When Food Bites Back
The Life of Food Allergy Realities
My daughter Rosie is now 3.5 years old. At the ripe old age of 9–10 months we learned that she had a serious, life threatening, allergy to dairy. A life is turned upside down when something that is considered safe to consume ends up causing an internal battle between antibodies and supposed “foreign bodies.” Since then we have been fighting off dairy as the known terrorist it is. This war includes limiting visits to restaurants for fear of allergen exposure, removing dairy from the house to reduce the risk of cross contamination, and limiting activities she can participate in that do not include one of her parents. All of the precautions are put into place to make sure she doesn’t accidentally ingest her arch enemy.
According to Food Allergy Research & Education organization, “A food allergy is an overreaction of the immune system to a specific food protein.” Many people confuse a dairy allergy with that of lactose intolerance. The difference is that those who are lactose intolerant aren’t at a risk of losing their lives. WEAU News in Wisconsin recently did a news broadcast on lactose intolerance. The broadcast started out with, “Virtually everyone is either directly affected by lactose intolerance, or knows someone who is. It’s a common problem, but one too many people are confused about, incorrectly thinking it’s an allergy.” This confusion has made it more difficult with those of a true dairy allergy to make their needs known in public. Slight cross contamination doesn’t concern the kitchen staff when they think the customer will only end up with mild stomach discomfort.
This common confusion is a regular occurrence and makes the holidays more difficult than the regular day to day struggles with a food allergy.
I want to walk you through our evening of trick-or-treating with my 3 year old daughter.
Dressed as a bat with a tutu and amazing wings, we headed to a kid friendly neighborhood. The first house we hit was a friend. This friend had two separate candy bowls. One bowl was orange for potential allergy candy and one was teal to represent dairy and peanut free candy.
(About a month before Halloween I began to hear about a teal pumpkin initiative. The idea is that anyone who has a teal pumpkin on their porch for Halloween will be handing out allergy friendly things for Halloween. This idea is mainly for non-food treats, however, I have a friend who used a teal bowl to differentiate treats that were dairy and peanut allergy free. One in 12 children have food allergies according to a report from Bay News 9. This means that 1 in every 12 decorated youngins that approach your doorstep on Halloween may potentially not be able to consume the treat you are freely giving.)
My daughter was thrilled to know that what she got from them was going to be safe for her to eat. As we continued along, because it was dark, my daughter was unaware of certain candies that were placed in her bucket. An exciting evening of “trick-or-treat” and “thank you” and “Happy Halloween” exclaimed by a smiling 3 year old. At another house down the way my daughter was instructed to pick her own candy from the bowl to which she said, “What one has no milk in it?” The woman paused, looked at her bowl of candy and said “None of them.” My daughter then proceeded to put the candy she picked up back in the bowl. To that I told her that Mommy and Daddy would trade her something for the candy she couldn’t eat. Fortunately we weren’t faced with extreme sadness and disappointment as she realized she couldn’t have that candy. It was just a fact and she faced it. She sure does seem to be quite a grown 3 year old because of this dairy allergy.
A little further down the road there was a family outside handing out candy. The gentleman looked in his bowl and picked out a piece of chocolate and said, “I’m going to give you chocolate because all little girls love chocolate.” To this my daughter replied while shaking her head no, “I’m allergic to chocolate.” and she proceeded to try to hand him back the candy. He didn’t believe her until I stepped in and confirmed that what my 3 year old was saying was in fact true. After discussing her dairy allergy for a couple minutes he eventually traded her chocolate for some skittles. Again further down the road we approached a house with a bowl full of Tootsie Rolls and Tootsie Pops. The father grabbed a big handful and put it in my daughters bucket. When a Tootsie Pop fell on the ground my daughter picked it up with the biggest look of surprise and astonishment on her face I had ever seen. I was worried that I might have to tell her that should wouldn’t be able to eat that pop because of the dairy in it. My worry was for naught however, because my daughter proceeded to tell me with her jaw dropped that she couldn’t have that because there was milk in it. Her jaw was dropped in the astonishment that someone was trying to give her something that would hurt her.
I learned a few things from my daughter that night.
1. My daughter knows more about what she can and cannot consume than I realized.
2. My little 3 year old has been forced to grow a bit older a bit sooner because of this dairy allergy.
3. She can still have fun even when she knows that certain things will still be taken away from her.
The above picture is her loot of candy she got that evening. As you can see from the proceding photo, she is lit up with the excitement of all the candy she worked hard to acquire.
This is the look on her face when she realizes that the candy now in front of her is Rosie-safe. My family will participate in the teal pumpkin initiative in honor of my daughter. Even if my daughter outgrows her allergy, there will still be children with allergies. It is important to have them feel like they belong. My friend with the teal bowl said that later in the evening an older boy came up and when he saw her bowl his face beamed with excitement. His mother wanted to take a picture and also thanked my friend and explained that her son has a peanut allergy.
It doesn’t take much to provide a few non-food items to hand out on Halloween. This will allow all “kids to just be kids.” To put a few things aside in addition to the regular candy will put a smile on not just the child’s face, but the face of their parents as well. It is nice to know that others care about making the holiday intended for children exactly that, for all children. It isn’t a matter of changing the holiday, but making it more inclusive. With the preparation of the parents and the desire to be understanding from those outside of the family Halloween and other holidays can be deemed successful and children can truly experience wonderful aspects of childhood.
We, as parents, had already done many things to prepare Rosie (my daughter) from the disappointment that comes from not being able to consume something that looks yummy and exciting that other are enjoying. This preparation includes discussing with her things that she can or cannot eat (the things she can eat are Rosie-safe), providing alternatives at activities when there is nothing she can safely consume, or offering alternatives when we get home from an activity. I feel as though this preparation as a parent has allowed my child to better enjoy the holidays (or even everyday) without extreme bouts of sadness. But will what we have done be enough to have a successful Halloween? Is there more that can be done to make the holiday time more inclusive? What about when my daughter becomes of age to enter the school system?
I am dreading the day when I must leave my child in the hands of capable individuals who don’t live with her allergy every day. I am aware of how easy it can be to make a mistake that leads to hives of the face or a dose of Benadryl to bring down the swelling. I fear the mistakes that can be made in my absence. And yet, the inevitable will come, and my child will be sent into the wilderness to fend for herself. It is already a sad day when your own flesh and blood touches an unfamiliar food and exclaims, “I touch it and I not die!”
As my daughter quickly approaches the age to enter the world of education I begin to fear more of the realities of food allergies. Some possible interactions with food allergies can include birthday celebrations, bribery from teachers for good behavior or hard work, sharing lunches in the cafeteria, cross contamination in preparation of school lunches in the cafeteria kitchen, and lack of regular hand washing routines. The following two minute video is an example of one student who frequently encounters peanuts, which he is highly allergic to, at school. The parents are in turn “calling for a change” within the school. Sometimes these changes can be overwhelming and out of the range of possibilities for schools to adhere to; but with the assistance of the parents of those with allergies and the school administration we can meet in the middle.
Many are fighting for the removal of allergens from the classroom. While this is a noble cause and warranted on many different levels, I feel as though some of this is fairly impossible. Airborne allergens like tree nuts and peanuts are more likely to get reactions. Banning such product from schools is needed. If this cannot be done, perhaps having a safe lunchroom where known allergens are not allowed for those individuals who are allergic to the school lunches and those brought from home with allergens. I feel as though removing some of the other allergens completely from school is slightly farfetched. I simply cannot require, nor would I want to impose upon others to intently read all ingredient labels on behalf of my individual child. There are ways that I can provide treats and safe food for my child to consume without placing that burden on others. I can understand the worry and concern and desire to do so, however, I can also appreciate the reality of trying to run a school with hundreds of students who all have different needs. This battle has waged for many years and will wage for many years to come.
Despite personal and school preparation, as noted in the news broadcast, an interaction with the opposing force (food allergen) is still possible. Fortunately, for parents like myself, these interactions have in turn provided great guidelines and suggestions on how to protect my offspring while they fend for themselves in schools. Many of the important things include lots of preparation prior to the first day of school. The parenting website The Stir has recently published some of these great ideas.
1. Get allergy testing for your child if new concerns have arisen
2. Familiarize yourself with the allergy protocols of the school
3. Prepare questions to ask the faculty
4. Create and submit an action plan in the event of an allergen exposure
5. Discuss medications with the school and be sure to provide any medications they may need
6. Teach your child about some of the things they can do to be safe in school
7. Make sure your child knows what to do if a reaction occurs
The CDC has also offered suggestions for the school itself in order to protect students with food allergies.
• Avoid using foods identified as allergens in the classroom
• Train staff to use epinephrine injectors (EpiPens)
• Make sure students who have EpiPens have quick and easy access to them
• Make sure students with food allergies are not excluded from activities
• Consider designating allergen-free zones
• Use non-food incentives for prizes, gifts, and awards
These guidelines are great for students of all ages. Every precaution should be used but in varying degrees per the age of the student.
As of October 2013, 27 different states have put laws in place to keep EpiPens on hand and 47 states allow staff and school nurses to administer the EpiPens. Time is of the essence in incidences of allergic reactions. The sooner epinephrine is administered when airways close up, the great the possibility of survival. Michigan is one of many of the states that have put such laws into place. The federal government is also aware of the great risk that exists for those with asthma and allergies in the schools. On November 13, 2013 President Obama signed a law called the School Access to Emergency Epinephrine Act. This has been put in place to encourage all schools to keep the EpiPens and the trained personnel on hand. By doing so schools will in turn receive extra funding.
And yet, how can one protect themselves from encountering food allergies outside of school and holidays?
There are many guides on how to protect yourself from unforeseeable mistakes while living with a food allergy. Sloane Miller from Allergic Girl: Adventures in Living Well with Food Allergies has her own share of food allergies. She has made it her mission to help others learn how to enjoy their own life while outside the safety of their own home. One of her greatest suggestions was to use a chef card. This can be used when dining out in order to easily inform the kitchen staff of your allergy. This laminated card would include anything you are allergic to, including and not limited to the many names that one allergy can have. For example, dairy is also known as whey, casein, milk, butter, butter fat, lactose, and more. This card will then give information to the kitchen staff to be able to accurately identify possible contaminants prior to the preparation of the meal.
Another thing to have ready when partaking of activities outside of the allergy bubble would be others who are aware of your needs. It is important to inform someone of your allergy and how to seek help or medical attention should the need arise. This safety net of people is referred to as a “Team You” by Sloane Miller. Right now my daughter’s team consists of her mother, father, allergist, and a handful of individuals at church.
The moral of this story is that food allergies are real and deserve the attention of everyone around. “It takes a village to raise a child.” Parents can only do so much to care for and protect their children. With others in the community armed with the knowledge of food allergies, their risks, and symptoms, we can stand on the front line and help defend the rising generations from encounters with the opposing force of food allergies.