a member of a support group, please let me know and I’ll send you an AllergicChild brochure for FREE via email to pass out to your members. If there’s no support group in your area, maybe you should start one! Speak with your allergist about other families in your area who have food allergic children, and start from there.

Some support groups combine efforts to get legislation passed in their state. The picture above shows several Colorado support group leaders with their children watching while then Colorado Governor Ritter signs into law the COLORADO SCHOOL CHILDREN’S FOOD ALLERGY AND ANAPHYLAXIS MANAGEMENT ACT. Since meeting through the process of getting this legislation signed, the Colorado support group leaders meet once a year to discuss food allergy issues and initiatives in the state. It’s a great group of advocates, and lifelong friendships have transpired.

Our statewide support group leaders also help to run booths at the  FAAN (Food Allergy & Anaphylaxis Network) walk. There’s no end to what several concerned parents can do!

Food allergies comprise much more than just a physical component. The emotional aspects of managing a child’s food allergies challenge even the best of marriages. In this ongoing series about the Emotional Aspects of Food Allergies, this month’s article focuses on the difficulties and the joys of managing your child’s food allergies while supporting your marriage. My husband, Bob, will offer his experience, along with myself and how food allergies have given us opportunities in our marriage to support each other and our son.

Nicole: When our son, Morgan, was 18 months old and diagnosed with multiple food allergies I was a stay-at-home Mom with a 6 year old daughter in first grade. I walked out of the allergist’s office scared and confused and tried to explain to my husband everything that was shared with me about reading ingredient labels, administrating the EpiPen Jr. and purchasing a MedicAlert bracelet. I became the teacher and he became the student. The Internet in 1997 wasn’t populated with the information about food allergies the way it is now, and I’m sure I didn’t get all the information accurate because I was so shocked and saddened by Morgan’s diagnosis. I became the vicious mother bear looking out for my cub against all enemies, and woefully my husband was sometimes viewed as one of those opponents. I monitored what food allergens my husband ate and how well he cleaned up afterward. I used shocking statements like “He could die!” in order to really push the point. I hadn’t learned that my husband and I could unite with the purpose of finding a way to manage Morgan’s food allergies in our household.

Bob: When we first discovered Morgan’s food allergies, my wife was extremely protective, overly so as if I would risk Morgan’s life. I did not fully understand the entire breadth of what a food allergy was, because we were both learning.  Over time I learned how to properly read ingredient labels, I learned about cross contamination, cleaning plates and being very careful with food. I fully understood the ramifications however I am not sure my wife understood that “I got it”. She was amazing however, in getting the right information and I really would listen.  I even searched the Internet on my own to learn more. Regardless, I felt left out at a certain level because it always seemed she always knew more about food allergies than I did and somehow, anything I did was never good enough. That caused some emotional distance and upset.  It never deterred me however, from insuring Morgan stayed safe when we were together in Boy Scouts or on a “Guy” trip, or even camping in the high Rockies. I knew what he could eat and I knew how and when to use the EpiPen. While traveling I knew exactly what to ask restaurants…and when to leave and not take any chances. Over time, Nicole and I have become a united front and we share ideas together as to what works for us.

Nicole: As Morgan aged, I found that I was very apprehensive to let him experience “normal boy” activities. I was overly protective, and Bob and I would have disagreements as to what was safe for Morgan to attend. Birthday parties, sleepovers, Boy Scouts and camping trips consumed our conversations. It was so important to find a balance between being cavalier (making assumptions that everything would be fine) and being unwilling to allow Morgan to attend out of fear.

It was necessary to become prepared by finding out what food would be served, who would be trained on the EpiPen, and how to manage food allergies by a campfire! One teenage boy at the last FAAN Teen Summit said something like, “If I listened to my Dad, I’d be dead today. That’s why I always listen to my Mom.” I want to present a united front about food allergies to Morgan, and it requires that both Bob and I be educated and able to take care of him – in preparation for activities and in case of emergency.

Bob:  I take our kids camping a lot. My wife, Nicole considers camping a Hyatt Regency without room service. So with that being said, I am the parent that does all the outdoor, high adventure fun! On camping trips, we always bring at least 2 EpiPens and Benadryl as a precautionary measure. Six years ago, we were camping near Lake City, CO at about 11,000 feet, when after a full day of fishing, I showed the kids how to cook trout the right way over a campfire. Upon taking a bite of the trout Morgan started to daze off with a glassy eyed look, my daughter Michaela got the Benadryl but to no avail as to any change.  Morgan was starting a severe allergic reaction and complained about having trouble breathing,  even though I knew he had tested negative for fish at the allergist’s office. I knew something was severely wrong as he was quiet so I took his EpiPen and punched it in his upper right thigh…after a yell or two, he then threw up the fish and I got him into the Landcruiser with his sister in the back with him. We raced down a very steep and long 4 wheel drive trail to the Lake City, Colorado Hospital. Thankfully he was fine after the one EpiPen, and we continued our camping for the rest of the week.

My adrenaline was pumping through the whole thing and I managed it as if I had been doing this every day.  I did not lose it till later; realizing just how close having a child with severe food allergies is to death.  Knowing I had the training with the EpiPen, the knowledge it might need to be administered again, and being an avid outdoorsman trained in first aid, I know all helped to keep Morgan safe and alive. We found out through a subsequent allergy test that Morgan is allergic to fish! Needless to say, we found lots of other things to do other than fishing when we go camping.

I’m so grateful that I learned the details about food allergies and what to do to keep Morgan safe in daily activities and also in case of an emergency. Both my wife and I are educated about food allergies; however in many families I have learned, if I just relied on her to take care of things, this situation could have been disastrous.

Nicole: I was home when I received Bob’s call from the Lake City hospital telling me all that transpired. It was really difficult for me to allow them to continue camping, but after talking with Morgan who told me, “I’m fine and I want to stay camping,” I knew there was no other choice but to trust Bob to watch for a biphasic reaction – which thankfully never occurred. Bob did stay up most of the night watching for that reaction after administering Prednisone to Morgan. What a Dad!

When Morgan was 14 years old, he went to the Boy Scout National Jamboree with 42,000 other Boy Scouts in Virginia. Once again, I was challenged to let go and allow him to experience high adventure fun! I’ve learned to view these types of opportunities with an attitude of “how can Morgan participate in this activity?” instead of an immediate “No, you can’t go!” I learned to do that from my husband, who has that positive attitude. Sometimes it is exhausting in trying to control all the aspects of a child’s life to ensure safety with food allergies. And out of that exhaustion I am more apt to decline opportunities. That’s where it’s great to have a spouse who is willing to take on an adventure like this. Bob was willing to travel out to Virginia and rent a hotel with a small kitchen. He shopped and then prepared all of Morgan’s food for the 10 days of the Jamboree. Bob also got to participate in the Jamboree as an adult Scoutmaster, which was a great experience too. Morgan had the time of his life at this event, which made all the work worthwhile!

Had I not learned how to let go and trust my husband, Morgan would have never had this opportunity.

Bob:  As Nicole mentioned earlier, my son Morgan and I attended the 2010 National Boy Scout Jamboree at Fort AP Hill, in Virginia. Before going, I was in contact with the Food Director of the event and we discuss various issues that may arise. He had assured me that I would be able to store safe food for Morgan in their central refrigerator unit they use for the Jamboree adult leadership. He also conveyed to me that all I had to do was call him upon my arrival at Fort AP Hill, in Virginia. I researched for a Condo-hotel that had a full kitchen as I knew I was going to cook Morgan meals for 10 days. I also knew I needed a way to protect the cooked food from cross contamination, knowing it would be stored with others, and to mark it with his name and unit number. I made a complete menu before I left which included breakfast, lunch, dinner and snacks.  Upon my arrival in Virginia, I purchased all the food, Ziploc bags with a white label to mark his name and unit number, ice and purchased a large 30 gallon cooler with wheels, knowing it would take me an hour’s drive to the Jamboree event and an hour to the central refrigeration area. It was 90 degrees outside. I labeled all the bags with a permanent marker, and froze what I knew were his dinners and breakfast. I packed 5 days worth of meals which is all that would fit in a 30 gallon cooler with ice, and took off to the Jamboree.

Imagine my surprise when I arrived at the central refrigeration area and they told me, they had no idea what I was talking about. I was told I could not use their facility as it was against Virginia health laws to place outside food in their facility from a non-certified vendor. I tried to keep my cool, explaining the issues once again that Morgan had to eat safe food and he was arriving tomorrow and was scheduled to be there for 10 days. I was rebuffed once more, this time by the director of food services, with an apology.

Not one to give up easy, I went to the Scoutmasters’ area and explained the situation, and once again was told I needed approval from the Food Director. Imagine the panic I felt, knowing Morgan had to eat safe food, and I had no way to provide him with such. I was preparing to buy a refrigerator. I then called Jamboree Headquarters and ask to speak with the event quarter master, and discovered they had special refrigerator units at each of the campsites that held 3 days of food for 2,000 people. I took off to the campsite that Morgan would be at, and found these huge military walk in refrigerator units in the middle of the woods. I unloaded his first 5 days of food into the unit. As a Scoutmaster, I made friends with the on-site camp quartermaster and explained Morgan’s food allergies in detail and why this was important. I also explained to him that Morgan would know what he was eating and gave the quartermaster a copy of his menus. I also shared with him about Morgan’s scouting achievements. He was very interested in helping.

Even with a 90 degree temperature and 90 percent humidity, I was beyond relief.  I sat down on an old tree stump at the camp and was emotionally spent, but knowing now in my heart that Morgan would be safe and would now be able to have the time of his life, made all the difference in the world. Also knowing I would not give up with a couple of “No’s” along with dealing with a few stubborn people, told me any father dealing with food allergies may face the very same situations and they too need to stand up for the well being of their child. The only way we can do this is to really take the time to understand food allergies and how it impacts our kids, our wife and ourselves. With this knowledge you too will know what to do in any situation and more importantly, why!

Nicole: We talked as a family what it would take for Morgan to attend the Jamboree safely, and what kind of financial commitments we were willing to take on for Bob to attend also to ensure Morgan’s safety. There can be a lot of financial stresses on a marriage with food allergies! And not just the cost of medication and doctor appointments – it’s also the cost of a parent attending events such as this to ensure safety.

It certainly would have caused a lot of embarrassment if I, as Mom, had been the one carting in the food for Morgan. It was okay that it was Dad, and in fact, Bob made so many good looking and tasting meals that other boys lined up to eat any leftovers Morgan had! I was so grateful that in the middle of all the turmoil that Bob was able to resolve any issue that came forward.

We’ve found that it’s really important for parents to present a united front when it comes to any issue – and not just those surrounding food allergies. I’ve had to give up a little of my over-active worrying; and Bob has taken on many of the responsibilities of ensuring safety for Morgan to be able to participate in “normal boy” activities. Together our marriage has grown in a united front to provide as much of a normal childhood for Morgan.

This month’s main article will touch many hearts. Dee Benson, mom to Laura, lost her beautiful 18 year old daughter to peanut-induced anaphylaxis in 2004. She’s never told Laura’s story and wanted to tell all of you about her. It’s heart-wrenching to realize that we really do deal with life and death when managing food allergies.

Dee, tell us about your daughter Laura. What did she like? What were her dreams for the future?

Thanks Nicole for the opportunity to tell Laura’s story.  Laura, like most teenagers, loved being with her friends.  She loved God and was on the worship team at her church.  She had a passion for performing and took every opportunity to sing and dance on stage.  Laura never shied from the spotlight and didn’t mind standing out from the crowd.  Most of her wardrobe consisted of neon colors and clothing she had “improved” with scissors and puffy paint. But above all, Laura cared deeply for people and really invested herself in them. Whether it was staying up all night to make presents for her friends just to show she cared or donating her hair to Locks of Love or pouring her energy into promoting school music programs, she tried to make her little corner of the world a kinder and more beautiful place.

What was your daughter Laura allergic to? How old was she when you found out about her allergies?

Laura had many allergies.  She was allergic to trees and grasses, dogs, cats, dust, and peanuts.  Her peanut allergy was by far the most severe.  When Laura began eating solid foods, my mother gave her part of a peanut butter and honey sandwich, and within minutes her face was hugely swollen.  Later, before Laura turned 2, she had to be rushed to the hospital because she had trouble breathing.  It was at this time that she was also diagnosed with Asthma.

Had she ever eaten peanuts before? Did she experience an allergic reaction then?

Laura had infrequently come into contact with a few peanut products (candy, with peanuts or peanut butter) over the years.  Generally, she would spit them out because she was aware of her allergy and also because she just didn’t like the taste of peanuts.  On those occasions, she would take her inhaler and call me.  I would bring her Benadryl and in a while she would be better.

Did Laura understand about her peanut allergies? Did she carry an EpiPen?

She understood that she had a severe allergy to peanuts, and she took it very seriously.  I did leave an EpiPen with her middle school office, which was never used, but Laura didn’t normally carry an EpiPen.

Tell us about the camp that Laura attended. Had she been there before?

The high school group at her church did a Spring Break service project every year. They went to a camp in Northern California to prepare the camp for summer. They painted and cleaned and had a great time.  Laura had been at this particular camp before and was looking forward to it.

What happened on the day Laura died?

At lunch, one of the camp staff had prepared rice krispie treats with peanut butter, but nobody labeled the snack or informed the kids of the ingredients.  Laura loved rice krispie treats, and it never occurred to her that anyone would make them with peanut butter.  After she ate it, she went to one of her counselors and told him that she believed there were peanuts in the snack and that she was having an allergic reaction.  The counselor told her to go back to her room and lay down for a while.

(Just as a precaution, on the Friday before leaving for camp, I called Laura’s doctor’s office to see if I could get Laura in to renew her EpiPen, which had expired quite a while before this.  The doctor only worked half days on Friday and we were not able to get an appointment, therefore, Laura did not have an EpiPen with her at camp.  She did have her inhaler and I am sure she took that, but she was not given any additional medicine such as Benadryl.)

When she got worse, she went to her counselors again, and that’s when they realized that she needed medical attention.  They called the ambulance, which was several miles away.  Laura died on the way to the hospital.

Is there anything you would have done differently?

Aside from not letting her go at all, I would have required a nurse and EpiPens be available on site.  Laura had filled out her own application for the camp, which stated that she had a peanut allergy (as well as other allergies) and asthma, so the church and the camp were given information on Laura’s condition.

Has the camp done anything differently since Laura’s death in 2004?

I haven’t contacted the camp, but I hope that they would now review all allergies listed on campers’ application forms.

What advice can you offer to other parents of children with food allergies?

Be prepared for emergencies, and enjoy every minute you have with your children.

Thanks,

Dee

Nicole’s Comments: Thank you Dee for sharing this incredibly tragic story. I so appreciate you sharing what happened to your family because it helps those of managing food allergies to learn from you. Dee and I met recently and talked about Laura. Like many teens and children with food allergies,  Laura had never experienced anaphylaxis before this episode. It reminds us all that past allergic reactions are no indicator of future ones and potential severity. From Dee’s comments about what she would have done differently, I’m sure many of us can relate. In the 8 years since Laura has died, there is more education and awareness in many camps, but make sure to have your child’s Health Care Plan/Food Allergy Action Plan in writing; have EpiPens travel with your child always and as Dee said, “enjoy every minute you have with your children.”

Food allergies comprise much more than just a physical component. The emotional aspects of food allergies continue to rear up with each stage of development in a child’s life. Dealing with extended family members who may not “get it” can create strained relationships. With those family members who do understand, it’s so wonderful to have another advocate on your side! This month, my friend, Jenny Kales, of The Nut-Free Mom Blog and I are discussing our experience with our extended family and food allergies.

Nicole: When my son, Morgan, was diagnosed with food allergies at 18 months old (after having two severe reactions – one to touching peanuts, and one to his MMR shot) I was convinced that no one but me could take care of him! Yet, I quickly learned that my husband needed all the information about Morgan’s food allergies and how to operate the EpiPen. I also learned that our extended families needed to understand the change in food habits that would be required for Morgan to be able to attend family gatherings. My father immediately said that I was overdramatizing my son’s allergies and that I’d make him into an anxiety-ridden child! He began sending me research reports about how it would be good for Morgan to be around cats and dogs (two more of his severe allergens). My father had suffered from asthma as a child, and his own mother had babied him into his adult years. I began to understand where his comments were sourced, yet I didn’t give up on the need for my son to NOT ever be around his food allergens or pets. I continued to try to educate my father about food allergies and what would be necessary for him to do to be around Morgan.

Jenny: One thing I’ve found, both in my own experience, and from the experiences that people share with me, is that some extended family members have the philosophy that  kids can somehow “tough out” a food allergy or that a small amount of a food allergen helps cure the allergy.  You are going to find all sorts of opinions that conflict with what you need to keep your child protected.  I remember one Thanksgiving (at my in-laws) where one of the kids at the table wouldn’t eat the dinner, but wanted a peanut butter granola bar instead. Everyone asked me if that was “OK.” The child in question was sitting right next to my daughter and while I don’t believe that every food allergy risk can be eradicated in life, I believed that my daughter had a right to a comfortable Thanksgiving meal and I said “no, that’s not a good idea.” That was just one incident where I was on the spot and felt that others were humoring me;  they didn’t really believe that food can be a threat to a child.  Over the years, much of this has improved but I still feel that I’m being humored at times, especially when it comes to restaurants or when I don’t allow my daughter to eat baked goods from a bakery. There will always be family members who think you’re limiting your kids unnecessarily.  I’d love it if my daughter could have the freedom to eat whatever she wants but the reality is that she can’t or her health is at risk. You need to develop a thick skin and also a sense of what your bottom line is, i.e. making good choices for your child’s health.

Nicole: Oh those holiday meals! I can remember one Christmas when Morgan was not yet 5 years old and my husband’s entire family had a get together. It was three families, plus my mother-in-law, which totaled 6 kids and 7 adults. I had asked family members to please not bring any of his food allergens to the Christmas Eve dinner, (which at the time were peanuts, tree nuts and shellfish.) The dinner was not at our house. My mother-in-law just couldn’t live without her crab puffs on Christmas Eve, so she said she made them with artificial crab meat! I was very hurt, and couldn’t understand why she wasn’t able to forego her crab puffs just that year. I was still concerned about cross contamination in the manufacturing process, even if it was artificial crab meat! Then a neighbor showed up with nut covered brownies for everyone to share, and while I requested for my husband to deal with this, they still got eaten in our presence. We had prepared Morgan’s food separately, yet we still worried about all the food allergens in the house, and I didn’t feel comfortable causing a scene, packing up and leaving for home. It wasn’t a pleasant Christmas Eve experience for me. From that year on we have always had Christmas dinner at our house where we can monitor and prepare all the foods. It’s a small price to pay for peace of mind. The good news is that now, some 10+ years later, my in-laws are very concerned about food allergies and Morgan’s safety. At my nephew’s high school graduation party last May, I received a phone call from my brother-in-law ensuring that what he was preparing was not going to cause any issues. He knew that Morgan would be bringing his own food, but he wanted to ensure Morgan’s safety to the utmost! Nothing like education and awareness…and patience on our part!!

How do you deal with the preparation of holiday meals? What about location of the festivities?

Jenny: I like to be able to cook for the holiday meals as much as possible and by now, everyone understands this and welcomes it because fortunately, they like my cooking! J When we do eat at someone else’s home, I have a hand in the ingredients and cooking as well. I always bring dessert, too. I have to say I have a very short list of people that I think truly understand how to cook for my daughter. As the years have progressed, I do think that people in my family have gotten used to dealing with food allergies at holiday meals. However, since we are so careful and we have not had a lot of repeat reactions in recent years, sometimes others might think that the risk is somehow lower. They don’t realize how much effort goes into preventing a reaction. When it comes to holiday parties that are not hosted by close family members, all bets are off. We usually just bring something to the party that we know my daughter can eat and sometimes she might eat before or after. It’s really important to keep reiterating to extended family members (or friends) that we don’t think you have an “unclean” kitchen or are deliberately trying to harm anyone.  It’s truly difficult to explain cross contact to people. Another thing is that food is extremely tied to emotion and tradition, and this especially true at the holidays. So I try to understand that not everyone will want to or be able to provide a complete menu that is OK for my daughter’s allergies. We will work around it as best we can because we also try to emphasize that family traditions are not only about food, but about spending time together and other non-food activities. However, if we’re not sure about a food, my daughter doesn’t eat it. That rule stays firm wherever we go.

Nicole: It sounds like you have more comfort with others cooking for your daughter than we have for others to prepare foods for our son. I’m not saying that’s a bad thing at all! I think that’s probably a learned thing for your daughter. Morgan is really uncomfortable with anyone cooking for him in our extended family – and I know he learned that from my husband and me. He’s especially concerned with any foods that he might be allergic to being served because of the chance of a spoon or spatula being used in one of his safe foods. He’s grown accustomed to showing up places with a cooler full of safe foods for himself. There’s several different ways to deal with a child’s food allergies in family gatherings. The best way is what brings safety and security for your child!

Jenny: I am actually really cautious about letting others cook for my daughter and I certainly want everyone reading this to be cautious as well. It’s so important. Let me clarify—when I say a short list of people who we trust, I mean maybe two people. And even for those people, we go over all the steps, cleaning, cross-contact, etc.  Usually I’ve got a hand in at least some of the cooking, so I see what’s going on in the kitchen. These “trusted” people are also not likely to have the allergens in their homes in the first place. For example, my sister (my daughter’s aunt) never buys peanut butter any more.

When I say that we work around it, I mean that we will just bring our child her own meal if there is any risk involved in eating the food. Usually people are very accommodating to us, but ethnic traditions play a role. For instance, one side of my husband’s family is Greek. Nearly every Greek cookie or cake either contains tree nuts or came into contact with tree nuts; baklava is one example. It’s nearly impossible to eliminate these desserts off of a celebration or holiday menu, because of the strong cultural ties. Sometimes we might go to an event but bring Alex a separate meal or side dishes, etc.  You can’t be shy about refusing potentially unsafe foods since avoidance is our best weapon against reactions.  We’ve probably offended some good cooks along the way without meaning to. Certain cultures equate food with love and that is especially true for Mediterranean cultures!

Nicole: Thanks Jenny for sharing your experience with extended families and food allergies. There’s many ways to enjoy the holidays – and enjoyment is the key!

In the recent CNN article, Food allergies make kids a target of bullies, statistics were given that about 35% of children over the age of 5 with food allergies have been bullied, teased or harassed. There has been a lot of press on bullying recently, and this particular research published in the Annals of Allergy, Asthma and Immunology brought it closer to home for us.

Our school district defines Bullying in their Policy as follows:  Bullying is defined as any written or verbal expression, physical act or gesture, or a pattern thereof, that is intended to cause distress upon one or more persons in the school environment. Direct bullying can be physical in nature, such as hitting, kicking, pushing, or choking. Or, it can be verbal, such as name-calling, threatening, teasing, etc. Indirect bullying is subtle and may be difficult to detect, such as social isolation, intentional exclusion, making faces, staring, obscene gestures, manipulating friendships, etc. Bullying may include an imbalance of power between the bully and the victim.

Our son was thankfully bullied only a few times in elementary school, and not at all in middle school or high school. I’m sure it has helped that we’ve lived in the same community for 17 years, so Morgan has gone to school with the same children since kindergarten. These kids have been aware of his food allergies for years, and most have been very caring and compassionate about bringing in safe foods.

I feel it’s important to share the specifics of the bullying instances to help other parents be aware what our school district felt was inappropriate behavior that needed to be immediately stopped. The first instance occurred in 1^st grade when a little boy chased Morgan around the playground after lunch saying he had a peanut butter cracker and “I’m going to kill you.” Morgan didn’t even take the child seriously because he knew the boy was emotionally immature, and he wasn’t sure the boy even had any food in his hand. A friend took Morgan to the playground monitor to report the other child’s behavior! The playground monitor immediately sent the bullying boy to the office whereupon the Principal called the parents and the child was suspended for the rest of the school day. This impressed upon everyone the seriousness of food allergies and that food should never be used as a weapon. Since Morgan was the first child in the school to have such severe and multiple food allergies, this set the tone for the rest of the families. The good news is that this little boy (who’s now a big boy!) is now very good friends with Morgan. They put this issue aside, and our families have moved on to become good friends too. They are now some of the biggest advocates for keeping Morgan safe in their home!

The second instance of bullying occurred when a child tried the same behavior on the playground, however because of a language barrier his parents didn’t understand the implications. He wasn’t suspended as far as I know. He too had some emotional issues. Later in the school year, his parents brought in sesame snacks to celebrate the Chinese New Year and had to once again be reminded that this was a severe allergy of Morgan’s and the snacks had to be sent home. This boy ended up in my husband’s Cub Scout Den, so the family got a close up lesson about food allergies. We all ended up being friends in the end!

The last instance occurred in 4^th grade when a boy sat at the Peanut-Free lunch table at school with a Butterfinger candy bar and wouldn’t move. Morgan tried to get the boy to move to no avail. He then enlisted the Principal to assist him, because she happened to be in the cafeteria at the time. The Principal took the boy to the office and contacted his father. Morgan came home to tell my husband and me about the story, and my husband called the boy’s father to discuss it since the child was in his Cub Scout Den also! The father was furious that his child was being singled out for this behavior and thought that nothing inappropriate had been done! Thankfully, the school had already warned the child that sitting at the Peanut-Free Zone table with non-safe foods wouldn’t be tolerated in the future and it never occurred again.

Since these instances, Morgan has never been bullied again. Morgan is forthright about his allergies when the information would be helpful for others to know. It helps too that he’s very tall and towers over most of his classmates and older students! Regardless, the Principal in each of the situations acted swiftly and decisively which set the tone that bullying behavior with food would never be tolerated.

I believe that most school districts have a bullying policy in place. Read through your school district’s policy! It helps to see what they determine to be inappropriate behavior.

If inappropriate teasing, harassment or bullying does occur, encourage your child to talk with an adult immediately. We’ve continued to have conversations with Morgan about the potential for nasty comments from his classmates, just to keep us in the loop about any issues. He’s been very willing to share with others about his food allergies – not to be called ‘Allergy Boy’ but rather to be a self-advocate to ensure his safety. There’s a fine line between sharing the appropriate information and setting oneself up for teasing. A good school policy helps to support this balance.

Remember when your child was first diagnosed with a severe, life threatening food allergy? For me, I was in denial for months before I could truly accept what a life-altering event it was. I was beyond scared, and I wasn’t sure I was up for the task.

I felt overwhelmed at the road that lay before me to practice vigilance to ensure my son would never come into contact with his allergens. I had a very difficult time trusting that even my husband could properly take care of our son.

There have been times when I needed not only a friend to talk to, but someone who truly understands food allergies and all the emotional issues that it entails. I see it as a strength when we reach out for help, and admit that we are in need of assistance.

If you are feeling overly anxious and can’t quite find a ‘new normal’ after your child has been diagnosed, you might need some help. If your child is having a difficult time at school learning how to self-advocate, or feeling helpless – then you might want to reach out for some assistance for him/her.

Learning how to manage food allergies is a one day at a time thing for us. As Morgan has grown, he has been able to take on more of the responsibility. That doesn’t mean the transitions are easy though! My husband and I are careful to monitor Morgan’s and our emotional health along with physical health. The last thing we wanted was for Morgan’s food allergies to be a stomping ground for rebellion. It’s normal for a teenager to demand independence, but do so with an EpiPen in your pocket!

We certainly haven’t done everything right through the years, and there have been times when my husband has reminded me that I need to let go more and allow Morgan more space. And I have asked my husband to be more detail oriented with label reading. Communication is key in the family unit, and sometimes that requires an outside source to help the process!