A Week at Walt Disney World with Food-Allergic Children

After reading so many positive stories about Walt Disney World by people with food-allergic children, we planned a week’s trip.  For the same cost, we could have done 2 or 3 smaller vacations, but vacationing with food allergies is such a scary ordeal.  There are many encouraging testimonials from those in the FA community and we decided that one safe and wonderful vacation was worth the expense.  We want to add our experience to that long list of food allergy parents who had a safe and amazing trip to Walt Disney World.

Dining out locally with a food-allergic child has been such a negative experience that we almost never do it (aside from Wendy’s or McDonalds).  It is nearly overwhelming to consider eating on a plane or in an airport.  We have worked hard over the last few years to create breakfast, lunch, and dinner menus full of safe and tasty foods.  Going on vacation entails trusting that we can find the same in a dozen or so different restaurants.  We ventured a short vacation last year that involved driving with a cooler loaded with safe food and a stay in a hotel with a full kitchen so we could prepare most of our food.  The one time we ate at a restaurant, we ended up using the Benadryl.

On Disney World’s website we found menus of all of their restaurants, lists of ingredients for many of their commonly served food, and the Special Diets page.  The typical child’s menu includes chicken fingers, hot dog, hamburger, mac and cheese or pizza.  The only option for our son would have been a burger with no bun.  I had read that the chef would come to the table to discuss options, so I looked over each and every adult menu to determine which ones had the greatest potential for substitutes.  We made dinner reservations at four restaurants and we planned to eat at the resort for breakfast and lunch.  We figured that we would see how comfortable we felt before we ventured any further than that.

Through the Special Diets department, we informed Disney of our children’s allergens and gave them our dining reservation information.  They, in turn, passed the information on to the chefs at those restaurants.  Just as we had read, the chef came to our table and discussed our dining options.  In every instance, the chefs prepared safe and wonderful dinners and desserts.  Our son, who is anaphylactic to milk, had his first milk shake (soy) at Hollywood Studios.  He had Rice Dream ice cream with a waffle cone in Magic Kingdom, and he had sorbet with fruit at Epcot.  For breakfast one morning, he had Mickey Mouse-shaped waffles at the resort.  To top it all off, he ate his first-ever donut at BabyCakes NYC in Downtown Disney.  For him, these foods were delicious.  For us, it was a surreal experience.  As if to highlight the point that Disney goes out of its way to cater to food allergies, when we tried to eat breakfast at a Chili’s at the airport, the only thing they could offer our son besides bacon was to toast the bagel we brought in.

Out of extreme precaution (as well as frugality), I had groceries delivered to the resort by We Go Shop.  There are at least two grocery delivery services but this one looked better for us.  I ordered specific foods like Cinnamon and Brown Sugar Kellogg’s Pop Tarts and Thomas’ blueberry bagels and checked the “no substitute” box.  I included a note that we had several allergies to emphasize why I didn’t want substitutes.  The bread that I had checked, however, was not available at the local Wal-Mart, so Amy at We Go Shop substituted another non-diary.  She said she had called a relative of hers with a milk allergy to find an ingredient list which would work.  I was impressed.  With food in the hotel room, we were able to eat quickly, safely, and cheaply for a few meals.

One other bit of preparation was the creation of a chef card.  The list of allergens is on the front and food-preparation safety information and a picture of my child is on the back.  It proved extremely useful when we were brave enough to eat at a counter service restaurant on the last day. 

Not one reaction: no rash, no hives, no swelling, no lethargy, no vomit, no Benadryl, no Epipen.  Just rides, shows, and smiles.  Two very tired children and two very happy parents.

Like most kids, ours absolutely love Halloween. They love carving jack-o-lanterns, they love dressing up and trick or treating, and they LOVE candy. As a constantly-anxious parent of food-allergic children, I planned in advance how I would handle the food at their parties as well as any they received as a reward for their door-to-door begging. For my pre-school child, I had a difficult time communicating with the parent who signed up to bring treats. All communication was done through the A.M. teacher. Even though I only needed to know what the parent was bringing so that I could prepare something similar for my child, there was too much back and forth. The lesson learned is that I need to have direct contact with anyone who is providing food.

Trick or treating was a different ball of wax (or whatever a chocolate-covered nut equivalent to a ball of wax would be.) One idea we had heard of was to have the children bring home all the candy they got, then set out the ones that they couldn’t have for the Nut Fairy to take and replace with some other goodie. This sounded like too much work to me and more than slightly implausible – kind of degrading to the other fairies. My alternative was to buy more than enough safe candy for us to hand out, then use the extra to swap with my children. That way, they wouldn’t feel like they had to give anything up. Thank goodness they’re not allergic to sugar!

I explained the plan to the kids before we headed out into the neighborhood and they seemed to get it. We also set the rule that no food was to be eaten until we got home. As a further precaution, I took the epipen with us. As soon as we got to the first door, however, the candy-swap plan went out the window. Quite reasonably, the kids looked through the candy distributor’s selection to tell them what they could have. On what seemed to be several occasions, I heard my son say “I can’t have that.” Then he turned and walked away. The first few times this happened, I told him to just take what was offered and reminded him that we would swap it out when we got home. He said, “No.”

I worried that as the night went on, he would get angrier at his allergies and feel more and more rejected. Fortunately, it didn’t seem to bother him. He just ran turned away from the door and ran on to the next one. I guess the thrill of dressing as a cowboy and going around the neighborhood at night surrounded by vampires, princesses, and superheroes was more important than the candy. For that, I am grateful.

As for my 8-year-old daughter, her only concern was peanuts. When she didn’t have an alternative, she took the nut candy and later traded it with a friend that went with us.

Two weeks later, the cowboy and the witch are still working on the candy they did get. My hope is that their memories will be of dressing up, parading, and running around with their friends and not of the food that they couldn’t have.

This title might bring to mind an all-too-typical trip to the grocery store with a toddler, but I was the one who had the meltdown. Our favorite bread, Oroweat’s Whole Grain 100% Whole Wheat, added milk as an ingredient. Out of the 100 or so bread options, this was the only dairy-free sliced bread that was tasty enough for my kids and healthy enough for the parents. This had been such a reliable standard for us that I haven’t felt the need to read the label for quite some time. It was even on my son’s “Safe Food” list. Recently, however, I read on FAAN’s website not to make such a list and to check labels every time since manufacturers change their ingredients. With that sound advice on my mind I flipped the Oroweat loaf over and what I saw nearly floored me: whey and nonfat milk in bold, black letters at the end of the ingredient list.

I’m used to checking labels and the frequent disappointment that comes with that necessary task but this was too much. A healthy, allergen-free food that everyone likes is just too hard to come by and this one was now being taken from us with no warning, no bright yellow banner stating, “Now Containing Dairy!” or anything of the like.

After gathering myself and inspecting all other options only to read milk, milk, milk on all of them, I finally found another Oroweat bread: Dutch Country 100% Whole Wheat. It, by the way, isn’t nearly as tasty. I called Oroweat to complain thinking that they need to hear from their dairy allergic customers. The nice lady at customer service sympathized and promised to pass on my concern to the powers that be. She also sent me coupons for any of their products . . . excluding Dutch Country.

We’ve been looking for books to help our son prepare for preschool. We wanted to increase his awareness, help him become an advocate for himself, and hopefully find a book that his teacher could read to his class to help them understand and be supportive.

Here’s what we got through interlibrary loan and Amazon:

Cody the Allergic Cow by Nicole Smith

This is our favorite of all of the books. Though Cody is just allergic to milk, food-allergy issues like symptoms, being careful about what foods “hide” the allergen, feeling different than non-allergic friends and family members, and having the epi-pen close by are all covered. There are other books in this series that deal with peanuts and nuts. This book is great for my preschooler and it would be great for his teacher to share with the class as well.

The BugaBees: Friends with Food Allergies by Amy Recob

This beautifully illustrated rhyming children’s book features 8 characters with different food allergies. Since my son shares 6 of those, we have plenty of opportunity for discussion about foods to which he is and is not allergic. This book is appropriate for children in the primary grades and would be great for a teacher to share with the class.

The Day I Met the Nuts by Mary Rand Hess

This is a cute book that describes nut allergies from a child’s perspective. He goes through all the emotions: He’s sick, scared, frustrated, he feels different and left out, and eventually he learns how to adapt. This book is appropriate for nut-allergic children of any age.

Food Allergies by Jason Glaser

This is more of a reference book for kids than it is a children’s book. Teachers could effectively use this book to share with a class what food allergies are, what reactions look like, what causes them, etc. This book could be used from preschool through most of the elementary grades.

A Day at the Playground: A Food Allergy Awareness Book for the Young by Tracie Mulari-Schrand

This book is not specific to any particular food allergy. It’s geared toward helping children be aware of food allergens in a play setting. It’s age-appropriate for my 3-year old boy. It is a good cautionary read.

Taking Food Allergies to School by Ellen Weiner (Part of Kim Gosselin’s Special Kids in School Series)

This book is very good at explaining how foods with an allergen make a food-allergic person sick, complete with talk of white blood cells, antibodies, and histamines. This is a great book to read and discuss with my food-allergic 8-year old but not with the 3-year old.

My husband and I both agreed that we wanted to reach out and connect with other families with food allergies.We receive a lot of encouragement, ideas, and moral support by reading blogs of other food allergic families and we felt that we wanted to contribute too. We have two happy and healthy children who are the lights of our lives.They both also happen to have life-threatening food allergies which has dramatically changed the way our family eats.

Our son, age 3, is the most severe of my two food allergic children.He has multiple life-threatening food allergies to dairy, eggs, nuts, poultry, fish, pinto beans, peas, and most likely tropical fruits.He has had one actual anaphylactic reaction after accidentally taking a drink of another child’s cow’s milk.I pray that that never happens again.We avoid eating out because of the possibility of cross-contamination.

His most recent IgE test showed that his allergy levels were actually increasing.His peanut test is actually over 100 which is off the chart.My husband and I were feeling pretty down about this and I guess that’s why we wanted to reach out to others.

We have known that our son was a food allergic child since he was about 7 months old.We had him tested because he was having severe eczema and rashes.We had also noticed how his eczema would flare up after eating certain baby foods. At Thanksgiving when he was 8 months old, after eating turkey, his cheeks became bright red and rough.We didn’t know at that time that the turkey was bothering him.We actually had family photographs taken and the photographer asked if I’d like to have her retouch the photograph to take the redness out of my little guy’s cheeks!

My daughter, age 8, also has life-threatening food allergies to nuts and sesame.Honestly, I sometimes forget about the seriousness of her allergies because compared to her brother, she’s a breeze!It’s fairly easy to avoid nuts and sesame; however, we have to be vigilant about making sure she never eats them.We first discovered her food allergies when she was still very little.My husband and I were eating take-out Chinese cashew chicken.I gave her a cashew to eat.Her reaction was delayed by about an hour but she began projectile vomiting and broke out in hives.Her pediatrician said it was most likely an allergic reaction and that’s what we chalked it up to.It didn’t feel like a huge deal… so we wouldn’t eat cashews anymore, right?

Then when she was two and a half, she ate an ice cream cone with a few peanut sprinkles on the top and then we went swimming.At the pool, she started having chills and as I was holding her, I noticed her eyes and lips swelling!We rushed home and gave her Benadryl, and she was better.

Looking back, we were so naïve about dealing with food allergies.My daughter was our first experience with it; however, the extensiveness of my son’s allergies has forced us to become very well educated in the food allergy department.My goal is to share my experiences, ideas, support, and recipes for others who find themselves in the same situation.Thanks for reading!