What I Wish I Knew: Food Allergy Lessons I've Learned

Patient Expert

Since my son was diagnosed with multiple food allergies six years ago, our lives have changed in many ways. That initial transition period was challenging and I learned a lot from the school of hard knocks.   I really wish I had known more about what to expect, and what is the new normal would be like.  I'm hoping that some of what I've learned might help you to smooth over the rough spots as you get accustomed to life with a child who has food allergies.

Educating Friends, Family and others on Food Allergies

As we adapt to the food allergy world, we forget that in general, people do not "get it" with regard to food allergies.   Even after you begin to educate them, it may take awhile (or all of eternity) for them to comprehend that a trace amount can cause a serious reaction.  You can try different ways to get through to them (i.e. articles, books, videos), but if they're still asking if your peanut allergic child can have a Snickers bar, move on.

My son's first preschool had a policy that parents were to notify the school in advance of any birthday treats so that I could prepare a special treat for my son on those days.   I'll never forget the one day that I arrived a little early to see 15 kids eating a cupcake with sprinkles and an ice cream cup while my son sat with a bag of wheat-free pretzels and a water bottle.  The birthday mom forgot to let me know and my three-year-old boy was left out of the class celebration entirely.

The following year we shopped around for a different preschool.   The director there promised to provide the snacks that were safe for all of the children.  I explained that I didn't think that would be possible since my son had multiple allergies including milk, wheat, egg, peanuts and nuts.   She replied, "It's only food. We'll make it work. Besides, it will be good for the other kids to try a variety of foods."   Needless to say, I handed over my check immediately.  My son came out of his shell at that school during a wonderful year of inclusion.

Joining the Food Allergy "Club"

The most important thing that I wish I knew is that the "new normal" would become normal to me and to our whole family.   But we continue to find new challenges in spite of our adaptation to our "allergy normal" routine.  We ship boxes of foods to our hotel when we travel and only stay with relatives or at a hotel with a kitchen.   I don't leave the house without snacks, drinks, wipes and a medication bag.  My family could probably survive a long weekend just with the contents of my purse.  We host most holidays in our home and for others, we load up our car like we're caterers. We often bring a second birthday cake to parties as inevitably other children want what my son has.  And I've become a master cake maker who can whip up a wheat/dairy/egg/ and nut-free Taj Mahal cake in 90 minutes if need be

One other thing that I'd wish I'd known is that I would meet so many wonderful allergy moms.   For whatever reason, it usually the mothers in allergy-affected families who handle the additional cooking, baking, holidays, coordinating school plans, training of caregivers and the other responsibilities that come with having a child with food allergies.  In spite of this additional responsibility, many of my friends have chosen to become authors, educators, advocates, and support group leaders on top of everything else.  These extraordinary moms give 110% everyday to keep their kids safe and provide as "normal" a life as possible.  These moms are some of my closest and dearest friends.  Like them, I would not have asked to become a member of this allergy club, but while I'm here, at least I can enjoy the company!