My Daily Dosage Update After 8 months, my daily dosage is now the equivalent of about 4 peanuts! When I first started in thepeanut allergy treatment research study, my daily dosage was very small.
SunButter Is a Delicious Alternative to Peanut Butter My dad really misses his peanut butter & jelly sandwiches so he recently ordered some SunButter® as a peanut butter alternative.
SunButter is made from sunflower seed in a peanut-free facility. I was never a fan of the texture or taste of peanut butter so I have not tried it yet, but Dad loves it. It definitely looks and smells just like peanut butter and Dad swears it tastes like peanut butter too! He got the creamy kind but it also comes in chunky and other types.
They also have a peanut-free snack trailmix with fruit that he likes too. Order at www.sunbutter.com.
My Daily Dosage Update After 7 months, my daily dosage is now roughly the equivalent of 3 peanuts! When I first started in thepeanut allergy treatment research study, my daily dosage was only just a few grains.
Food Allergy Database Concept We are considering building a web based database resource for people with food allergies and for food allergy researchers.After reading the description below, we would appreciate your feedback about this database idea by submitting a comment to this post or an e-mail.
Think of this concept as a web based, searchable database that combines the usual benefits of searchable data (though it would consist only of self reported information) with the combined benefits that chat sites, customer review/ratings sites and mapquest/google maps sites provide.
The data would only be as personal as the submitter would want it to be. The submitter could answer as many or few questions as they liked and have control over their privacy options.
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!
After 6 1/2 months, my daily dosage is now about equal to 2.5 peanuts! When I first started in the peanut allergy treatment research study, my daily dosage was so small you could barely see it in a cup.
Reports of Good Study Results In the other peanut allergy treatment study at Arkansas Children's Hospital, everyone is eating real peanut flour, every day, no placebos for anyone. A few of the kids we met that are in that study are doing really good. After a year, they are passing food challenges of as high as 8-10 peanuts. We were told some very exciting results from this peanut allergy treatment research study should be published in a major medical journal by this Summer. We are also hearing that their increased tolerance to peanuts, appears to be long-term!
Blog Posts Coming Soon
Answers to questions about our travel routine (every other week, we spend 14 hours in the Expedition for about 2 total hours of hospital lab time!)
Live updates of our peanut safe fun from vacation at Disney World in Orlando
P.S. Thanks for the comments and e-mails from our friends on the PeanutAllergy.com discussion boards!
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.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.
Recently I was asked what the allergy skin tests for my peanut allergy study feel like. It feels like a cross between a sting and a pinch as they have to scratch your skin in different places to put the different drops on you. For me, they do this on my back. It took me a few times to get used to the stinging/pinching feeling but it only lasts a few seconds and now the worst part is the itching for 15 minutes without scratching! The different drops all have different solutions to determine how allergic you are to different levels of peanut (low, medium or high). When the nurses are doing my skin tests they actually draw a circle around the red, itchy area with an ink pen to show how big or strong my allergic reaction is to each of the different test spots on my back. Then they put scotch tape over each of the circles and gently pull up (like removing a band-aid). The ink circles show up on the clear tape and they put the pieces of tape on my charts for comparison to earlier tests. Hopefully, my circles are getting smaller.
The best part of these allergy skin tests is after the 15 minutes is up, they wash your back with a cold wash cloth and put anti-histamine cream on you! Ahhh, that feels good! Then you get a reward of playing Nintendo Game Boy or other games and sometimes you even get to pick from the prize room.
So as you can see, life in a peanut allergy treament research study, is tough... not!
In closing, I'd like to give a shout out to my LSU Tigers for winning the 2007 football National Championship! Now maybe, the doctors and nurses in Little Rock can cut me some slack since we lost to their beloved Razorbacks this year. GEAUX TIGERS!
It's Christmas day 2007 and this is my very first blog post ever and the official launch of the ASK ABOUT MY PEANUT ALLERGY site! Actually I talk and Mom and Dad type on the computer paraphrasing for me. Please bare with us as we are all new to this blog and web master thing. (NOTE: We haven't finished building our response forms yet, so feel free to send Dad any comments with tips on how to make my site better! )
It's hard to believe it's been over a year ago since deciding what to eat became such a serious part of my life. It was Thanksgiving week 2006 when I had my severe reaction described in the "FAQ" page. A few days later, a Pediatric Allergist was able to confirm my peanut allergy. It's amazing how quickly your life can change so dramatically. We went from eating out several times a week (one of the perks of living in Louisiana) to thinking we were going to be all eating oatmeal the rest of our lives!
There was so much stress in the first months after my diagnosis. Suddenly every food item was a major threat and we all felt sorry for ourselves. It was especially hard for family and friends to understand how what was perfectly acceptable meals and behavior yesterday, were suddenly risky and even life-threatening to me. The phrase "over-the-top" was used a lot to describe our initial reaction to my peanut allergy diagnosis. But as Mom kept saying, "The most important job Dad and I have is to protect you and until we really understand how to live with your peanut allergy, it's not worth taking unnecessary chances!"
It's now a year and half later and how things have changed for the better. Eating Christmas meals at two different family events this year went really smooth. Mom did a great job of coordinating with everyone to ensure all the food would be peanut and tree nut free. There were a few desert items brought by people that were from bakeries, not ideal, but those things were identified and kept away from the main food. They were not served until the very end when I was able to avoid the kitchen area all together.
I am also very excited that after 6 months in a peanut allergy desensitization treatment program at Arkansas Children's Hospital, the daily dosage that I eat is up to the equivalent of one and a half kernels of a peanut! Learn more by reading the "Treatment Research" page.
Well that's it for my introductory blog. I hope you find this site interesting and helpful. I will continue to update my progress with the peanut allergy treatment study and hope you visit often.