Disney World

Treatment Success Helps Normalize Bo's Life

As most of our reader's know from following Bo's peanut allergy research study updates over the past 3 years, we have always focused on the positives. There are plenty of other peanut allergy blogs that chronicle the very real day-to-day challenges we all share of living with a loved one affected by life threatening food allergies. So after a quick trip down memory lane, we want to focus this update on how the success of Bo's peanut allergy desensitization treatments at Arkansas Children's Hospital in Little Rock are slowly bringing more normalcy to Bo's life.

Quick Recap of Bo's Peanut Allergy Treatment Journey

Bo is 8 now, but was 5 years old back in June 2007 when he started the "double blind" peanut allergy treatment study in which a small percentage of participants get a placebo instead of actual treatment but neither Drs. nor participants know who. At that point, he was so allergic to peanuts that his initial daily dosage amount that he was eating was so miniscule it looked like a few grains of sand in a cup. But over the course of the year as the doseage levels were slowly increased, Bo had worked up to eating the equivalent of about nine peanut kernals per day... or so we thought.

On his one year anniversary of participating in the "double blind" peanut allergy desensitization study he failed his food challenge and we learned Bo had been one of the kids randomly selected to receive a placebo in year one of the study. So in June 2008 after one year of 900 mile roundtrips every other week from South Louisiana to Little Rock, we regrouped and started the the process all over again, taking comfort in knowing that he would be getting real peanut for his daily doses from then on. By May of 2009 Bo had graduated to the maximum daily dose and switched from peanut flour to eating more than 30 peanut butter M&Ms every day! In October 2009 Bo passed his food challenge and has continued eating his peanut butter M&Ms every day since to maintain his peanut allergy desensitization!

Treatment Success Helps Normalize Bo's Life

Keep in mind that even though Bo is now able to eat more than 30 peanut butter M&Ms every day without an allergic reaction and we no longer have to worry about cross-contamination level risks, he is still allergic to peanuts. Therefore, we still avoid food with peanuts in the ingredients and Bo always has his Epipens with him wherever he goes.

Below is a list of the ways our life has changed for the better and things we have learned because of Bo's participation in the peanut allergy treatment study for the past few years.

  1. Less stress now over the food being served at birthday parties and holiday meals
  2. Now able to eat in more restaurants (convenient and fun)
  3. Now able to eat some of the foods labeled "may contain" or "assembled in a facility that processes nuts"
  4. Now allow Bo to spend the night out with friends and relatives
  5. Now able to travel more
  6. Are so appreciative for Disney's wonderful food allergy friendly parks
  7. Enjoy receiving wonderful e-mails and comments to our blog about the hope that Bo's story has brought to so many families around the world dealing with life threatening food allergies.
  8. Understand how even in your lowest moments, there is always someone dealing with more life burdens than you.

We pray that this holiday season and 2010 will be a time of good health, happiness and prosperity for all. And, as we do every night, we pray for world peace, for the military to come home soon safe to their families and give thanks for the many blessings in our life!

May God bless you and your families.

Sincerely,

Bo's parents
www.askaboutmypeanutallergy.com


Peanut Safe Fun in CA: Disneyland, Legoland & San Diego

Bo completed his great California adventure in early June and we wanted to provide an update on how his ongoing peanut allergy desensitization treatment made such a difference on this vacation.

But first a quick update on Bo's daily peanut allergy treatment at Arkansas Children's Hospital. Bo, is still eating 34 peanut butter M&Ms every day as his daily peanut desensitization dosage. He has adjusted well from the peanut flour routine and actually likes the taste of peanut butter M&Ms now, though he would prefer not to have to eat so many at one sitting.

If your new to Bo's peanut allergy treatment blog please be sure to read About Us.

San Diego, LEGOLAND, Disneyland, Oh My!

We started out in San Diego staying at the beautiful Hilton San Diego Resort & Spa on Mission Bay. This hotel is simply awesome and in a great location very close to Sea World, parks, and down town San Diego. For breakfast each day, Bo ate different varieties of huge pancakes (his favorite was banana) with bacon. He was so excited that each day he sent his compliments to the Hilton chef!

While we were in San Diego for a few days we went to a San Diego Padres game at beautiful PETCO Park where he ate a hamburger and fries. Highlights of the game included the fact that though there was a man eating a very large bag of peanuts during the game, maybe 5 feet away from Bo, we didn't feel the need to leave because of his peanut desensitization treatment. Bo_running_bases_padres_PETCO_park_06_09Here is a picture of Bo running the bases on PETCO Park field after the Padres game while wearing his LSU baseball jersey. Pretty cool considering LSU won their sixth NCAA College Baseball national championship on Wednesday, June 24!

San Diego was a blast and we thoroughly enjoyed the Midway Aircraft Carrier Museum and exploring Coronado Island. Bo is really developing an appreciation for our military and the freedom that their service and sacrifices provide us all. God bless our troops!

Next we headed to LEGOLAND in Carlsbad for two days where he really had a lot of fun. Our family even won the fire truck competition putting out the fire in our building first before the other teams! The LEGOLAND site provides food allergy safe dining info to help plan your trip and they are helpful at the park. Bo enjoyed his lunch at Castle Burgers and Pizza Mania at LEGOLAND. FYI, in our opinion, the rides and attractions at LEGOLAND will primarily appeal to kids under the age of 9 and we found the time of each actual ride/attraction to be a little short. So if there is a long wait, you may be dissappointed with how fast the ride ends once you get on. There is enough to do at LEGOLAND, including their new Sea Life aquarium, to keep everyone entertained for a day or maybe a day and a half.

While staying at a great new Marriott Residence Inn in Oceanside, Bo ate the do-it yourself waffles and bacon for breakfast each day.

We wrapped up our vacation with a few days at Disneyland Resort and Disney's California Adventure Park in Annaheim. Our first visit to the California version of Disney was a lot of fun and we enjoyed the new to us rides, as well as, our favorites. We had a great meal, including Bo's spaghetti, from the Trattoria restaurant in California Adventures. However, the Disneyland California web site is really lacking in information on food allergy dining compared to the Disney World Florida site. That being said they were very helpful while planning our trip and in the park.

Some final comments on peanut safe dining while in San Diego, LEGOLAND, Disneyland and California Adventure parks. All of these parks were accommodating to guests with food allergies both during planning and in the parks. We had no problem bringing in a small backpack/cooler with Bo's EpiPens and peanut safe snacks.

FYI, while in California, Bo ate peanut safe at the following fast food places:

Bo_redrobin_09May all of our food allergic loved ones stay safe and please continue your prayers that we can realize the peanut allergy and other food allergy desensitization treatment successes with everyone sooner vs. later!

God bless.

Bo's parents
www.askaboutmypeanutallergy.com


Bo's Peanut Allergy Treatment Over 7 Peanuts!

Bo is now eating enough peanut flour every day to equal more than 7 peanuts!

The peanut allergy desensitization treatment study that Bo is participating in at Arkansas Children's Hospital in Little Rock is based off of the Duke University Medical center peanut allergy treatment research directed by Dr. Wesley Burks that is mentioned on page 4 of the Feb. 26, 2009 Time Magazine article "Why We're Going Nuts Over Nuts". Before joining the staff at Duke, Dr. Wesley Burks conducted his food allergy research at the Arkansas Children's Hospital.

Our experience with Bo's peanut allergy desensitization treatment and that of the many kids we have met that have been in these research studies for over a year, echoes the successes of these peanut allergy desensitization treatments described in this quote from the Time Magazine article entitled  "Why We're Going Nuts Over Nuts":

In a new strategy called oral immunotherapy, doctors try to retrain the immune system by hitting it with the offending protein enough times, in increasing doses, that the body's defenses eventually relent and accept the protein as friend rather than foe. "It's the first generation of treatment that would make people less or even no longer allergic," says Dr. Wesley Burks, chief of pediatric allergy and immunology at Duke University Medical Center. On average, children treated this way for a year are able to tolerate the protein equivalent of 15 peanuts, while the untreated group developed allergic reactions after 1 ½ peanuts. For parents, allowing their kids to participate in the study was a leap of faith.

New Peanut Free and Allergen-Free Foods Store a Hit

Bo and his Dad devoured our initial supply of delicious Nonuttin' Granola Clusters and KitKat bars from the AllerNeeds online store, so we had to order more, lots more! Allerneeds carries a great-tasting selection of peanut free and allergen free foods including chocolate, snacks, cake mixes, brownies, muffins and more. All the products they carry are produced in guaranteed peanut/tree nut free facilities. Shop the AllerNeeds web site.

We Updated Our Disney Peanut Free Dining Page

Bo recently returned from a trip to Disney World in Orlando over the Mardi Gras holiday where he was able to eat peanut safe food at several Disney area restaurants he had not tried on previous Disney trips. Check out our updated list of peanut safe dining options in and around the Disney World parks of Orlando. Note the list of restaurants and park food items on this page are ones Bo has safely eaten at while at Disney, but there are many more peanut safe options then just the ones we list.


Peanut Safe Dining at Disney World

We just wrapped up another wonderful Disney World vacation and want to thank the folks at Disney for going the extra mile with accommodating park guests with food allergies.

The list of peanut free Disney restaurants below will help you plan a peanut safe dining experience when visiting Disney World in Orlando. Our son Bo, who has a severe peanut allergy, has safely dined at these peanut safe restaurants in Disney World (except for those listed in orange with an asterisk where the wait time was too long).

Magic Kingdom:

  1. Cosmic Ray's Starlight Cafe (fast food, plus some good entrees too)
  2. Tony's Town Square (Feb. '08)
  3. Liberty Tree Tavern (Feb. '08)

EPCOT:

  1. Tutto Italia Ristorante  (superb!)

Hollywood Studios:

  1. Toy Story Pizza Planet  (park quality pizza)
  2. Backlot Express(Feb. '08)
  3. ABC Commissary (Feb. '08)

Downtown Disney:

  1. Rainforest Cafe  (all menu items peanut allergy safe except some desserts)
  2. McDonald's (separate dessert area) 
  3. T-Rex Cafe* (menu PDF)

Animal Kingdom:

  1. Pizzafari (Feb. '08)

How to Contact Disney Park Special Diets Group:

Happy Thanksgiving!

Bo's parents
www.askaboutmypeanutallergy.com


Peanut Free Disney Dining

Greetings from Disney World in Orlando, FL! Today was day two at Disney after driving over from Louisiana over the weekend. We love coming to Disney, because at age 7, Bo still enjoys the rides and attractions while Mom and Dad get to relax because Disney offers so many peanut safe dining options. This is our second trip to Disney since Bo's peanut allergy diagnosis and we can't say enough wonderful things about how well Disney takes care of special dietary requests for park guests with peanut and other food allergies.

Yesterday we ate dinner at Cosmic Ray's Starlight Cafe at Disney's Magic Kingdom. We ended up at this cafe because we got hungry before our reservation time at The Plaze Restaurant. The menu at Cosmic Ray's consists of burgers, salads, chicken, sandwiches (including peanut butter). Normally the peanut butter sandwiches would have made us turn and walk out but a wonderful staff member (Lynn?) came to our rescue and reassured us that the peanut butter sandwiches were pre-packaged and individually sealed, not made on-site. Furthermore, she personally took our order and coordinated with the kitchen staff to have Bo's chicken nuggets brought straight from the fryer to the counter, ensuring no risk of cross contamination. Though the cafe features quick service type food, everyone's food was good.

Today at Epcot, we had a fantastic italian lunch at Tutto Italia Ristorante. When we arrived, we informed Claudio the Manager, that we had reservations and of Bo's peanut allergy. He immediately reassured us Bo's food allergy would not be a problem and sat us at a nice outdoor table. Our waiters, Enrico and Matteo, took good care of us, including swapping out the table breads for a more limited selection but that only included peanut safe choices.

Bo_eating_Italian_Disney

Bo's spaghetti, mom's pasta alfredo and dad's lasagna were absolutely delicious. It was so exciting to sit down as a family to a nice restaurant meal that we could all eat with a fork, without being paranoid about peanuts or cross contamination! Along the way, the staff even taught Bo some conversational Italian!

Towards the end of lunch, Claudio reminded us that the only peanut safe dessert on the menu was the fresh fruit. But we had a different dessert surprise in store for Bo. We had noticed in the special diet information packet Brenda Bennett at Disney had mailed to us prior to our arrival, that the Nestle premium ice cream Mickey Bars are made on a seperate line making them completely nut free and safe. Ice cream is such a rare treat for Bo, to seem him eat ice cream at a public park like all the other kids was amazing and a little emotional at the same time.

So far Bo's favorite rides/attractions have been Space Mountain, Test Track, Thunder Mountain, and Soarin!

Thanks Disney, for allowing our peanut allergic boy to have a "normal" magical day!

More Peanut Desensitization Results Plus Another Duke Study
We recently received e-mails updates from another family whose young son is in the same peanut allergy desensitization study at Arkansas Children's Hospital as Bo. His mom said that he had an anaphylatic reaction about 2 years ago to a peanut and a half.

Well, he recently completed year one of the peanut allergy desensitization treatment study and passed his food challenge with just some rash and a hive. After the food challenge, his treatment was unblinded where it was revealed he had been getting real peanut the first year. Now, a few weeks later, this boy is eating 26 peanut M&Ms every day as his daily treatment dosage!

Another great e-mail we received was from the mom of a peanut allergic child who said reading Bo's blog helped give her the courage to enroll her child in a peanut allergy SLIT (sublingual immunotherapy) study taking enrollments at Duke. (We believe the link above to be the correct one for this current study).

We will provide more updates from Disney over the next few days.

Bo's Parents
www.askaboutmypeanutallergy.com


Peanut Free Dining at Disney: Days 2 & 3

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!

Bo
Certified Jedi Knight-in-Training


Peanut Safe Dining At Disney - Day 1

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