With an eye on the food allergy community as a unique group of consumers since 2008, we're on a quest to find and share ways to continue enjoying the good things in life.

29 November 2020

Food Allergy Fears vs the Children's Museum

Recently, it was announced that Stonewall Kitchen has opened a PB & J Cafe in the Boston Children's Museum building. The focus on serving peanut butter sandwiches at a cafe connected to a children’s museum is admittedly a bit odd. As the mother of a son with peanut and nut allergies, I remember how everything seemed potentially dangerous--a source of potential peanut or nut allergens--for years. When you have seen your child experience a life threatening reaction to a food, fear is a pretty normal response. That, and the desire to never allow it to happen again.

A few things can counter that fear. I believe the most important and most powerful weapon against fear is knowledge. For the great majority of people managing food allergies, avoiding ingestion is enough to prevent a serious or life threatening reaction. News articles about horrific reactions and tragedies attract much more attention than stories of millions of people with food allergies living blessedly uneventful, ordinary lives. It is those horror stories--which are the exception, thankfully--that can often dominate a caring adult’s thoughts when caring for a young child with food allergies. It’s very difficult to tame those fears by relying on science and statistically proven information. One cannot help but wonder, “What if my child is one of the unlucky ones?” “What if he is in that statistically small number that doesn’t fit the typical?” I know it's very difficult to shake that fear of that small possibility, no matter how small and how unlikely it is.

The truth is, a small number of people do have reactions to skin contact with their allergen. My son does. Thankfully, out of that small number of people, an even smaller number have anaphylactic reactions due to skin contact, and that’s because the allergen literally has to get beneath one’s skin or enter a mucous membrane, such as the nose or eyes (or mouth!). When in public, it’s wise to wash your hands frequently or if that’s not possible, carry wipes to wipe your hands clean. I remember how nerve-wracking it was to go anywhere with a small child who has food allergies. Keeping a child's hands away from his or her eyes, nose and mouth has a very different sort of urgency about it when it comes to food allergies, but the important thing to know is that it is do-able. It is manageable.

An even smaller number of people can experience reactions to airborne exposure. These are all possibilities, but the numbers show that the great majority of people can avoid life threatening reactions by avoiding ingestion. Of course, I would be remiss not to acknowledge that sometimes despite our vigilance and our very best efforts, reactions can happen. But out of that 32 million people with food allergies in the U.S., the great majority are able to travel and visit all sorts of places--amusement parks, zoos, museums, theaters, etc. It is not only unhelpful to imply this is not possible, it is inaccurate. The presence of one’s allergen does not mean a building or a museum or an amusement park or other venue is necessarily unsafe and off-limits, and needs altering to eliminate that allergen.

The fact that Disneyworld sells delicious peanut brittle on Main Street does not mean Disneyworld is not inclusive. Disney actually has Epi-pens on site, which is very appreciated by those managing anaphylactic allergies, and has other food allergy friendly options at their restaurants. The fact that the Boston Children’s Museum building now leases space to a Stonewall Kitchen cafe specializing in PB & J sandwiches does not mean it is not inclusive. This opening of this cafe, however, does provide an excellent opportunity for the Boston Children’s Museum to explicitly do something to support children with peanut allergy and other food allergies. I mention peanut allergy specifically since the PB & J sandwiches are obviously a concern for anyone managing peanut allergy. Rather than asking that the peanut butter sandwiches be eliminated, I would like to see Stonewall Kitchen offer some options on their menu for those with peanut allergy, milk allergy, and other food allergies and restrictions (gluten-free, etc.). Likewise, I would like the Boston Children’s Museum to partner or collaborate with the New England Chapter of the Asthma and Allergy Foundation of America, to provide some educational material about food allergies and how to manage them in public near the cafe and also the first floor lunchroom. It could be a small exhibit or display to support and educate those managing food allergies and their peers.

This cafe opening is yet another reminder that we need to empower children with food allergies as early as possible about how to manage their food allergies away from home. We need to support and educate their parents too. Families have been eating peanut butter sandwiches and all sorts of other foods in the first floor lunchroom for years. The risk of tiny peanut butter coated fingers touching exhibits in the museum has always been there. It’s there at Boston’s Museum of Science too. Yes, a cafe serving peanut butter sandwiches certainly highlights the concern about those little peanut butter covered fingers, but this risk has always been there. Thankfully, there are things we can do to protect our children, things that are proven to work. It's easy to let fear overtake you and to let yourself feel powerless, helpless. Don't forget, you have so much power--wash hands, use wipes, bring your own food/snacks, and always carry your epinephrine autoinjectors.

The photo I have included with this post is a photo of the package for my son's Auvi-Qs--which he never leaves the house without, just like his shoes!--and my copy of Sloane Miller's "allergic girl: adventures in living well with food allergies", published by John Wiley & Sons in 2011. I included Sloane's book because she really helped me see what life can be like for an adult with food allergies when my son was young, and the world seemed so overwhelmingly full of potential food allergy risks. How can we prevent our children with food allergies from growing up to be nervous, frightened adults? That's not what we want for them and it does not have to be that way. I urge you to read Sloane's book. So much of it applies to children too. Here is a small excerpt from pages 4 and 5:

"To avoid severe allergic reactions, millions of adults opt out of life's pleasures: kissing, dinner dates, social engagements, holidays and other celebrations, business lunches, and traveling to far-flung destinations--in other words, anywhere that food is involved, and that's pretty much everywhere. Even when they opt in, food allergic adults are often actively fearful, anxious, or nervous. They can also feel ashamed, embarrassed, marginalized, isolated, lonely and different because of their dietary restrictions. They often suffer in silence.

That was me until a fear years ago." 

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