Ask About My Peanut Allergy

Bo is doing great with his daily peanut allergy desensitization treatment that was started in July 2007 at Arkansas Childrens Hospital (though it turned out he was actually receiving placebo treatment the first year).

As you will see in this KTHV 11 Little Rock news segment video entitled "Helping your child cope with food allergies", Bo still eats 34 peanut butter M&Ms every day for his peanut allergy maintenance treatment as is doing very well! (Note: First time visitors to Bo's blog can get a summary of Bo's peanut allergy study by reading our June 27, 2010 update post).

Because of the success of significantly desensitizing Bo to peanuts, our life has returned to a near normal (meaning pre-peanut allergy diagnosis) lifestyle. For example:

• Bo is able to eat out in many more restaurants (though we obviously avoid menu items with peanuts in the ingredients)
• Bo is able to eat cake & ice cream at most parties now... "just like the regular kids" (amazing how much this means to him)
• Bo recently took his first trip out of the country to the fabulous Rosewood Mayakoba resort near Cancun Mexico where he experienced many firsts, including snorkeling, riding horses on the beach, swimming in cenotes and exploring caves. They did a fabulous job of accommodating his food allergy with all the food preparation (restaurants, poolside, even room service). Having a mom that's a travel agent certainly has it's perks!
• We can all relax and  enjoy sporting events where they serve peanuts (even if the people near us are eating peanuts)
• It's easier to feel good about Bo spending the night out or being in the care of a babysitter

The next phase of Bo's food allergy treatment will be to stop eating daily doses of peanut protein (peanut butter M&Ms) for 30 days and then see if his body maintains the same desensitization levels to peanuts. We are getting closer to the start of that phase and appreciate your continued thoughts and prayers for Bo's success so that other food allergy sufferers will benefit soon from this promising food allergy desensitization research and treatment programs.

P.S. Many of our readers have emailed asking why it' has been a year since our last post to Bo's blog. The short answer is we didn't have a lot of new news to share over past few months as Bo is now in the maintenance phase of his peanut allergy treatment study and we want to stay true to the original goal of Bo's blog which remains to share important moments of his journey through the peanut allergy study (vs. a day to day life recap blog) and to share the hope this research promises for all those living and coping with life threatening food allergies.

God bless!

Sincerely,

Bo's parents and Bo

As a reminder, Bo started his peanut allergy desensitization treatment study at Arkansas Children's Hospital in July of 2007. At the time, he was so sensitive to peanuts that he would have an allergic reaction to less than a 50th of a peanut kernal.

Bo is now eight years old and his peanut allergy treatment is now in the long term phase where we only have to visit the Doctors once a quarter instead of every other week. Since May of 2009, Bo has been eating more than 30 peanut butter M&Ms every day as part of his treatment in order to maintain his desensitization to peanuts.

Over two years ago, Bo would typically have positive reactions to five of six of the various concentrations of peanut during his skin scratch tests. During his last skin allergy test this past May, Bo had negative reactions to four out of six of the peanut concentrations!

Life has dramatically improved for Bo as direct result of his peanut allergy desensitization treatment success at Arkansas Children's Hospital over the past few years. Because he is now desensitized to peanuts enough to no longer be at risk for cross-contamination levels of peanut, Bo has been able to resume many of his favorite activities and experience new ones. More restaurants and foods are on our approved list now, we have more vacation options (Puerto Rico and Amelia Island, FL were a blast) Bo can participate in and attend baseball games where peanuts are served, eat most birthday cakes, stay overnight with friends and family and experience summer camp for the first time. In other words, life is getting more and more normal for Bo all the time thanks to his continuing peanut allergy treatment!

The goal of Bo's peanut allergy treatment study has never been to completely remove his peanut allergy, but rather to desensitize his body to peanuts to a safety level that he can live a more normal life by simply needing to avoid food in which peanuts are an actual ingredient. Eventually, once Bo's quarterly blood and skin tests results reach a certain threshold consistently, he will move into the final active phase of the peanut allergy desensitization treatment during which he will completely stop eating his daily peanut dose. The hope is that his day-to-day experience, bloodwork and skin allergy tests will continue to demonstrate that his body maintains its desensitization level to peanuts even if he stops eating his daily dose. We know this may seem ironic for the parents of a child allergic to peanuts to say... but that phase of not eating peanuts everyday and then waiting to see how his body reacts, has us a little anxious. We aren't at that stage yet, but we know it's coming.

Until then, we will continue to post occassional updates on Bo's peanut allergy desensitization success. In closing, we want to thank you for your many wonderful comments, e-mails and prayers. We also wanted to answer two of the most popular questions we get asked.

Q. Can you help me get into a food allergy treatment program?
Unfortunately, no. The Food Allergy & Anaphylaxis Network (FAAN) has the most current information about food allergy treatment and study programs.

Q. Why haven't you updated Bo's peanut free food list?
Out of caution, we want to avoid adding foods to the list that Bo first ate after his peanut allergy treatments began.

P.S. As residents of south Louisiana we also ask you to keep the people and wildlife of the gulf coast devasted by the tragic oil spill in your prayers and thoughts. If you need perspective on how just how big of an area has been devastated by this ongoing oil spill tragedy, visit http://www.ifitwasmyhome.com/. Input your city and the oil spill area map graphic will overlay your address and surrounding areas on Google maps.

God bless!

Sincerely,

Bo's parents and Bo

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. Here 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:

• Chick-Fil-A  (read more about my Chick-fil-A experiences)
• Subway
• Wendy’s
• Red Robin  (Note to Red Robin, please open locations in South Louisiana!)

May 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

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:

• Disney's Animal Kingdom Special Diets:
  [email protected]
  (407) 938-3288
• Disney Hollywood Studios (formerly MGM) Special Diets:
  [email protected]
  (407) 560-3551
• Epcot Special Diets:
  [email protected]
  (407) 560-6395
• Magic Kingdom Special Diets:
  [email protected]
  (407) 824-5967

Happy Thanksgiving!

Bo's parents
www.askaboutmypeanutallergy.com

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'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

Due to hurricane Gustav, our family evacuated over 500 miles from South Louisiana to the Dallas, TX area. Dad has a work location here and it puts us within a few hours of Little Rock for Bo's peanut allergy study treatments.

Along with the normal logistical issues of an evacuation...

• Do we leave now, days before we know exactly where the storm will make landfall and how severe it will be to avoid the traffic or wait another few days? For hurricane Gustav, over 2 million people evacuated Louisiana over a 4 day period! That is a lot of traffic, and most people are going to the same 5-6 obvious cities to evacuate far enough to be safe but close enough to manage the drive. Neighbors who left a day after us were only 150 miles away after driving 6 hours.
• What do we absolutely need to bring?  (2 weeks of clothes, basic food, extra cash, insurance & medical records, etc.)
• What would be nice to bring? (photos, games, silverware, etc.)
• What do leave, hoping it survives the storm?  (patio furniture, home electronics, memory items, etc.)

Adding to the complexity of all those issues above, throw in managing around a child's life threatening peanut allergy! So how exactly does that complicate things?

1. Eating options during the actual 5-14 hour evacuation trip are severly limited. In Bo's case, we can bring items from his peanut safe food list and eat at Wendy's.
2. The evacuation hotel must have a kitchen, since we have few safe restaurant options for Bo, especially in an unfamiliar city
3. As a precaution, the evacuation hotel must be near a major hospital

So, we evacuated a day earlier than most people which allowed us to avoid the major traffic and we got a better choice of hotels. Plus we needed more space for the peanut safe food items we brought with us and that we purchased once here. We all give the Homewood Suites hotel a major thumbs up for meeting all of our "home away from home" needs!

We are all safe and feel very blessed that hurricane Gustav weakened a bit before making landfall because it came ashore within 100 miles of our house. If it had been a strong category 3 hurricane or stronger at landfall, we might have been house shopping in north Texas!

At this point, it appears Bo and Mom will be able to go to Little Rock from Dallas as planned for his peanut daily dosage treatment increase at the end of this week or early next week. Dad will busy with work stuff related to the storm and may return home after us.

In the mean time, we are surrounded by many new restaurant options, such as, Red Robins, which quickly provided us 17 pages of peanut allergen information about their menu after we e-mailed them. The information was very helpful, and even though Dad has eaten there before on business trips and raves about how good their food is, we haven't been brave enough to try anything new yet with Bo under these evacuation circumstances. We at least want to applaud Red Robin for the amount of effort that put into making it easy for families with food allergys to make an informed decision about eating from their menu. And though Bo has not eaten there, major kudos to Red Robin for taking food allergys so seriously! More menu food allergy information is available from the Red Robin FAQ page.

That's it for now. Stay safe everyone and God Bless!

Sincerely,

Bo and family
www.askaboutmypeanutallergy.com

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

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
• Epcot Special Diets:
  [email protected]
  (407) 560-6395
• Magic Kingdom Special Diets:
  [email protected]
  (407) 824-5967