Food Allergy Advocacy- by my teen daughter with life threatening food allergies

 

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My daughter was diagnosed with severe food allergies when she was 2 years old.   (the kind that require an epi pen and emergency room visit because her throat closes up)  She is allergic to eggs, peanuts, tree nuts and shell fish.

She was asked by the local chapter of the Allergy and Asthma foundation to sit on a panel of doctors, school nurses, and specialists to give her student perspective.

The purpose of the panel is to provide families with children with food allergies a chance to hear from professionals (and Sammie 🙂 ) how to make sure their kids are safe at school.  She gave a speech and they did a Q and A at the end.

So- I’d like to introduce our little Food Allergy Advocate- and the speech she gave.

Sammieblog

allergyasthma

Good evening, my name is Sammie and I am 14 years old and a freshman in high school. I was asked to talk to you about how I cope with life threatening allergies to eggs, peanuts, and tree nuts.

Diagnosis

I was first diagnosed with food allergies when I was 2 years old. A friend of my mom’s brought over Easter cookies with royal icing on them.  Since royal icing is egg white based I reacted almost immediately.  

Since then I have been trained by my parents to ensure my safety as much as possible. My mom taught me from a very young age to speak up for myself.  

For example, I often had to ask “Can you read me the food label?”  Or “Can I see the label?”

I learned how to understand food labels before I could read books!

Elementary School

No Eggs, No Nuts (1)In elementary school I had a few memorable moments. One was the peanut free lunch table which is a great way to keep a child safe at lunch. This system worked for me throughout my whole time there. Even though you might think it was hard being isolated from my peers, I loved it!

Everyone at my school thought it was cool to sit at the peanut free table and everyone wanted to be invited to sit with me. I was allowed to invite one friend to sit with me at the lunch table as long as they bought their lunch so that I knew that it was at least peanut free. Although this system was great, it wasn’t egg free so I still had to be careful.

Classroom Accommodations

In elementary school I felt comfortable with the nurses and safe in the classroom. These are some of the things that were done to ensure this feeling:

  1. I kept a safe snack in the cupboard for when kids brought birthday treats
  2. The classrooms were peanut free
  3. We always had a plan for field trips. Typically my mom would be informed about where we were going and what was going to happen so we could plan accordingly. Most of the time the plan was as simple as me bringing my lunch and having a cleaned, peanut free place to sit with a few friends.
  4. There were also wipes in the classroom to clear contaminated surfaces as needed.

The Bus

We also had to have a plan for the bus because while there was a no eating rule, in my experience it was often ignored. I had to make sure that I had access to medicine if it was needed which is something I definitely recommend if you have a child with food allergies. They should always have access to the necessary medicine.

Ability Awareness Week

In 5th grade I had the opportunity to teach the kindergartners about my food allergies for our ability awareness week.  The nurse and I lead a discussion together.  We read Food Allergies and Me by Juniper Skinner, talked about the importance of hand washing, and I was able to answer their questions. This was a great experience and a fond memory from my years in grade school.

Middle School

In middle school I successfully attended 6th grade camp- an outdoor school where we went away for a week- and felt confident and safe with my food. We selected food items from the menu that were safe to eat and filled in the gaps with food brought from home.

In 7th grade my allergies became more sensitive so in response to that the school and my family had to make some changes in how we ensured my safety.

Source: www.mylan.com

One of these things was that I had to change my schedule. At my school when you had to make up a test you had to go into the classroom during lunch.

I had history right after lunch so often there would be traces of peanut butter on the desks and if I touched the contaminated surfaces I would have a mild reaction- my throat would be scratchy, nausea, and my tongue would tingle.  To fix this problem I switched history and P.E. in my schedule so I never had to be in a classroom after lunch.

The second thing we changed was I ate lunch in the principal’s office with some of my friends so I would have a completely peanut free room to eat in.  We called ourselves “the lunch bunch”.  My friends turned a difficult situation into something fun.  I am so grateful for good friends!  

I ended up having a lot of problems in 7th and 8th grade with reactions- my environment had to be protected more because my food allergies got more severe.  I was in the ER frequently and I even had to stay over night once because the reaction would come back after the epi pen wore off and my throat would close up. I had 3 injections that day of epinephrine.

What helped me adjust 

My mom made up some phrases to help me remember what I had to do to stay safe.

Silly Mom Phrases

 Meaning- if I couldn’t read the label I couldn’t eat the food.

Sometimes I get discouraged about my allergies and how different it makes me from my peers. My mom has been an inspiration to me. She consoles me with things she has learned, but through simple, easy-to-remember phrases.

Such as “food is fuel” for when I’m discouraged about all of the food I can’t eat.

FOOD IS FUEL

She also helps me remember that the delicious-looking cake I can’t have simply is “not my food”.

It's Just

High School

This year I’m a freshman in high school.  I’m going through the process of informing my new teachers about my needs and learning to be safe in a new environment where kids are allowed to eat any time of day with almost no restrictions. Lunch, in particular, has been a learning curve, but my friends help me spot peanuts or tree nuts close by.

IMG_0933High School has been scary sometimes for me and my parents because of potential food contact in hallways, classrooms, stair railings, and other surfaces. I feel like I need to learn to deal with this anxiety for my future though since I often won’t be able to control my environment.  

We recently had my 504 medical plan and I was able to articulate some of my concerns.  I highly encourage any family to have their child in those meeting rooms.  Just seeing all of the adults at the table from counselors and nurses to the building and district administration helped me feel more secure.

What I’ve learned from having life threatening food allergies

To conclude I would like to share with you how the responsibility that comes with allergies has made me who I am and the skills I have gained through my struggles.

I have noticed that I am able to approach administrators and other adults comfortably if I ever need to talk to them. I also find it easier than most people my age to stand up for myself or others and I think this is because I have been practicing this my whole life.

My food allergies have provided a way for me to learn advocacy and gain confidence in other areas of my life. I try not to let allergies get in the way of activities I love- including choir, swim team and church activities.

Most importantly, allergies help give me perspective on what is really important in life.  

I am so grateful for this opportunity to share my story!

If you have a kiddo with life threatening food allergies who would like to chat about their experiences I’d love to hear from you!  Shoot my mom an email at birdwithalist@gmail.com and I’ll personally respond.

Sammie

Do you have a kiddo with food allergies?  How do you help keep them safe at school?

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