Today, Amy continues sharing her family’s journey and how their way of life has been impacted by her son’s severe peanut allergy. Yesterday, she helped us understand the reality of a food allergy diagnosis. You can read Part 1 here.
Managing Food Allergies: A Way of Life
There are highs and lows.
You have to protect your child, while also teaching him how to manage his dietary restrictions and to advocate for himself. My son has Celiac Disease, in addition to his food allergies. The allergens we have to avoid are peanuts, dairy, tree nuts, and gluten. As a family, whenever we have a meal that contains any gluten (we don’t do meals with peanuts or tree nuts), I prepare my son’s plate first to avoid any cross-contact with gluten.
Once while on vacation with family, I set his plate on the table before the adults began making their plates. In the midst of the chaos, he started running in circles around the kitchen. When I got close enough to hear over everything else going on, he was saying, “I can’t eat that hot dog bun! I can’t eat that hot dog bun!”
Inside I was breathing a sigh of relief because he gets it. He knows that he has to make sure his food is safe. You celebrate the successes, but at the same time you mourn the loss of innocence. Hearing those panicked words was like a kick in the gut because my sweet child, who was just five at the time, was afraid of a hot dog bun.
There is a learning curve.
Shortly after his diagnosis, I made the rookie mistake of showing up at a birthday party with no food for my child. As my kids wandered off to play, I walked to the kitchen to ask the hostess about any peanut products in the party food. The look on her face mirrored the horror I felt when she told me there were nutter butters on the cupcakes. I didn’t make that mistake again. We learned to plan for everything. We now go nowhere without food for my son.
I’ve learned about things that would never have been on the radar, pre-diagnosis. According to the Quest Peanut Component Panel, “Over 13 allergenic components have been identified in peanuts,” and “ara h2 is the one most often associated with severe reactions.” When my son was tested and it was confirmed that he is allergic to ara h2, I was an emotional wreck for a week. Then, I realized this didn’t change anything. It only confirmed that our family’s strategy for managing his allergy is exactly as it needs to be.
There is serious emotional stress.
You develop a thick skin, at least in front of your child. You learn when to advocate and when to bite your tongue. You are constantly weighing the risk to your child versus his need to just be a kid. Your local Christmas parade, a fun time for everyone else, is mentally exhausting. You summon the courage to prepare and put on a carefree face, but inside you just want to stay at home and avoid the whole thing.
This past year my husband was on duty, so I was flying solo with my boys for the Christmas parade in the morning AND a birthday party in the afternoon. Of course, I packed our EpiPens. We don’t go anywhere without them. I also packed snacks and drinks, because my son could not drink the free hot chocolate being served at the parade. He also could not eat 95% of the candy thrown out.
My boys wanted to grab candy too, just like all of the other kids. So I fought the protective urge to tell them we couldn’t; to tell them that the Snickers and Butterfingers were smashing open when they hit the street and it just wasn’t safe.
I let my youngest, non-allergic son collect whatever candy was thrown his way, but had him stick the peanut candies in the bags of friends we were sitting with. When a peanut candy landed near my allergic child, I told him, “That piece has nuts so let someone else get it.” He did great, no complaints — he knew what he needed to do to have fun AND BE SAFE.
There are people who JUST DON’T GET IT.
Then, I heard the mocking comment, “Oh, don’t touch the peanuts!” Inside I was BOILING, but my sweet son did not hear. He was out collecting all the Starburst and Dum-Dums he could find. So I bit my tongue and pretended I hadn’t heard either.
We have had those conversations with my son before, the ones about people who just don’t get it. The people who have not seen their child’s face swell up from getting a bit of their allergen in their eye. The people that just don’t grasp the harsh reality that a piece of candy could put my child in his grave. I did not want to have THAT conversation AGAIN at the Christmas parade. I wanted my son to have fun just like everyone else. Still, the comment nagged at me most of the morning.
There is compartmentalizing and moving on.
After the parade, we headed home for a quick lunch, then on to the birthday party. Our sweet friend had checked with me beforehand to make sure she had some snacks my son would be able to eat. Of course, I brought his cupcake and some other snacks, just in case. The boys had a great time, and with no peanut-containing food, I was able to relax a bit.
Still, for most food allergy moms, a parade where your child’s poison is repeatedly being thrown at him, followed by a birthday party, makes for a taxing day. Once home, I breathed a sigh of relief as I poured myself a larger-than-usual glass of wine. I sat down feeling thankful to be home, in our safe environment, where I could truly relax. I had done it. I had flown solo for a day of navigating food allergy minefields. My boys had enjoyed the day, AND we had avoided an allergic reaction.
There is exhaustion and second-guessing.
I was tired; and there it was again, that mocking comment … “Oh, don’t touch the peanuts!” In comes the mom guilt. I should have said something. I should have tried to raise awareness. But, no … then my son would have heard, and his day would have been tainted. His fun would have been overshadowed by his food allergies. I would have had to explain to him, again, that not all people understand food allergies. That some people handle the unknown by joking about it. That no one who understood would joke about his medical condition (that we did not choose, and that COULD KILL HIM). I have told this lie before, and I would rather not have to tell it again to my eight year old. Yes, in the moment, I made the right decision for my son.
So now I write…
…to share our story and to raise awareness because I know there are people who truly don’t understand the reality and WOULD CARE if they did;
and, to say THANK YOU to:
- the family members who get it.
- the food allergy moms I have met along the way, whether in person or on Facebook, for sharing their experiences and support in this journey.
- the preschool room mom who responded, “I would be the same way”, when I said my son had to avoid items labeled “made in a facility with peanuts” because it’s just not worth the risk.
- the mom I didn’t know at a birthday party who came over to me afterward and said, “I just wanted to tell you, everything you do for your child with an allergy is awesome.”
- the friends who had special Halloween bags set aside for my boys.
- the sweet friend who wanted to help me out and got creative by bringing my boys buckets of activities to entertain them, rather than a meal that would just cause more stress.
These things may seem small, but to a food allergy mom, these moments of empathy and understanding mean the world.
http://www.uptodate.com/contents/anaphylaxis-emergency-treatment “Anaphylaxis is a potentially fatal disorder that is under-recognized and under-treated. This may partly be due to failure to appreciate that anaphylaxis is a much broader syndrome than “anaphylactic shock,” and the goal of therapy should be early recognition and treatment with epinephrine to prevent progression to life-threatening respiratory and/or cardiovascular symptoms and signs, including shock.”