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Monday, May 9, 2016

Navigating a Social Life with Food Allergies

As I mentioned in my post yesterday, things have changed significantly since my son's food allergy diagnosis.  Having a child alters your social life anyway, but having a child with multiple life-threatening food allergies requires a bit of extra effort and planning on our part (and sometimes on the part of our friends and family) to make sure O is included.  

Many times the safest course of action is to simply turn down invitations to activities that are inherently difficult for us to manage (restaurants, food festivals, carnivals, etc.) In general, think of all the fun stuff you do that revolves around food and assume that unless we've got about a month of lead time to arrange for child care with someone who is trained on O's allergy care and management in our allergen free home, we'll have to politely decline the invitation.

Anyway, here's what we do for the situations that make us leave the safe haven of our home:


Any activity that requires that we leave the house also requires some planning.  Toddlers don't need as much in a diaper bag as babies, but at two-and-a-half, I still carry a fully loaded bag everywhere we go.  It has the basic kid supplies, but it also carries his epinephrine allergy kit, wipes for all surfaces he'll put his hands on, and a full day's worth of snacks.  He might not eat a full day's worth of snacks in one outing, but we don't have the option of eating out if I can't get us home in time for lunch or dinner and if he suddenly decides he's starving, I can't pick up a safe meal for him anywhere. My bag is full of his safe snacks, just in case we end up delayed, lost, stuck in traffic, or lose track of time when we're having fun.

Most Days

Any activity that will have us out of the house during lunch or dinner time means that I've got to pack us all a lunch to eat out. You can see some of the lunches we've packed on my Instagram.  Depending on how long we'll be out, if I'll have access to a microwave, or if I'll be able to refrigerate our food will determine what I can pack.  If we're planning a full day out or to different stops, then I pack us all a lunch and dinner to-go and try to pack things I know taste good at room temperature and don't spoil easily.  If we're doing someplace fun like Disneyland (which is considered an allergy haven for many people thanks to their recent efforts to be inclusive of food allergy families), I pack double the amount of hand wipes and I'm also sure to pack some cookies or a cupcake from Sensitive Sweets so we can have a special treat too.

I avoid my son's allergens when I'm with him.  Part of it is so he doesn't feel like he's missing out on anything, but the bigger reason is that it's easier for me to manage his risk of contact if I'm not eating his allergens either.  If I eat his allergens while he's around, I need to wash my hands and mouth before I can touch him and I need to make sure there are no crumbs left on me anywhere. (Even then, I still worry about trace amounts that may be on my clothes. On those rare days when I eat out without him, the first thing I do when I come home is wash up and change out of my clothes.)   If I skip out on his allergens when we're together it's easier to manage a toddler that might need my help with feeding himself or picking himself up after a tumble.  Plus, this way I'm always open to the spontaneous toddler cuddle when he feels like giving me a big fat gooey kiss right on the lips.


The stress of the holidays is magnified for food-allergy families because of how much food goes hand in hand with every major holiday - Valentine's Day candies, Easter egg hunts, Independence Day barbecues, Halloween trick-or-treating, Thanksgiving... well... everything, and Christmas.  

That said, we don't see a lot of our big extended family any other time of the year except for these big holiday gatherings so we make an effort to show up and see everyone.  Sometimes we'll pack our own meal to eat, and other times we'll eat before hand and just show up to say hi to family.  Even showing up without eating can be nerve wracking as kids go running around eating bread sticks, or trail mix with nuts, or eating scrambled eggs before scrambling to hunt eggs filled with mini Snickers bars.  Most times we camp out in a corner and my husband and I take turns watching the kiddo like a hawk while the other makes the social rounds.

I've also managed to modify many of our family's holiday favorite meals into allergy safe versions. We have our own 100% allergy friendly celebration at home and everyone eats the same food.  It's a lot of work making everything from scratch on your own, but it's 100% worth it.

Special Occasions

Birthday parties, weddings, and other special occasions are another case-by-case situation.  If we can arrange for child care, then O will stay home.  It's safer for him and less stressful for us.  It's sad that he misses out, but it's also not worth the risks.  If it's a child-centered event where it only makes sense for us to go if O is going, then we pack our food and go.  If it's not at someone's house, I'll call ahead and ask about their food policies.  If it's at someone's house, I'll ask them what they have in mind for the menu and plan to pack the same things plus a cupcake or cookie so we don't stick out too much eating our own packed foods. Some friends and family have taken great steps to make sure entire parties are safe for O to be around... I can't even explain how truly and deeply grateful we are for that.  It's not something we've ever asked for, but to be able to let O run around with other kids knowing that the snacks they were just served are free of his allergens is such a huge relief.  For a moment, someone else shares that burden with us and the weight of our responsibilities seems easier to carry for weeks after. 


We do go on vacation!  Even though we're not comfortable flying with O's allergies right now, we hope that we will be when he is older and has a better understanding of what a reaction is.  Camping or remote destinations are also off the table until he's a little older. Before we go on vacation, we locate the nearest 24 hour pharmacy and Emergency Room closest to our hotel. We program those into our GPS and phones. We ask our allergist to give us a paper copy of our epinephrine prescriptions so in case our epi-pens are damaged by heat or lost, we can get a prescription filled on site without a hassle.  We use a Google Spreadsheet to plan ahead and I make a list of every meal I'll need to cook and try to guess on what we'll want for snacks. We locate the nearest Whole Foods or Mother's Market and put a shopping trip on our itinerary.  We still pack about half our food to take with us, since the nature of specialty allergy-safe foods is that it might not be carried at all locations.  Anything we're relying on eating, we pack.  We pack our own condiments, spices, oils and cooking utensils/pans.  

If we can get accommodations with a kitchen, sky's the limit.  If our accommodations don't have a kitchen, I bring a Cool-A-Tron mini fridge and a cooler with dry ice (for freezer foods), and plan out a series of microwaveable meals.  Either way, once we're in the room, we wipe down every surface and check under every bed, table, and nook and cranny to make sure the cleaning staff didn't miss a potential allergen (we usually find something! a cashew under a sofa, a candy wrapper under a bed - so we can't miss this step!) I call ahead and tell the hotel we've got severe food allergies, and they put a microwave on hold for us that I clean once we're in the hotel. This year I may also consider a toaster oven or an electric skillet for cooking, but still need to do some research on what is the safest to use in a hotel room for cooking. The photo of our family's bentos above was actually a meal I cooked during our last vacation for us to eat while we were visiting the zoo. We've even done group vacations with the strict rule that there is no outside food allowed in our room, but everyone is welcome to enjoy the food we've packed and cooked. We make it work!

Spontaneous Outings

Bahahahahahahahahahahahhahahahahahahah. No.  Besides, spontaneity is overrated (my post-food allergy mantra.) 

SO, if it seems like we never go out anymore and we turn down your invitations to do rad things all the're probably somewhat right.  I assume that if you're asking us to hang out with you, it's probably because you like us and we like you, so I have a feeling you already understand why it's tough for us to be at a lot of events.  Please keep inviting us, we'll say no when it just doesn't seem safe for us, but we miss you and when the stars align just right, we'll jump at the opportunity for all three of us to get out and play.

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