Amazing how far peanut allergy oral immunotherapy and other severe food allergy treatments have come in the 13 years since Bo was first diagnosed with a severe peanut allergy and was enrolled in a groundbreaking treatment and study program at Arkansas Children's hospital as patient #2!
Bo has lived a normal life since completing his oral immunotherapy program at age 10 by successfully passing a food challenge. In fact, in the last year of the 5 year study he was eating 34 peanut butter M&Ms everyday to build and maintain his desensitization to peanuts.
Sounds cool to eat candy to cure a deadly peanut allergy but not an easy thing to do to eat that much every day for such a long period of time. But in the end all the time and effort were worth his life changing success!
Today the U.S. Food and Drug Administration approved Palforzia [Peanut (Arachis hypogaea) Allergen Powder-dnfp] to mitigate allergic reactions, including anaphylaxis, that may occur with accidental exposure to peanuts. Treatment with Palforzia may be initiated in individuals ages 4 through 17 years with a confirmed diagnosis of peanut allergy and may be continued in individuals 4 years of age and older. Those who take Palforzia must continue to avoid peanuts in their diets.
Bo's daily peanut dosage for his peanut allergy treatment study is now equivalent to a kernal of a peanut.
Halloween Fun Despite a Food Allergy Some of our readers have asked how we deal with Halloween considering Bo's life threatening peanut allergy. Some parents of food allergic children no longer let them Trick-or-Treat door-to-door. We certainly understand that thinking because it really is scary with that much uncontrolled exposure to food and candy for a food allergic child during Halloween.
So this year, we took advantage of the fact Halloween was on a Friday and sponsored a block party at our house. We rented a space walk for kids age 5 and up, a neighbor set-up their smaller inflatable for the little kids and we had a hay ride as well. Everyone from the block brought a dish or drinks over to our house and the kids went door-to-door trick-or-treating in groups. We had over 100 people at the house all night, it was a blast!
To accomodate Bo's peanut allergy, we took the following steps for a safe Halloween:
We fed Bo dinner before the party started
A few neighbors made peanut free treats that were specially marked and put out in a seperate food area
Bo went trick-or-treating with the other kids but allowed the candy to be put in his bag (any type candy was OK). Then, we he got home we traded his bag of collected candy for a bag his mom had made with an assortment of safe candy including Skittles, Starburst, Blow Pops, Air Heads, etc. Bo's friends thought it was cool to have his haul of candy divided up among them! Be sure to check out Bo's updated peanut free safe food list.
Sunday at Hollywood Studios (formerly MGM), I ate at the Backlot Express for lunch. I had peanut free chicken nuggets, french fries and grapes from the kid's menu. It was all pretty good. What a cool day, my cousin and I got picked from the audience to undergo Jedi Knight training! We got to go on-stage with other kids...Jedis... and we finished our training by dueling light sabers with Darth Vader...yes THE Darth Vader! Totally wicked!
Sunday night we had dinner reservations at Tony's Town Square in Magic Kingdom. Chef Eric came to our table before the meal and explained what I could safely eat on the menu despite my peanut allergy. Chef Eric explained that in this Italian restaurant, all the food on the menu was peanut safe, except for the breads, because they were manaufactured in a plant that also processed nut products, and there was the same cross-contamination risk with most of the desserts. I wanted cheese pizza and a taste of Dad's chicken parmigana which Chef Eric said was OK. I was sad about missing dessert so he made me a peanut safe sundae made of Edy's vanilla ice cream with chocolate sauce and Mickey sprinkles! Everyone really liked their food at Tony's.
Monday I ate cheese pizza for lunch at Pizzafari in Animal Kingdom, it was OK. For dinner, I ate a good cheeseburger with french fries and apple slices at the ABC Commissary in Hollywood Studios (formerly MGM). So far, all the food in the Disney parks has been good and with the help from the Disney Park Special Diets Group, and the Disney chefs, Mom and Dad have not been all stressed out about eating out!
Greetings from Disney World in Orlando. We are staying at the Beach Club Villas because they have a fully equipped kitchen and fridge so we can cook some of our own meals. Our villa room is huge and the hotel has it's own beach, lakes and even a pool with a pirate ship! How cool is that? Today the weather was awesome and my favorite rides at Magic Kingdom wereThunder Mountain and Buzz Lightyear!
Mom is a travel agent, so she had made all our dinner reservations in advance. Then she contacted Brenda Bennett at Magic Kingdom Foods after reading on PeanutAllergy.com Discussion Boards about how she helps people with peanut allergies and other food allergies plan safe meals while at the Disney parks. (see Disney Park Special Diets Contact Info at the bottom of this post).
Tonight we had a delicious peanut free family-style dinner at Liberty Tree Tavern with our friends and a bunch of Disney characters. Chef Rob came to our table before the meal and explained what I could eat on the menu that was peanut free. I was glad to hear that all the food on the menu was peanut safe, except for the apple cobbler dessert. Chef Rob suggested Edy's vanilla ice cream for my dessert but Mom asked if he was sure about the Edy's brand. Chef Rob explained how he cooks for about 15 peanut allergic people every day at Disney and that the ice cream and the whole meal would be OK for me to eat. So we all relaxed and had a great dinner. I ate rolls, roast beef, turkey and Edy's vanilla ice cream for dessert and it was all great!
Chef Rob also did something really cool for my friend who had a freak accident yesterday eating a popsicle in the park. My friend had accidentally jammed the stick into the back of his mouth and cut it really bad. When Chef Rob heard that story, he made a special bowl of extra smooth mashed potatoes with extra milk to make it easier for my friend to eat!
Disney chefs rock and go out of their way to take care of kids dining at the park whether they have food allergies or not, plus their food is delicious!
Bo
How to Contact Disney Park Special Diets
Disney's Animal Kingdom Special Diets: [email protected] (407) 938-3288
Disney Hollywood Studios (formerly MGM) Special Diets: [email protected] (407) 560-3551
This weekend I attended two different birthday parties and I did not have any peanut allergy issues with the food because both neighbors checked with my Mom while planning their parties to reduce the risks.
The party food is listed below with my comments:
Birthday Party #1
Pizza from Papa Johns (OK for me)
Blue Bunny ice cream singles (oops she meant to get Blue Bell brand for me, so I just brought my own)
Mardi Gras season traditional King Cake (did not eat because of cross contamination risk from bakery, brought my Mom's cupcakes with a few extra for my friends because they like them too!)
Build Your Own Piza Birthday Party #2 Each kid got to build their very own DeAngelo's personal pizza using the raw ingredients! Mom had met with the kitchen manager at DeAngelo's Pizzeria a few days before the party to make sure it was OK for me. Some of their purchased desserts have nuts and they do use some nuts in their salads, but since those foods and activities take place in a separate area of the kitchen; plus the fact that peanuts are my true food allergen, the build a pizza party was determined to be low risk for me.
DeAngelo's pizza (OK for me, mine was a cheese only masterpiece made by my very own hands!)
Blue Bell ice cream singles (OK for me)
Cookie cake from a local bakery (did not eat because of cross contamination risk from bakery, brought Mom's safe cupcakes)
We know that birthday parties can be a source of anxiety for families with a food allergy but thanks to considerate friends, Mom's diligence and cupcakes, combined with our routine of always bringing my personal peanut allergy safe cooler... life is truly a PARTY!
UPDATE: 6/29/09 This update is provided in response to some comments about our original Chick-fil-A post. Bo has eaten numerous times at Chick-fil-A's in many different cities both before being diagnosed with a peanut allergy and since his diagnosis, without having a peanut allergy reaction. For the record, he has been tested twice within the last two years and both times had a RAST score of over 100.
Prior to being diagnosed with a peanut allergy, I loved to eat and play at Chick-fil-A. However, we had stopped eating there immediately after I was diagnosed with a severe peanut allergy. One of the reasons my dad had trouble coming to grips with my peanut allergy diagnosis early on, was because he knew that I had never gotten sick after eating at Chick-fil-A even though they use peanut oil. The Chick-fil-A web site allergen info states that "all breaded chicken products and Chick-fil-A Waffle Potato Fries are cooked in 100% pure peanut oil.
Then last month, while talking with several other parents of peanut allergic children participating in the peanut allergy treatment research study at Arkansas Children's Hospital, we learned that their peanut allergic kids were eating at Chick-fil-A without having allergic reactions. What we learned about Chick-fil-A after talking to the doctors and nurses at Arkansas Children's Hospital and to a manager of a Chick-fil-A, is that they, like many restaurants, use "pure, hot extracted peanut oil", which for most people is non-allergenic. However, "cold pressed/gourmet" peanut oils often do cause allergic reactions.
Mom was very nervous about me trying to eat at Chick-fil-A again so the head nurse of the study agreed to go with us to eat lunch there while we were in Little Rock. We all went to Chick-fil-A and I ate the chicken nuggets and waffle fries without having an allergic reaction or any other problems! Being able to eat and play again at Chick-fil-A is awesome because it helps me and my family feel like life is getting to be a little bit more normal again and it gives us another safe option for eating out when we are traveling!
This experience is just one of the many reasons we thank God every day for helping us to get into the peanut allergy treatment research study and for bringing Nurse Karen and Dr. Stacie Jones at Arkansas Children's Hospital into our lives.
Below are some other articles and comments about peanut allergy and peanut oil.
http://www.allergyasthma.on.ca/peanut1.htm "Pure peanut oil is generally non-allergenic, but cold pressed peanut oil or oil contaminated with peanut protein through cooking may be dangerous."
http://www.foodallergy.org/allergens/peanut.html "Studies show that most allergic individuals can safely eat peanut oil (not cold pressed, expelled, or extruded peanut oil - sometimes represented as gourmet oils). If you are allergic to peanuts, ask your doctor whether or not you should avoid peanut oil."
Whether or not to eat foods prepared in pure, hot pressed peanut oil is an individual decision that individuals with peanut allergies should make on an individual, case-by-case basis after consulting with their doctor, reading the nutrition information, questioning the food preparers/restaurant managers, and taking all necessary precautions to reduce the risk of an allergic reaction.
We have added a new food page with examples of the peanut free manufactured foods that I like to eat. The list includes snacks like Skittles and SMARTIES, breakfast foods like Bisquick pancake mix and Eggo Waffles, plus Blue Bell ice cream and more good stuff! (Don't worry, I like to eat fruits and vegetables too, especially broccoli.)
We also list the peanut safe fast food restaurants I can eat at despite having a severe food allergy. I sure wish the list was longer.
So check out our new Peanut Free Foods page and then submit a comment telling me what your favorite peanut allergy safe foods and fast food restaurants are.