Youngest has a few things that begin with the letter A: asthma, anxiety disorder, Asperger’s Syndrome, and allergies.
All of his “A” issues are present every day, and all have times when one is more pronounced than the others, but the food allergy issue is constantly on my mind. Simply, having a child with food allergies is a 24/7 issue.
His allergies are environmental — trees and grasses and molds and dust and cats and horses — and to food. He is severely allergic to tree nuts (almonds, walnuts, pecans, and cashews) and he tested positive for peanuts. In addition to those allergies, he’s recently had reactions to coconut and palm oil.
When I grocery shop I must read each label every time. Companies can change their products without warning and often do. Many use the same equipment to make a variety of products, some of which contain nuts. Even when I make all of my son’s treats at home, I still am limited as to what type of chocolate chip I can purchase. One safe chocolate chip for us is Enjoy Life brand. I’m lucky that my local grocery store carries this brand because these used to be hard to find and super expensive to order them online.
I’m always thinking about what other people around us may be eating. When friends come over I have to be aware of what snack foods they might bring with them. I need to talk to the parents when Youngest has a play date at a friend’s house. I need to go over his allergies when we have a babysitter. When we’re invited to dinner at a friend’s house, it’s usually easier to decline the invitation than to go through the list of what they can’t serve and what foods can’t be in their kitchen when making the meal. And eating out is tricky. Some restaurants are wonderful and others are not. Cross contamination is always a possible problem.
I never leave home without his epi-pen.
School is a hard place for a child with food allergies. Youngest is in 3rd grade. Public school. I have to put my trust and faith into the school staff since he’s with them from 7:30 in the morning until 2:45 in the afternoon.
No big deal, you think.
The school knows what they’re doing, you’d say.
His teacher has dealt with food allergies in other years, you imagine.
What you think, say, and imagine might be — could be — true. But….
It is a big deal. Food allergies can be deadly.
They don’t always know what they’re doing. I have learned this the hard way.
His teacher may have dealt with allergies in prior years, but were those allergies as severe as my son’s, and did she handle them well? I simply do not know the answers to these questions.
And it’s not just my son’s classroom teacher that needs to know how to handle food allergies. Here’s a list of all the people that need to know, because they come in contact with my son — and other children with food allergies — either daily or weekly:
The classroom teacher.
The classroom aide.
The other teachers and aides in his grade since they often switch classrooms and join together for group activities and assemblies.
The school nurse.
The substitute for the school nurse when she is on vacation or out sick.
The office staff and office volunteers.
The principal, assistant principal, and the administrative interns.
The PE teachers.
The art teachers.
The music teachers.
The guidance counselors.
The librarian and her aide and all the weekly volunteers who come in to shelve books.
The computer/resource teacher and her assistant.
The teacher cadets and student teachers.
The substitute teachers.
The cafeteria workers.
The parent liaison and other parent volunteers.
The bus drivers.
And last but not least: the other children and their parents.
That’s a lot of people. A lot of people who do not know everything there is to know about food allergies and cross contamination and hidden ingredients and what happens when you don’t wash your hands after eating and how the books and desks and doorknobs and computer keyboards and shared supplies in each classroom are touched by all the children after snack and lunch.
And I can say with complete confidence that most of these people don’t fully grasp that if my son eats an almond, or a walnut, or other tree nut, he could die.
Almond = death. Walnut = death. Pecan = death. DEATH. Not an itch or a rash or a quick trip to the pediatrician. Not a day off of school while he recovers from an upset tummy. If my son eats a tree nut, it could result in DEATH.
Food allergies are serious. Life or death serious. My son’s food allergies are not a joke. I am not exaggerating the severity of these allergies. Yet that’s exactly how many people view food allergies. It’s not until they know of someone who is rushed to the ER that they come to understand the severity of food allergies. Or maybe they only become aware of the seriousness of food allergies after they hear about it on the news or from their Facebook feed.
Here are two tragedies:
A teen girl at a rice crispy treat not knowing it was made with peanut butter.
A college boy shared a cookie with a friend while home for the weekend.
School should be a safe place, and Youngest loves school, but there are problems in regards to his allergies. When there is a classroom party where food is brought in for the kids to snack on, a form has been completed, signed, reviewed by the nurse and filed at the school office informing the room mom and teacher that I must be notified of all classroom parties so that I can confirm all the snacks and craft supplies are acceptable and safe to have in the classroom. This is our fourth year dealing with food allergies at this school and, unfortunately, this process has only gone smoothly one year. It’s too early to say if this year will be a good one or not. Only time will tell. (Back when my now 21 year old son was in elementary school, he had a food intolerance to both peanuts and soy, and the process back then was to fill out a similar form but to expect no accommodations. The most they’d do was to have my son sit alone on the side of the room while the others did the craft or ate the snack. I expected in all these years an improvement, but have not found it to be a significant improvement.)
Here’s how it should work, and how the powers-that-be think it works: The teacher notifies the room mom of the party date and about the allergy. The room mom then contacts me to tell me a party is planned and to give me a list of what items they’d like to have at the party (crafts and food). If there are other children with allergies in the classroom, I’ll confer with those parents to make sure all our children will be safe. I then let the room mom know what crafts and food items on their list are safe and which are not. Then I either purchase or make the safe snacks (because many can not be purchased, and my kitchen is a safe zone). Other parents contribute bottled water or juice boxes, paper products, craft supplies, games, and decorations.
But instead this is how it worked the first couple years: I find the notice for a party in my son’s backpack (or on the monthly class calendar that doesn’t get sent home until half way into the month, if I’m lucky enough to receive one). I contact the room mom informing her of my son’s allergies and the steps needed to ensure his safety. The room mom gets defensive, thinking that I’m telling her what to do or calling her stupid. Then she’ll tell me not to bring any food since another mom has already volunteered to get a large bag of pretzels and it’s too late to switch (and she’s heard that pretzels are safe for kids with peanut allergies). Then I have to try to explain that some pretzels are made on the same equipment as pretzels with peanut butter. And then I need to explain that his most severe allergies are to tree nuts and it’s not as simple as just looking for the words “peanut free” on the front label of snacks. Some granola bars use almond flour or crushed walnuts. Gluten free snacks are often loaded with tree nut ingredients. After a not-so-great conversation with this woman, I then contact the teacher, bringing the teacher up to date on what’s happening and what needs to change. The teacher then has to step in to make sure the room mom and her list of volunteers understand the food allergy issues. No one ends up happy, and I spend the entire classroom party double checking everything the other parents have sent in.
True story: At the classroom party when Youngest was in first grade, they had pretzels made with peanut butter, pre-packaged snacks (made on equipment shared with tree nuts), and apple slices (which were on the allergy list at that point due to an allergic reaction my son had with them). Youngest was only able to enjoy the water bottles at that classroom party. And I spent the two hours closely monitoring who touched what and wiping surfaces and instructing hands to be washed.
You want to know what it feels like to put my son on a bus in the morning, knowing he’s going to come in contact with all these people? It feels like I’m setting him up for failure. It feels like I’m feeding him to the lions. It feels like I’m playing Russian roulette by sending off my fragile child to a place where anything can happen. It is terrifying and scary.
It’s well and fine that the doctor and I have filled out forms and have supplied epi-pens to the school nurse and to the teacher. It’s helpful that the teacher is aware of his allergies. It’s comforting that the cafeteria has been informed and keeps a photo of my son with a list of his allergies taped to a wall.
Anything can happen. At any time.
It’s usually the parents that don’t get it. Such as that classroom party when every item brought in was off limits. And some of those parents were angry that the daily classroom snack they were instructed to send in could not have any peanuts or tree nuts in the ingredients. They were angry. Excuse me, but how do they think I feel? I’m angry that it’s a struggle to get everyone to understand the severity of food allergies. Not just classroom parents and school staff, but family members and neighbors and birthday party hosts and camp counselors and babysitters and EVERYONE. I’m angry that it’s always such a struggle. I’m angry that there are children that died because they ate a food they were allergic to. I’m angry this could happen to my child. I’m angry that I can’t trust other parents to understand and help. I’m angry that even those that do want to understand and help, may not know how to do so correctly. They may make cookies for my son and think all is well, and their intent is lovely, but they don’t really know how to read the labels clearly. They don’t know that brand name chocolate chips could have traces of nuts in them. They don’t know that even if I graciously accept their home-baked goodies, I will not feed them to my son. I’m angry that I have to be so diligent with everything my son puts into his mouth and with the products we purchase for his hair and body. Soaps and shampoos and hair gels and even household cleaners have oils and ingredients derived from foods my son is allergic to. I’m angry that even my husband has to be reminded of the severity of our son’s food allergies. Since he doesn’t deal with it throughout the day (he leaves before breakfast and returns home after dinner time), it’s easy for him to forget — to slack off and impulsively offer to take Youngest out for a treat. Finding a place we can go for a safe treat is not easy and demands research and planning and my husband doesn’t always remember this. And he sometimes forgets to take the epi-pen with him. I’m angry that I can’t control everything in my son’s environment.
It was end of summer, August 2011, when I made magic cookie bars for my oldest son as he was going off to his first year at college. These cookies have lots of yummy ingredients including chocolate chips, white chocolate chips, butterscotch chips, and nuts. Even though the recipe called for nuts, I didn’t always include them. Because these were my oldest son’s favorite cookie, if he was in the mood for nuts I’d toss some on. If not, I’d add more chocolate chips. My youngest son, 5 1/2 at the time, was a super picky eater. SUPER PICKY. By his own choice he had never had a magic cookie bar. During that time in August of 2011, as I was making the cookies for my oldest son to take with him to his freshman dorm, I tossed on a few teaspoons of crushed walnuts. Just a small amount.
Turns out this was the one time my picky 5 1/2 year old decided to try a magic cookie bar. I knew how picky he was and how he had an issue with certain textures, so I gave him a very small piece that I cut off from a larger square, and he promptly put part of that small piece into his mouth. He immediately spit it out and tossed what was left onto a napkin. Yuck, he declared. I was not surprised by his reaction. He’s picky. I didn’t think anything of it at first.
But then, in less than a minute, he said his tongue felt funny and tingly. He ran to the bathroom saying he felt sick and he told me his mouth felt weird. His face got red. And he got itchy. And he started wheezing and coughing. The coughing quickly got worse and worse to where he couldn’t get air in or out and could not stop coughing. And then he started vomiting but his mouth was swelling and he couldn’t breath and there was no vomit coming out.
He had only touched part of the cookie to his mouth then spit it out. He didn’t chew or swallow any of the cookie. It had only touched his mouth. What amounted to a minuscule piece of a walnut sitting in his mouth for a second or two set off an allergic reaction that scared the crap out of us.
We didn’t have an epi-pen at the time. Up until that time we didn’t know we needed one. Youngest had been tested for environmental allergies and we knew he was very allergic to trees and grasses and horses. We had no idea he had food allergies. On that day we were lucky that over the counter medicines and his rescue inhaler helped him to breath again.
A week later his allergist did another skin test to determine if it truly was the walnut that set off the allergic reaction. They didn’t want to assume. Usually they wait 15 minutes after doing the pricks. After only 1 – 2 minutes his allergy to nuts was evident. He has since had blood tests to confirm these results.
I never want him to experience anaphylaxis ever again. Obviously.
So I’m vigilant. I worry. I ask a million questions and read labels. I don’t trust people. Nothing can be taken for granted. Nothing can be assumed.
But yet I have to trust. I choose to send my child out into the world — into our public school — to learn and to socialize and to be part of our community.
And each time I send him off, I worry. My worry might be reduced if all those adults and children were to be more aware. I know they’ll never truly understand — not until and only if a severe food allergy becomes part of their life will they really understand — but oh how I wish they’d become more aware.