In a typical conversation about my children's food allergies and eosinophilic esophagitis, I stress that they are just like their peers. They may not be able to eat or (in Paulie's case) even be near certain foods, but they can still do everything else that a typical child can do! They love going to preschool and playing with their friends. Paulie tells elaborate stories, and he sings or hums all day long. Norman makes spectacular sound effects, especially those related to cars and other motorized vehicles. They run around like wild animals and make me wonder where they get the energy! However, this is not a typical conversation and my boys could not safely engage in many typical childhood experiences without my pre-planning and behind the scenes work.
Every aspect of life is affected by the boys' food allergies, and that is the case for every member of our family. We no longer attend the large holiday gatherings that we once loved. The stress of knowing that similar events have led to the worst of Paulie's allergic reactions overshadows the joy of the celebration. Instead, we gather in smaller groups or remain at home to celebrate alone, scheduling family visits for quieter times. I look back at the Thanksgiving dinners, Christmas parties and Easter brunches of my own childhood and I hurt for my children, knowing what they are missing!
Planning for school is an ongoing challenge. Paulie and Norman both have extensive 504 plans on file with the school that lay out the accommodations that are needed. I work with the teachers and staff every step of the way to ensure that the boys are not inadvertently exposed to allergens while at school. Every item used in their classroom must be inspected and approved. This includes soap and cleaning supplies. Teachers know that they cannot use food or food packaging in lessons and crafts. However, allergens can be found almostanywhere. For example, paints may contain egg protein and shaving cream (used for tactile lessons) may contain milk. It is my job to communicate with school staff to catch potential exposures before they occur.
Medical appointments are also complicated. It is important that doctors and nurses wash their hands immediately before examining the boys, but not until I have checked the ingredients of the soap. Every new or refilled prescription is a potential problem due to the frequent inclusion of allergens as inactive ingredients.
It is a fine line that I walk with family and friends to prevent allergic reactions while also allowing my children typical life experiences. Every person who takes the time to learn about food allergies and eosinophilic esophagitis is one more person to help us walk that line. As Food Allergy Awareness Week (May 9 - 15) and National Eosinophil Awareness Week (May 16 - 21) approach, please take the time to share your story or mine. Let's work together to raise awareness about food allergies and eosinophilic esophagitis!
- Kendra Tiedemann
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