Bullying And Food Allergy

It is interesting that the criminal charges laid this week in Kentucky comes just after an article on bullying by ABC. The article featured a case of bullying where a girl had an apparent reaction to the smell of a peanut butter cup that was opened in her vicinity. (The prevailing wisdom is that it takes an airborne particle to cause an 'odor reaction', though the odor of a peanut has been shown to cause a psychosomatic response.)

The article noted that the incidence of bullying is rising, though bullying is nothing new. In my school days I do not recall ever encountering food allergy, though bullying and intimidation were just something you dealt with. When most people think of bullying they conjure up images of physical conflict, though (as noted in the article) verbal abuse can be more serious.

Allergic Living recently wrote an article about children with food allergy developing anxiety. I surmise that bullying can help foster that anxiety.

Here are two cases in point. The VanEssendelft children in the ABC report, both of whom have peanut allergy, have been subjected to stressful situations:

• Sarah, 14, grew up with a group of girls that "attended birthday parties and play dates and had always kept a careful eye out for peanuts. Yet, still, the girls tried to test her allergy." Recently, however, these girls did not believe that her reaction to the odor of the peanut butter cup was real, so they decided to make a statement in the lunchroom by organizing a 'peanut party'. Thankfully a friend tipped Sarah off about the plan, telling her that the girls were bringing "everything peanut they can find, to watch your face blow up".

• David, 13, recently had a "kid in the locker room say, 'I'm going to put peanut butter on the ball and I'm going to serve it to you so you have to set it,'". Apparently peanut jokes are common from this kid and he has said he wants to see David use his auto-injector.

Kids can be harsh. Clearly they do not appreciate the risks associated with severe food allergy and anaphylaxis.

The article also quoted Anne Munoz Furlong, founder and CEO of FAAN. "Whenever we talk about kids with food allergies in schools, their friends are a huge influence and can keep them safe. We have very often had teenagers tell us that their friends are their body guards, their friends are their eyes and ears."

The teen years are hard enough. A food allergy adds another level of complexity. Though it would be difficult to go through school facing these issues, I would also suspect that a certain resiliency, responsibility and strength of character could develop as a result.

While others can certainly provide support and assistance, the allergic individual is ultimately the one responsible for managing their own allergy. Best wishes to all of the Sarahs and Davids out there.

Allergic Barbie

Our 3 year old daughter is severely allergic to peanuts and, to a lesser extent is allergic to egg. One of the challenges of managing an allergy in a young child is to ensure that she knows that peanuts can 'make her sick' while not causing her to have overly heightened anxiety.

Recently I tried to get the point across by telling her that her Barbie was allergic to peanuts and eggs. I wanted her to understand that her 'allergic Barbie' could do all the things her other Barbies could do as long as she did not eat peanuts or eggs. Not surprisingly our daughter has latched onto the 'allergic Barbie' and become somewhat protective.

Tonight she took the game to a whole new level.

Apparently at 6:25 PM this evening 'Allergic Barbie' ate a peanut. Our daughter surprised me by playing out an entire emergency situation. She did not panic and dealt with emergency swiftly. First she took down Barbie's pants and used a needle in her doctor's kit to give Barbie an 'EpiPen'. She then used her Elmo phone to call the 'ambuhlance' and had Mommy open the front door to let the paramedics in. The paramedics helped make Barbie safe and everybody went to the 'hostibal' together.

I was very impressed. Since our daughter is three, she would not likely have full comprehension of the seriousness of an emergency. She simply knows that Barbie is 'sick' after eating a peanut, and she wants to help make her better. That being said, the emergency game clearly demonstrates that she knows to act fast, use an auto-injector and call an ambulance. Understanding the basics of an allergy emergency will make her safer.

In this month's issue of Allergic Living there is an article about children developing heightened anxiety as a result of managing their severe food allergy. The Barbie games we are playing in our home seem to be a healthy way to deal with a serious health issue without shocking our daughter.

It will be interesting to see how this develops over time.

Fear, Frustration and Hope

Today I came across a great article on CNN. The article is written by the mother of a young boy named Teddy who has anaphylaxis, to peanut, egg, dairy and wheat. Unless you have a experience managing severe food allergy, you would not appreciate how difficult it would be to manage the allergy and keep Teddy safe. Teddy's exclusion list would dwarf Madeleine's, which is just egg and peanut.

I was struck at how well Teddy's mother articulated the fears, concerns and frustrations that parents face when they have a child with severe food allergy.

In the midst of managing a tough dietary regimen, Teddy's mother also faces the ignorance and fears of others. It is important to understand that most people just do not understand food allergy. They cannot comprehend that the perfectly healthy child in front of them goes into a life threatening reaction within seconds upon contacting the allergen.

An example of this is when people say to Teddy's mother "Oh, a little bite of cake won't hurt him" and "Why do you need to read the label -- I'm sure this is OK." If you have a child with food allergy you have almost certainly encountered this. It is frustrating, but your role as a parent protecting a food allergic child is to treat that as an opportunity to educate vs a reason to become frustrated.

Another classic example from Teddy's mother involved air travel. "When we fly, we have to fill out paperwork for a peanut-free flight, since even airborne peanut particles can pose a risk. Once a flight attendant slipped up on a connecting flight and began passing out peanuts. I asked her to please keep them away from our rows. "Oh? Is the peanut allergy still on board?" she asked." Though it is frustrating to have your child reduced to a label or stigma, this is another opportunity to spread awareness. It might he helpful to talk calmly to the flight attendant after the flight about her choice of language. Getting angry during the flight would just make you look like a 'peanut parent' who is totally overreacting.

School of course is a fear for all of us and Teddy's mother shares our concern that Teddy will "most likely have a segregated seat at lunch, and while that potential exclusion saddens (his mother), the growing number of children with allergies would seem to indicate he'll have some company in the lunchroom."

I chose to highlight this article as it covers many of the major concerns and fears encountered by parents if children with severe food allergy. We face these psychological challenges in addition to managing complex 'dietary logistics'.

Another element of the psychology of childhood food allergy is hope.

Teddy's mother says, "we still have hopes that Teddy will outgrow some of his allergies. After all, he's only 3½. If he can outgrow only one allergy, I hope it is cow's milk. He'd be able to eat the lengthy list of foods whose only allergen is caramel coloring. And I'd like to be able to drink a glass of milk and kiss him on the cheek without him getting a hive."

I've had this sample mental conversation myself many times.

Though we all have become adept at managing severe food allergy, the truth is that everyday we hope that it will somehow vanish in the same mysterious way that it appeared.

No! No! Not The Peanut Cookie!

On several occasions I have blogged about the fact that it is impossible to completely avoid an allergen. If you have a peanut allergy it is likely that at some point you will inadvertently encounter surprise peanut protein, perhaps just when you least expect it. It is critical to be prepared for an emergency response should that be required.

Today we experienced this first hand

We were at a Vancouver café and my wife ordered an oatmeal cookie to go with her latté. (... how Vancouver is that?). I was watching as the café owner reached for the cookie and I said, "No! No! Not that cookie. We can't have peanuts!" I was slightly amused at the 'peanut conditioning' I have undergone. though I am not even allergic to peanut, (our daughter has the peanut allergy), I often react with an urgency that should be reserved for those who are actually allergic! It is very interesting.

The scare today was that I thought that the café owner had reached for the peanut cookies, and not the oatmeal cookies. When I looked closer I realized that he did indeed pick up an oatmeal cookie but their cookie label signs were in front of the wrong cookies. The peanut cookies were labeled as oatmeal and vice versa.

Let this be a lesson that even when you carefully read ingredients, signs, etc. you could still pick up a mislabeled food item and unknowingly consume an allergen.

This is just a fact of life for those living with food allergy. Though it is important practice safety and avoidance, it is critical that you carry an epinephrine auto-injector, such as an EpiPen or TwinJect at all times.

You cannot be too prepared and you just never know when anaphylaxis might be triggered.

Book Review: Mommy, Is This Safe To Eat?

I was recently contacted by Christina Black, author of two books for peanut allergic children and their parents. Entitled 'Mommy, Is This Safe To Eat' and 'Starting School With A Food Allergy', the books are intended to help young children understand how to stay safe while still having fun.

I decided that the best way to review these books was to read them to my 2 1/2 year old peanut allergic daughter. She has made great progress in understanding her allergy. Every time she sees peanuts, peanut butter or potentially unsafe cookies she says: 'No peanuts for me. Peanuts make me sick'.

That being said, it is very difficult for her to be aware of peanuts hidden in other foods. The photos in these books, such as those depicting potentially unsafe muffins or crackers, were very effective. She was confused at times, and the point was clearly made that Mommy and Daddy to help her determine if a food is safe.

The M&M's were particularly confusing since Smarties are safe, at least here in Canada. She pointed and shouted, "Smarties!" only to have Daddy tell her that they were not Smarties and that she should only eat things that look like Smarties if Daddy or Mommy say it's safe.

The books also capture food allergy safety from a child's perspective. The allergy learning process can be confusing and frustrating, and the books deal with some of the most challenging scenarios: grocery shopping , forgoing cookies or snacks in social situations and dealing with concerns that a peanut allergy is the antidote to fun.

In future titles I would suggest a more engaging narrative format to bring the child deeper into the book. Children love to follow a well formed story or theme. Another idea would be to have something, perhaps a peanut, that repeats on each page. Kids enjoy hunting for these items when they are hidden throughout the book.

Though there are many websites, such as Safe4Kids, with content related to food allergy in the classroom, sometimes it also helps to have a printed book with pictures. These books could serve as a useful teaching aid for all children, not just those with allergies, as they learn about food allergy safety.

Peanut Parfait

This week we were out to dinner. While eating a delicious strawberry parfait I crunched into something that has become foreign to me … a peanut! Ironically, I had just finished saying how much our daughter would enjoy the parfait. I found it interesting to experience first-hand the shock that an allergic person would feel when finding a surprise peanut. My first reaction was one of fear. It was as if I was allergic myself. I felt very strange and I could no longer eat the parfait.

I have not had a peanut in about six months. The taste is now unsettling and for obvious reasons no longer welcome. While I can still enjoy an omelet while traveling on business (despite our daughter's egg allergy), I no longer have a desire to eat peanuts. I was surprised that I had such a strong reaction. It is funny how the mind works.

Allergic To Raw Poultry

This week I had food poisoning. It is interesting how many small parallels there are between food poisoning and food allergy.

On Sunday I came down with a severe fever. It was out of nowhere and for almost 2 days I had a fever of 103 and could barely open my eyes due to the headaches. I recognized the symptoms as food poisoning based on prior experience.

It was surprisingly easy to locate the likely source of the food poisoning. Based on a review of a Canadian Food Inspection Agency site I isolated the likely culprit: campylobacter. This is a bacteria related illness that typically comes from raw poultry. The symptoms were exactly aligned with what I experienced.

The only thing I ate that my wife did not eat all weekend was a BBQ burger at an outdoor block party. I do recall that the young man working the grill had ground chicken burgers on one grill and burgers on the other. My guess is that he had two grills with one set of tongs.

Though this is not even close in severity to a lifelong food allergy, one interesting parallel will be the close attention I pay in future to how the block party burgers are being flipped. There will be an element of fear, even if small, and that is something that the food allergic are forced to deal with at every meal. In addition, similar to an allergy the serious reaction is attributed to a microscopic irritant whose source cannot be identified with 100% accuracy.

I am feeling much better on Day 5 of my ordeal but I am not out of the woods yet. It has been interesting to see the allergy parallels this time around.

Peanut Butter Family

Today my parents tagged along for our daughter's weekly gymnastics class. The instructors have been great with the allergy and we've not had any serious issues to date.

This morning a new set of classes began and, per standard practice, we made sure that the other children, parents and nannies knew of our daughter's allergy. The instructors made an announcement and as always, the class was without incident.

After class our daughter made her way out to the foyer to get her coat and the Peanut Butter Family decided it was snack time. Parents, kids and Grandma all had peanut butter sandwiches and when Grandma caught our nanny's eye she sort of smiled in a way that suggested, 'what's the big deal'?

I understand that others cannot be expected to think proactively about our daughter's allergy. It is our responsibility. That being said, upon seeing our daughter they should have shown us the courtesy of putting the sandwiches away given that they had just heard about her allergy. This type of passive aggressive behaviour in response to our daughter's allergy bothers me.

Fittingly, as the family left one of the kids polished off his sandwich and innocently slid his hand along the rail as he ran down the stairs. One of the toughest things about the allergy is its ability to replace the joy of watching a child happily playing with the invisible terror of microscopic peanut proteins that might not even be present.

It's amazing how different the world looks when you're managing an allergy.

Dear Grandma, "It takes a village".

Did This Blog Save A Life Today?

Today our daughter had her second anaphylactic reaction. It was truly another formative experience. What was scary this time however is that we do not know for sure what caused the reaction. In December we isolated the cause to be peanut, her peanut allergy subsequently being confirmed by our allergist. This time we do not know what happened, which is more frightening than the emergency situation itself.

Anaphylaxis is an invisible condition. Your child goes from perfectly fine, to near death and then quickly back to being okay within minutes. It's crazy to watch and not being able to pinpoint the allergen makes it even more frightening.

We think it might have been a dog this time! Our daughter is allergic to dog saliva - wheals appear when a dog licks her face. This is tough as our daughter loves 'doggies'. A few of our friends have dogs and initially they did not really understand how serious the reaction was. Once our daughter had her peanut reaction in December our friends usually have the dog out of the home when we come over out of concern. They have been very accommodating!

Today our daughter ran her hand down a dog's coat before we could stop her. We think she then touched her eye. Within 10 minutes her eye had swollen shut, wheals appeared on her face and she started to get serious swelling down the side of her face and under her jaw bone. I was not with her at the time and my wife was amazing in this critical moment.

My wife did not hesitate to use the EpiPen. My mother happened to be in town and helped my wife prepare the EpiPen for the injection. In the interest of full disclosure, my mother was the Teacher in the It Takes A Village series. She spent her whole career fearing a scenario just like this. Instead of facing an anaphylactic episode with a student, she was forced into a potentially fatal emergency situation involving her granddaughter.

My mother and my wife were incredibly calm and effective in the heat of the moment. They quickly and calmly administered the EpiPen, became emotional only after the reaction started to subside. It is very difficult to check your emotions and deal with the situation objectively when so much is on the line.

Once I arrived home I made sure my daughter took a little more Benadryl as the swelling had returned. We then rushed her to the hospital. I called 911 on the way to let them know what was going on. Out of concern for my ability to drive safely under the circumstances, 911 asked me to pull over and they sent an ambulance. Though I knew I would be fine I thought it best to not second-guess 911 so I pulled over. For the second time in a row the paramedics were amazing, arriving within 5 minutes and creating an overwhelming sense of calm. Though the reaction was not nearly as bad as the peanut response, the standard three hour wait in the ER was prescribed to make sure that the reaction safely subsided.

The paramedics and doctors were very impressed with the use of the EpiPen. They noted that all-too-often parents bring in a child without the EpiPen being used, often toting an unused EpiPen. The Emergency Room doctors have these parents administer the EpiPen in the ER under supervision, all the while coaching them to do this right away next time. The doctors reinforced the fact that you have to act quickly and that many parents just cannot bring themselves to drive a needle into their child's leg.

Bottom line: you simply have to do this!

My wife said afterwards, "If I hadn't heard so many stories from other parents through the blog, I can easily see how difficult it could be to use the EpiPen. You don't want to believe that the reaction is as serious as it is. You don't want to believe the situation is truly life or death. It would be easy to convince yourself that a good dose of Benadryl and a hug would be enough to make her better and that using the EpiPen is only for the greatest of emergencies. Being exposed to the experiences of other parents gave me confidence to use the EpiPen without hesitation. There was no questioning the use. It was simply the next step.

I credit the blog for giving me the confidence to use the EpiPen. It was awful to inject the needle into her leg but I knew I needed to do it. Before today I really wanted to believe that the first reaction was an isolated incident. I would never have driven a needle into my daughter's leg if I did not know about cases where children were lost due to a delayed response. Though we'll never know for sure, it is possible that today I saved my daughter's life and I credit our blog for that."

I agree with my wife that writing and discussing the blog played a major role today. She was calm and knew exactly what to do. She was also reassured by my past blog posts about the fact that these reactions are (unfortunately) commonplace for children with multiple severe allergies. Avoidance is never going to be absolute so it is critical to be prepared for an allergic reaction.

Our daughter was again a brave little girl today. It was very interesting this time to explain to her why Mommy drove a needle into her leg. She now understands that doggies make her sick. Her ability to communicate is going to be a great ally in managing her allergy ... she already says 'No Peanuts Please' when she sees cookies or other food and 'Doggies Make Me Sick' is now added to her list of phrases.

Today was a very tough day but it is comforting to know that we were ready. We acted swiftly and with confidence. Though you never want to see your child in a life or death situation, today we learned a lot about ourselves. It is very satisfying to know that we are able to execute our anaphylaxis emergency response plan.

Let's hope these skills are not needed again any time soon.

Ambulance Chasing

Last week my wife dropped our daughter off at the Aquarium to go see the fish, dolphins and of course the beluga whales (cue the Raffi song!). On the way to pick up our daughter my wife passed an ambulance racing out of the park. Of course the first thing she thought of was that our daughter might be in the ambulance after having an anaphylactic reaction to peanuts.

It is amazing how your perspective on EVERYTHING changes with anaphylaxis. Unfortunately the hard-wired parental tendency to think of the worst case scenario is put to the test more times than we would like.

The good news is that our daughter was safely watching the dolphin show and no anaphylactic reaction took place. My wife breathed a sigh of relief.

This sort of thing happens to me all the time now ... it is a very strange thing to become accustomed to.

This Is Just Not Fair!

I pride myself on being a strong person. This whole peanut allergy thing brought out a new element in my psyche however. Last Sunday we were at a brunch hosted by our dear friends who happen to be from France. The laid out a beautiful spread with croissants, pains aux chocolates, pointe aux cerises, brioche, crepes and of course champagne!

While we really enjoyed our time, I did have a personal 'rock bottom' experience which had nothing to do with our hosts. Of course our daughter loved the sight of the gorgeous spread that lay before us. All I could do however was give her a platter of baguette and apple slices with juice. Our mistake was not bringing a specific breakfast for her but in reality I was more struck by the difficulty of managing her allergy in this situation.

I had an amazing Nutella crepe ... of course Nutella has hazelnuts and though she did not display an allergy to walnut with our allergist, it does seem that people can be allergic to specific tree nuts so it is not worth taking the risk. I decided to put jam on her baguette and reached for the knife ... of course I quickly recoiled as the knife neared my outstretched hand - the knife had been used to spread Nutella on another crepe.

So I asked for a new knife and while I did that my daughter reached out and grabbed a slice of brioche which has (I think) has egg in it ... I quickly took it out of her hands.

Even as I write this a week later I still feel a little overwhelmed. We are not 'those parents'. Dealing with peanut allergy, egg allergy and anaphylaxis is very difficult for us given that our natural style is laisse faire. Obviously we are still adjusting to our 'new reality'. It is very difficult for people who are used to being the life of the party to now shift into seemingly neurotic, overbearing parent mode. It is just bizarre.

I have to admit that as I looked around the brunch table and saw the other couples enjoying themselves, laughing, chatting all the while (appropriately) oblivious to the fact that I was struggling to make sure my daughter had something safe to eat, the first thought that entered my mind was 'this is just not fair'.

I know how ridiculously defeatist that sounds but it was the first thought that entered my mind. I am a big proponent of 'it is what it is ... move on'. I am a realist by nature.

That is all the more reason that I felt I should blog about my moment of vulnerability ... it was an out of character experience that in retrospect I feel was totally justified and appropriate. Sometimes this whole thing is overwhelming. Sometimes parents of anaphylactic children will feel all alone. We are lucky ... our friends are very supportive. That being said it is unnatural to worry so much about every little thing your child eats ... you have to be strong! The allergy is omnipresent.

A Dreadful Note

The 'It Takes A Village' series here on NoPeanutsPlease focuses on food allergy from the perspective of those who support food allergic children with in the community - teachers, other parents, child psychologists and even the peanut industry. Ironically I have devoted little time to the perspective of those who actually have the peanut allergy.

This week I had a post called 'Code 2' which discussed a first-hand account of an anphaylactic reaction. Very scary and quite thought provoking. It gave me more insight into what it is like to go through an anaphylactic reaction and left me wondering how somebody could adapt to multiple near death experiences. Today I had a similar reaction to a story about what it's like to be a 12 year old child with a peanut allergy within the school setting.

Parents have the best of intentions. We've explained the allergy to caregivers before and in future would surely send in notes and anaphylaxis response plans for teachers in daycare or elementary school. Parents are correct in thinking that these actions help make their kids safer. However, the flip side is that the child's feelings and self-image are also important and need to be considered. This may sound obvious but the article makes it clear that there is a delicate balance to be struck, as safety is generally not 'hip':

"In my backpack on the first day of school ... is a note from my mother to the teacher telling her about my severe peanut allergy. Every year at this time, I have to hand in this dreadful note. The teacher stands in front of the whole class and reads this note out loud ... I feel so guilty because the some kids sigh and say, "Awwwww." It's so embarrassing because after the teacher is done, some students walk up to me and say, "Thanks a lot, Allegra!"
"... Two years ago, my mom gave me a hideous denim purse to put my EpiPen in. I had to carry it around everywhere I went. I am not what people call the most girly girl, so I was not happy about that."

We'll have to make sure our daughter picks out her own purses! I also think it would be important, when she is more aware of her allergy, to get her perspective on what form of communication would be the most comfortable for her. I will never sacrifice safety purely for her comfort, but they do go hand-in-hand and if there is a way to accommodate both I will certainly try. As seen in the article, if our daughter does not like the purse for her Epipen then she will not bring it with her and that puts her life at risk.

Leaving My Safe Zone

Recently, our family took a weekend trip to Whistler. I thought travel planning and preparation with kids was a lot of work before I knew about my daughter’s allergy…I didn’t know what I was in for once the allergy was added to the mix.

As I prepared for the trip I found myself going over and over the list of things we needed to bring, desperately afraid I was going to forget something that could cost my daughter her life. It seems silly now but it was the first time I was leaving my ‘safe zone’. I hadn’t realized how much work we had done to make our home and daily activities ‘peanut free’ and allergy safe.

The night before we left my head was riddled with ‘what if’ scenarios. What if the condo we are staying in has peanut residue from a previous tenant? What if the other people in our group forget where the Epipens are? What if…

Of course the weekend was fine and we had a great time with the kids snowshoeing and playing in the snow. I relaxed. However, as we were leaving everyone wanted to stop for brunch before we hit the road. As soon as we walked into the diner my muscles tensed and my brain went into overdrive. My eyes kept scanning the restaurant for signs of peanut and it did not help that when we sat down there was a basket of peanut butter and jam packages right in the centre of the table.

Before we ordered my husband asked the kitchen our standard questions to determine what our daughter could eat and as usual we got the weird looks and rolling eyes. We concluded the pancakes should be safe and my daughter gobbled them down. As we were all getting our jackets on my fear was realized and our daughter had a few hives on her chin and hands.

We gave her a dose of Benadryl and waited about thirty minutes before the redness began to subside. The entire drive home I was on pins and needles. Everything was OK and thankfully the episode did not escalate. We never did figure out what specifically caused the reaction.

What this experience taught me (and the experiences of those that have posted on our blog) was that my fear is warranted. My daughter is going to come in to contact with peanuts and I am not going to be able to predict the time or place. I alone am not going to be able to make the world outside my ‘safe zone’ allergy safe and I could drive myself crazy trying to make it so. Some of the best advice I received via the blog was to simply be prepared for a reaction and not spend my days trying to prevent one.

It Takes A Village - Peanut Terrorists

I just read a excellent yet disturbing article about the challenges that can face our allergic children in schools. It is one of the most comprehensive articles I have read to date on food allergy. One section of the article talked about how other parents and other kids can react in a very hostile and dangerous fashion to those who have allergies. Here are a few excerpts ... what are these people thinking?

"a parent of a nonallergic child announced at a PTO meeting that he'd continue sending his child to the elementary school with peanut butter sandwiches and tell his child to "smear" the peanut butter along the hallway walls."

What message does that send to the child of that astute parent?

"Snarky comments about the "peanut police" pepper blogs and online message boards. "We are considering dressing our daughter on Halloween as 'The Death Peanut,'" one parent joked."

Indeed. Forgive me if I do not join you in laughter.

"At the middle school, a teacher brought in a homemade casserole containing nuts and invited the allergic boy to eat it; when he said he couldn't because of his allergies, she had him stand outside the classroom (in the cold) while the other students ate. This child was also taunted and bullied by other students in the cafeteria, including one who refused to move from a peanut-free lunch table and ate a peanut butter sandwich—which resulted in the boy's suffering an extreme allergic reaction that landed him in the hospital"

This article just left me frightened. I could not conceive of intentionally jeopardizing the health and safety of any child. That is just twisted. Will we really have to go through this? Let's hope that these people are truly at the fringes and that the majority of parents take a safer, 'saner' approach.

According to Connie Weil, PhD, a psychologist at Children's Memorial in Chicago, severe food allergy is a "chronic illness, but it's a hidden illness, so it's misperceived by society." While that neatly summarizes the underlying issue, misperception is one thing but terrorizing allergic children is shocking even if extremely rare.

Though our being aware of these scenarios makes our daughter safer, I actually wish I never read that article.

Six Degrees From The 1%

In writing my Airline Policy post I found myself hung up on the fact that many people view severe food allergy as "only affecting 1%" of the population. Through my research I have come across a number of sites dedicated to children lost to food allergy. Tonight I came across a touching tribute for a young girl named Kailey who suffered a fatal anaphylactic reaction to milk in March 2005. I cannot even imagine what her parents and family must have endured.

In the context of such a loss, the "1% argument" lacks empathy. The "1% argument" also fails to consider that severe food allergy affects many more people than those with the actual allergy.

The common response to a mention of our daughter's peanut allergy is for people to tell us about a food allergy in their life, or in the life of somebody they know. I suspect that despite such a small proportion of the population being severely allergic to food, within six degrees of separation just about everybody is affected.

It truly takes a village!

Peanut Rack Attack

So we were in Shoppers Drug Mart today. As I put our purchases on the checkout counter I looked away from our daughter for maybe 20 seconds. When I looked back she had pulled a bag of honey-roasted peanuts from a kid-level rack and was trying to open it with her teeth. My heart skipped a beat. I quickly grabbed the bag but it served as a reminder of the constant battle we'll have with this allergy. Sometimes you feel like you're surrounded.

She cried when I took the peanuts away ... she has no idea!

Gunshy

A Reuters article caught my eye tonight. It talked about anaphylaxis in general and specifically mentioned that many parents are apprehensive in using an EpiPen. I have blogged about the fact that teachers and other care givers are frightened by the thought of using an EpiPen to save a child's life.

Parents too are frightened, and perhaps even to a great extent since it is their child's life that is hanging in the balance. I tend to be calm in the moment of an emergency and would not hesitate to use an EpiPen. The statistics say that there is a reasonable chance that we will have to do this. Am I ready? Yes. Would I use the term 'comfortable' to described how I feel about the thought of having to save our daughter's life with an EpiPen? No.

Be ready, but don't feel bad if the thought of using an EpiPen on your child makes you queasy. I think I would be more concerned if it didn't.

The bottom line however is that in the event of an emergency, you need to be able to put your fears aside and act quickly. There would be no time to waste. You would need to be strong!

I would be interested in comments from those who have had to do this.

It Takes A Village - School Psychologist

The It Takes A Village series is focused on how people in the community are involved in the support of allergic children, especially those with anaphylaxis. This article is an interview with a school psychologist named Nadine O'Reilly, M.A., C.S.P. Nadine is a practicing school psychologist and also holds the position of Coordinator of Special Services within a large public school district in northern New Jersey (complete bio).

Nadine spent years counseling parents on how to manage their child's allergy. Though she empathized with the parents of food allergic children, it is difficult if not impossible to truly identify with what parents go through unless you are the parent of a food allergic child yourself.

Well that's exactly what happened.

A few years ago she discovered that her son has anaphylaxis to peanuts. Unfortunately in order to discover the anaphylaxis she also had to go through an experience as frightening as our Boxing Day emergency. She notes below that it was very strange when the tables were turned and all of a sudden she had to put her own advice into action. Here is an excerpt from her homepage:

"When I found out that my son had a peanut allergy, I thought it was the end of the world. My imagination went into overdrive: A life filled with fear; no more invitations to birthday parties for my precious son; no more dining out for my family; sneers from others to the words “peanut allergy…” Every bad thing I could think of that would be associated to my son being the “peanut allergy kid” came to my mind."

I was struck by this. Despite her years of education and experience, nothing prepared Nadine for the experience of dealing with anaphylaxis in her own child. I suspect that this experience has made Nadine even stronger and more empathetic in her role as school psychologist.

The peanut section of Nadine's website displays an impressive combination of first-hand parental perspective and objective clinical advice. The site's heightened level of humanity makes it even more approachable for parents. I would encourage the parents of a food allergic child to read the relevant section of her site as she covers much more than just peanuts.

Here is the interview with NoPeanuts:

NoPeanuts:
The initial shock of an anaphylactic episode is incredible. The realization that your child has a life-threatening allergy is part frightening, part surreal and part heart-breaking. In our case we coped by meeting it head on and doing as much research as we could. This blog is also a great outlet. What is your advice to parents that might be within 24 hours of first discovering such a severe allergy in their loved one?

Nadine:
Wow, I'd like to say something "clinically correct," but what instinctively comes to mind is "Hug your child tightly and breathe..." Seriously, give thanks your child is alive and pat yourself strongly on the back for getting through the experience in one piece. 24 hours from the episode isn't even going to take you into the Specialist's office, so refrain from doing any serious research until a Board-certified Allergist has clearly defined your child's condition and pointed you in the right direction. And definitely do begin educating your child about what happened in the most age-appropriate manner possible (begin by congratulating her on how well she handled herself).

NoPeanuts:
Today we had our first case of having to inform an Instructor that our child was severely allergic to peanuts. What is your advice to parents that have to do this for the first time, given that it's quite uncomfortable to ask for a 'peanut ban'?

Nadine:
As a school psychologist, I've been trained to hold parent meetings that will inevitably touch upon controversial information. What I wasn't prepared for was to have the tables turned and be the parent advocating for her child! I have a deep respect for parent advocates now; it's not easy.

Go to chat forums and ask parents in similar situations how they've dealt with their first notification meetings, and ask for specific statements that were made that others might be able to recall. Then, knowing how predictable humans are ;), practice what you'll say when you're faced with similar scenarios. But please, don't go in expecting a confrontation unless you really want one - defensiveness will get you nowhere. And you'll be amazed
at how cooperative some districts can be. Food allergies are far more prevalent of late. It's unlikely you'll have to pave new ground.

Role-playing is an awesome tool. Practice what you'll say ahead of time while looking into a mirror and speaking aloud. Now, I know that sounds ridiculous, but consider how we really don't see ourselves the way in which others see us. Know yourself before you go into a potentially stressful situation.

NoPeanuts:
How common is it for parents of other children to exclude children with allergies from birthday parties, etc? How should parents deal with that scenario?

Nadine:
I wish I had an answer for that one. I know my son's been excluded from one, and it broke my heart. Depending on your child's age, you might want to come up with creative ways to make them feel better. I'm not an advocate of fibbing, but I know that if I had taken a "truth only" approach the day my son felt left out, I would have really hurt and confused him more (concepts such as "ignorance" might be above a toddler). My advice would be to send out a friendly memo to parents at the beginning of the school year (or as soon as you learn of the allergy). Introduce yourself and your child, and provide a phone number so others can contact you with any questions. In that memo, mention that you're reaching out with this information so that when birthday parties/play dates come around, others know that you are there to help and you'll be happy to provide your son/daughter with his/her own food, and that you'll be happy to chaperon. Who can resist such an offer?

NoPeanuts:
Obviously we are still fairly new to this ourselves but what is your advice to us as parents who are but three weeks into dealing with
this allergy and still do not officially know what we are up against?

Nadine:
I remember the first week my son went back to school: I pictured him in a minefield within which he'd dodge classmate after classmate with peanut-butter-smudged hands reaching out to hug him. :) But reality is, it's not as scary as it's made out to be. Frankly, I feel for parents of children with milk, egg, and/or insect allergies! And my hat's off to parents of children with multiple food allergies. Wow.

I guess the key is in teaching your child to self-advocate. If your daughter knows not to touch anyone else's food, and to eat from her own plate (I'm quoting from "Peter" here ;), as well as how to recognize symptoms of an allergic reaction, she'll be absolutely fine. It's going to be just fine, you'll see.

NoPeanuts:
What are your thoughts on having an anonymous blog versus us showing our names? You have names and photos of your (beautiful) son on your site which makes it more personal. Have you encountered any issues or developed any concerns with having that personal information out there?

Nadine:
Not an unreasonable concern at all! Funny...with me being a psychologist, and my husband a police officer, you'd think we'd be extra paranoid! But I think a simple Google search will bring up a newspaper article with images of us anyway, so there's no fighting the Internet. Even if I wanted anonymity, I couldn't have it after publishing a children's book on food allergies. It's a very personal choice, I guess.

It Takes A Village - Teachers

I am going to start a new series of articles outline the impact that food allergies have on various people in the community. "It Takes A Village" will provide stories and thoughts from others in the community that may not have an allergic child but at times are responsible for the care of children that do have severe allergies.

It is important that parents of allergic children consider the feelings and apprehensions of others during the process of educating and communicating their child's allergy condition to caregivers, other parents, teachers, etc. To do that it is important to understand their perspective.

As you know many schools have instituted policies and procedures to prevent and address allergic children's challenges. The first instance of "It Takes A Village" is focused on Teachers.

- - -

It Takes A Village - a Teacher's Perspective
Source: A Primary & Elementary School Teacher's First Hand Account

I was teaching over a span of 25 years in primary and elementary schools. Every September, forms were sent home so parents could give an update on each child’s status regarding address, emergency contacts, medical issues, etc. I made a copy of each completed form for future reference and sent the originals to the office to be placed in the students’ files.

Over my first fifteen years of teaching, I paid particular attention to health issues such as cystic fibrosis, asthma, and diabetes. I always made note of the many allergies that were listed on the forms but I didn’t have any students with severe allergies. At least, I don’t think I did. No parent ever came forward to tell me that an allergy was severe. There was no mention at staff meetings that we had a child in our school with a severe allergy.

Within the past ten years, however, I have seen an increase in the number of children who have severe allergies. It is now the responsibility of each teacher to become familiar with all children in the school who have a severe allergy. Early in the school year, the staff meets with the school nurse who demonstrates the proper procedure for using the Epi-Pen. She informs us which children in the school have severe allergies. Posters and pertinent information about each of these children is posted in the staff room.

We have had several children in our schools with severe allergies to peanuts. Our school does not have a school-wide ban on food containing peanuts. There is a ban only in the specific classroom of the student affected by the allergy. In consultation with the parents, the school administrator may also ban ice-cream in these classrooms.

One year, when I was teaching kindergarten, I had a child who had a severe allergy to fish. I met with the mother and she told me what procedures to follow if an allergic attack occurred. She told me to administer benedryl at the first sign of watery eyes and to take the child to the hospital if I used the Epi-Pen. I was to call her at work immediately and she would meet us at the hospital. There was a “No Fish” policy in our school and I have to admit that sometimes there were slips where someone brought a tuna fish sandwich or heated up fish in the microwave in the school cafeteria.

This was the first time I had a child in my classroom with a severe allergy. It made me nervous. I kept a close eye on the little boy all the time. I talked about him in the staffroom and I let every staff member know where I kept the Epi-Pen. On one occasion, the child was completing a cutting activity when I noticed that his eyes were watery. He told me that he poked his eye with his scissors but I was too afraid to take his word for it. I immediately administered the benedryl and reported it to the office. Mom was called and arrived in no time. It was a false alarm but a nice trial run for me in the meantime. The child never had an allergic reaction in the classroom and I never ever had to use the Epi-pen.

I feel that it is up to the administrator of the school as well as the visiting public nurse to educate teachers and other parents about allergies. When the administrators take the situation serious, teachers will also take it serious. You can be sure that the children’s classroom teacher and the co workers in adjacent classrooms are well aware of the allergy situation. But does every teacher in the school take time to meet and greet these children and familiarize themselves with the situation? At some point, every teacher in the school will be doing lunch duty and so every one of them has to take some responsibility. In all my years teaching, I do not recall one incident where a child had a severe allergic reaction and the Epi-Pen had to be used. But we must realize that one incident is too many.

Tumbling Peanuts

So today we had another of many firsts to come in dealing with our suspected peanut allergy. Our daughter went to 'Orff Tumblers', a class that focuses on music and movement ... two of our daughters favourite things!

The difference today was that my wife was a 'Peanut Parent' for the first time in a group setting. Being a Peanut Parent of course entails a whole host of standard precautions including making sure your child is wearing her Medic Alert bracelet, carrying two Epi-Pens and bringing along snacks from home.

The newest precaution is having to 'talk to the teacher' about our peanut allergy.

My wife felt a little uncomfortable heading into the community centre, fearing a negative reaction from the instructor. She did not want to be perceived as being the ridiculous, overcautious parent and she did not want to face condescension from the other parents at a supposed inconvenience of their peanut-loving children. My wife was also concerned over our daughter standing out and being some sort of pariah.

This is a walk that we will surely become accustomed to. I have not done it yet and I have to admit it's not something I am looking forward to. Though nobody wants to be 'that parent', we have no choice. The safety of our daughter has to trump our personal insecurity.

I have a theory (based on parental intuition) that the way our daughter manages her allergy throughout her life will largely be based on her observations of how we handle it now. We must be confident, consistent, logical and thorough. We will often have to maintain an even keel despite the fact that at times we are truly afraid.

NoPeanuts Tip:
Managing a peanut allergy is an education process, both for yourself and for others. Parents must have the confidence and strength of character to assume the role of teacher whenever it is required. Not doing so will likely put your child at risk.

So what happened with the instructor today you ask?

Thankfully the instructor demonstrated an understand of the situation, made the announcement to the class and ensured that our daughter had a great time, without singling her out. Our daughter enjoyed the class immensely and we felt it was an initial Peanut Parent success. She has no idea that she is any different from the other kids and we hope to keep things that way.

The one wrinkle in the day was the response of the other parents to the instructor's announcement that our daughter had a peanut allergy and it would be best for any peanut snacks to be consumed outside. Our nanny was also in attendance and she clarified for the parents that the peanut allergy was severe and that an anaphylactic episode could be triggered by a even minimal exposure to peanut ergo it is best to leave peanut treats at home.

The response from the parents was interesting, or should I say their lack of response was interesting? None of the parents said a single word and many wore expressions that ranged from indifference to annoyance. I suspect this is going to be a common response. I suspect that we will frequently encounter resistance, a lack of understanding, a lack of knowledge and perhaps even an air of indifference when we explain to people that our daughter has a peanut allergy and that we need their help. It is going to be important to be patient and strong in those situations.

Though we need to ensure that we do not scare or shock the other parents, it is important that they understand the risk that they could place our daughter in by introducing peanuts into the room. It is not our goal to make them care, just to ensure that they are aware of the allergy.

Next week we are going to bring peanut-free treats for everybody! Our daughter made many new friends today and we want to make sure that she is not seen as the 'Snack Monster' for any of the other kids who enjoy their peanut-filled snacks.

Of course the irony in all of this, is that based on my research these parents should probably not be introducing peanuts to their children at this age anyway, so an announcement should not really be required.