We received the awesome email below from a mother of a peanut allergic boy who credits Bo's blog chronicling his peanut allergy cure as a major factor in their inspiration for enrolling their son in a similar treatment program in Raleigh, NC. These kind of stories validate why we shared Bo's peanut desensitization treatments and still maintain this blog even though Bo is now cured of his peanut allergy!
"Bo is an inspiration!
Hello! I just wanted to let you know that Bo’s story gave us the courage we needed to start OIT with our son. That was over a year ago. Tuesday is our last dose increase before maintenance and next December will be our peanut challenge. So I just want to say thank you from the bottom of my heart! I am so encouraged to see long-term maintenance is easy and not at all burdensome for your son. Please continue to update every once in a while. You can read about my son’s Peanut OIT journey at www.parrotseeds.blogspot.com.
We also found a March 2013 post on Will's blog entitled "What Convinced Me?" that includes a reference and link to Bo's blog, as well as, other resources that any family considering the merits of food allergy desensitization treatment would find valuable.
Congratulations Will on your success so far with your peanut allergy desensitization. Thank you for sharing your own inspirational story of your courageous journey to cure your peanut allergy!
God bless and please join our prayers for the continued success and increased availability of treatment programs for life threatening food allergies.
As we approach this 2013 Thanksgiving our family wanted to give thanks and update you that Bo is now 12 years old and his peanut allergy is cured. We also relocated to the Dallas, TX area in Aug. of 2012.
Bo was 5 years old when he first started a multi-year peanut allergy desensitization program at Arkansas Children's Hospital, that at the time, was one of the first of its kind. You can read more details about the actual peanut allergy treatment by reading our previous posts that chronicled Bo's journey over the years, including that emotional day we learned that Bo's first year he had been actually receiving placebo and we realized we had to repeat the treatment protocal for year one.
For the past year and a half, Bo has simply eaten a Snicker's ice cream bar 3 days a week to maintain his peanut desensitization. Other than that, he is happily leading the life of a typical 12 year old young man. We no longer have to read food labels to ensure peanuts are not listed in the ingredients and we eat out without living in fear of cross-contamination. In fact, we don't carry Epi-Pens anymore since he purposely eats peanuts every week to maintain his body's tolerance for peanuts.
We are so blessed that so many of you from around the world have emailed us recently and over the years saying how Bo's peanut allergy desensitization success story and his courage has inspired others with life threatening food allergies. Several of them have gone on to participate in the many food allergy treatment programs now available and are reporting good results too! Quite simply that was the sole purpose of Bo's blog, to share our family's journey to find a cure for their little boy's life threatening peanut allergy and along the way replace despair with hope.
God bless you all and we will continue to pray for the cure of all life threatening food allergies. We leave you with some photos showing how Bo continues to live life to the fullest thanks to the prayers and medical support of so many, especially the wonderful staff in the Arkansas Children's Hospital Research Institute.
Great news, after 5 years (and 65,000 miles) of participating in the Arkansas Children's Hospital (ACH) peanut allergy desensitization treatment study, Bo passed his final peanut food challenge! He has now been declared "tolerant" to peanuts! During this blinded food challenge increasing dosages were consumed in the hospital's pediatric clinical research facility on a strictly timed schedule. There were several rounds of these food challenges which included a blinded series where we did not know if Bo was getting the placebo or peanut protein in the form of peanut flour. When all was said and done, in the final 1/2 day Bo had eaten enough peanut flour and actual peanut butter to equate to about 4 tablespoons of peanut butter... with no reaction at all! We were also shown the 5 years of Bo's blood IGe level charts. They clearly showed his starting point of over a 100 which remained constant throughout year one (turns out he had gotten placebo year 1). Then in year 2 his IGe scores sharply increase as his body escalated it's response to the constant peanut protein exposure. Later in the year and subsequent years his IGe scores show a constant decline until today, 5 years later, where they have stabilized at <10 IGe! We feel extremely blessed to have been able to participate in such a successful peanut allergy desensitization study. We now have clinical proof that long term, medically supervised, gradual food allergen exposure desensitization therapy holds great promise for people with life threatening food allergies. The lack of improvement or reaction during Bo's placebo phases and challenges also substantially validates that these life threatening food allergy reactions are physical responses from the body and NOT psychological responses. Bo has now graduated from the peanut allergy study. This means he will only be monitored once a year from now on with blood work and skin tests. We no longer are required to read labels or avoid peanuts in his diet. We have been advised for Bo to continue to eat peanuts or peanut butter several times a week to maintain his desensitization to peanuts. Other kids in the study have been doing this final maintenance phase for over a year with no peanut reactions. Words can not express the gratitude we have for the staff at Arkansas Children's Hospital (ACH) food allergy research group including Dr. Stacie Jones, nurse Anne and nurse Karen! In addition we want to thank all of our family, friends and blog readers for the many kind comments, emails and prayers of support over the past 5 years of Bo's incredible journey to a peanut allergy free life! I want to thank my wife Betsy for her tireless dedication as Bo's mother and as my soulmate. She was relentless in her drive to make this peanut allergy therapy an option for Bo and selflessly did whatever it took to keep Bo safe including making the 750 mile round trip from S. Louisiana to Little Rock every other week for two years and then again and again and again. I want to honor Bo for his tremendous courage, selflessness and great positive spirit. He was only 5 years old when his peanut allergy treatments began and he is now an amazing little 10 year old man who I am proud of beyond words. Love you little man! Finally, we want to thank God above for making all things possible. P.S. To receive information about clinical trials enrolling at Arkansas Children's Hospital (ACH) text "RESEARCH" in the body of a text message to 772937 as you would a phone number. Sincerely, Bo's Parents askaboutmypeanutallergy.com
Well, it's been almost a year since we last posted an update about Bo's peanut allergy desensitization treatment study at Arkansas Children's Hospital in Little Rock. We'll explain the delay later in this post.
For over 3 years now, Bo has been successfully eating 34 peanutbutter M&Ms every day to maintain his desensitization to peanuts. During this phase of treatment our visits to Arkansas Children's Hospital have been less frequent so there has not been much news to post on any changes to his situation. Our lives have pretty much become "normalized" over the last few years because of this wonderful peanut allergy study... other than his need to eat a bag of peanut butter M&Ms every day! Bo is 10 years old now and plays football, basketball and baseball among many other things. In fact, he routinely sits in the dugout with peanut shells all over the floor with no reaction at all!
This week marks a major milestone in Bo's treatment as he will face a food challenge and quarterly blood work and skin tests at Arkansas Children's Hospital in Little Rock to measure his current allergic reaction level to peanuts. If the food challenge and other tests at the hospital go well, Bo will enter the next long term phase of his peanut allergy desensitization treatment by stopping his daily doses of peanutbutter all together. This will be a bit of a mental challenge us all as we are a bit anxious about not having the daily routine we have become so used to that has so far almost completely eliminated Bo's life threatening peanut allergy.
After a period of weeks without his daily doses, we will then return to Arkansas Children's Hospital for another food challenge and other tests to determine if his body is able to maintain his desensitization to peanuts without eating daily doses of peanut protien.
We promise to keep you as updated as possible. Please bear in mind that we are facing a bit of a new personal challenge as Dad's job of 7 years is being relocated far away so we have some tough decisons ahead for the family which will be taking up a lot of our time.
We also want to explain that one of the primary reasons for the lack of posts over the past 9 months was the lengthy battle for Bo's grandmother "Nana" with leukemia. Our focus was on making trips to be with her at M.D. Anderson in Houston, praying for her and all the things that go along with a loved one battling a debilitating disease. Our beloved "Nana" passed just before Christmas after a long and brave fight.
We want to remind you that just about anyone age 18-60 can become part of the bone marrow donor database with a just a simple cheek swab to collect some DNA. Learn more about becoming a bone marrow donor at www.marrow.org.
Just a quick update that Bo is doing well with his peanut allergy treatment. He continues to eat 34 peanut butter M&Ms everyday to maintain his peanut desensitization. Bo is not “cured” of his peanut allergy but he has become significantly enough desensitized to peanuts that our world is nearly normal again.
FYI, Bo’s grandmother is undergoing treatment for acute myeloid leukemia. Did you know that the bone marrow donor database is quite small, leaving many people without a match? It also may surprise you that immediate family is frequently not a good DNA match. So we wanted to take this opportunity to help raise awareness that just about anyone age 18-60 can become part of the bone marrow donor database with a just a simple cheek swab to collect some DNA. Learn more about becoming a bone marrow donor at www.marrow.org.
For our new readers, a quick recap of the past 5 years of Bo’s peanut allergy journey is provided below:
Nov. 2006: Bo is diagnosed with a life threatening peanut allergy after losing consciousness during an anaphylactic reaction to a bite of a candy. Suddenly, we realize it is life threatening for Bo to eat out, enjoy treats at schools, travel or even have birthday cake at parties.
June 2007: Bo starts a peanut allergy study at Arkansas Children’s Hospital over 400 miles away in Little Rock requiring 14 hour car trips … every other week… for over two years… to monitor his reaction to increasing peanut doses, do skin tests and blood work!
June 2008: Bo fails his peanut challenge and we learn during the unblinding of the year 1 clinical results that he had been randomly assigned to a placebo control group the first year and not actually receiving peanut powder. We are now faced with having to repeat a year of the peanut allergy treatment study starting at the minimal introductory dosage. We are emotionally drained and financially frustrated but ultimately realize we are blessed to be in a treatment program whose future results will now be validated by a lack of response to the placebo treatment.
May 2009: In order to get enough peanut protein daily to maintain his increasing levels of desensitization, Bo graduates to eating more than 30 peanut butter M&Ms every day instead of peanut powder. This phase of the study only requires quarterly visits instead of twice monthly.
Aug. 2009: Bo’s peanut allergy treatment is going so well he no longer has to eat at the peanut safe table at school.
Thank you all so much for your many prayers and kind e-mails. We pray that all people dealing with food allergies soon have the option to participate in food allergy desensitization treatments if they want to and one day for the preventive cure to end the fear, anxiety and suffering caused by life-threatening food allergies!
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.
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.
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.
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.
Less stress now over the food being served at birthday parties and holiday meals
Now able to eat in more restaurants (convenient and fun)
Now able to eat some of the foods labeled "may contain" or "assembled in a facility that processes nuts"
Now allow Bo to spend the night out with friends and relatives
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.
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!
The purpose of the food challenge after one year of daily peanut ingestion desensitization treatment is two fold.
The double blind food challenge takes a total of about 4 hours to complete and involves eating incremental amounts of mix A and mix B, one of which is secretly a placebo. The food challenge is stopped immediately upon any signs of an allergic reaction. The subject is observed in the hospital environment as they first eat the increasing doses of mix A over a short period, looking for any signs of an allergic reaction. After finishing the maximum dose of mix A, then the food challenge is repeated with mix B. Afterwards, it is revealed which food mix was placebo and which was peanut. This methodology ensures the subject does not have subjective "false" reactions based on emotions, such as, reporting tingling lips if they know they are eating peanut.
The max dose given in the food challenge is 25% more than the subject's current daily peanut dosage. If no allergic reaction is observed after the final max dosage of the peanut mix, the subject knows they have a 25% higher tolerance "safety net" than their daily doseage levels.
Bo passed the peanut food challenge with flying colors, no allergic reaction what so ever and his skin test that morning showed visible signs of his increasing desensitization to the various dilutions of peanut compared to his results when he began the study!
Note: While life for Bo and his parents is definitely getting closer to normal due to his peanut allergy treatment success (like having more flexibility with restaurant options and birthday cakes/ice cream), as long as peanuts are not an actual ingredient, we still avoid foods labeled as "may contain peanuts or tree nuts" or have peanuts listed as an ingredient as a common sense precaution.
Bo will continue eating his daily peanut dose and will participate in quarterly blood tests and skin tests so that his long term peanut allergy desensitization results can be tracked.
Thank you all so much for your many prayers and kind e-mails. We pray that all people dealing with food allergies soon have the option to participate in food allergy desensitization treatments if they want to and one day for the preventive cure to end the fear, anxiety and suffering caused by life-threatening food allergies!
Sorry about the lack of posts recently. Bo battled the flu and Dad had an emergency appendectomy so the trip to Little Rock for Bo's peanut allergy food challenge has been postponed. Everybody is doing well now, though Mom needs a much deserved rest from playing nurse to the men of the house while running her travel agency business at the same time!
We are very excited to have received several e-mails recently from our readers that are participating in peanut desensitization treatment studies similar to Bo's at Duke in North Carolina, Australia and Spain! The fact that food allergy desensitization therapies are going global should help give this type of food allergy research and treatment even more medical credibility.
These food allergy treatment studies are laying the groundwork for the day in the not-so-distant future when food allergy sufferers can easily get safe, effective treatments or maybe even prevent anyone from ever developing a food allergy in the first place!
We are now in the home stretch of Bo's peanut allergy desensitization treatment through Arkansas Childrens Hospital. During this phase, we only have to make the 7 hour trip to Little Rock once a quarter instead of the every other week pace we had to do for the past two years. That means he had a lot more free time this summer for swimming, baseball camps, spending the night with friends and visits with the grand parents.
Bo has been eating 34 peanut butter M&Ms every day since May as his daily dose to maintain his peanut allergy desensitization. We have received a few e-mails asking how our life has changed as Bo's desensitization to peanuts has increased throughout his peanut allergy treatment. Below is a quick list of some ways our life is slowly returning to normal as Bo's peanut allergy desensitization treatment continues and we no longer have to worry so much about an allergic reaction due to cross contamination or "may contain" levels of peanut exposure.
We are now more comfortable with Bo eating foods that don't list peanuts in the ingredients, including restaurants where chefs assure us they can accommodate his peanut allergy
Bo will be in second grade this year at school and we are going to allow him to eat at the regular table in the school cafeteria instead of the peanut safe table whenever he wants to
We are also going to allow him to start riding the bus
We have allowed Bo to stay overnight with friends and family as long he has his Epipens with him
Finally, we are hoping that we can get Bo's final food challenge scheduled with Arkansas Children's Hospital. For some reason, the protocal for those study participants who received placebo in year one (In June of 2008 we learned Bo had received placebo in year one) differs from the defined protocal for those that did not get placebo by omitting the food challenge at the end of one year of treatment. We have been patiently working with the nurses and Doctors to get the hospital board to approve Bo's food challenge so we can understand the extent of protection Bo now has due to his peanut allergy desensitization. It's a little frustrating to have invested so much time and money to this peanut allergy desensitization treatment at Arkansas Childrens Hospital to now have a documentation technicality slow down this important food challenge to validate Bo's success for us and others who will benefit from this great research.
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.
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:
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!
Yesterday, Bo achieved an amazing milestone in his peanut allergy desensitization treatment at Arkansas Children's Hospital by eating more than 30 peanut butter M&Ms without an allergic reaction!
Let's pause and reflect back to let that sink in because it's been a long journey to get Bo to this point with his life threatening peanut allergy. Prior to eating the peanut butter M&Ms yesterday under the watchful eye of his peanut allergy study nurses and doctor, it had been more than 2 years since Bo had tasted peanut butter. That was his first time tasting peanut butter when he bit into a chocolate candy at age 4 not knowing it had peanut butter in it. Even though he immediately spit the candy out, not liking the taste, he started to go into anaphylactic shock within minutes rapidly progressing from instant mouth itching and hives to difficulty breathing and a severe drop in blood pressure.
Bo had always told us he hated peanuts and was allergic to them though to our knowledge he had never eaten them since he always said he did not like them. We never really understood how he knew he didn't like peanuts and figured he would just try them one day when he felt like it.
Days after this episode we had confirmation that Bo was indeed severly allergic to peanuts. In fact, multiple rounds of food allergy testing demonstrated he would have strong reactions to just 1/5th of a peanut.
So now after eating increasing amounts of peanut flour every day for a year in the peanut allergy desensitization study in Little Rock, the amount of peanut flour had become so large that it is not very palatable or easy to eat. So the treatment protocol allows for the daily dosage to be switched from peanut flour to certain foods containing real peanuts that have a known, consistently measurable amount of peanut protein. (NOTE: thanks to Mars company/M&M Candies for providing the peanut protein content information of their candies to the peanut allergy study staff and shame on Reese's candies for refusing to provide this information to support the research.)
So yesterday, after a skin prick test, blood work and then a few anxious moments about the reality of what we were asking him to do... Bo slowly began eating the peanut butter M&Ms... a lot of them!
Now, every day Bo will eat a measured amount of peanut butter M&Ms for his daily peanut desensitization dosage. His blood will be tested every few months to monitor the level of peanut specific IgE antibodies it is producing to the peanut protein. If his peanut specific antibody count drops to a low enough number, the study will have Bo stop eating the daily dosages for a period of time and then remeasure his peanut protein antibody count to see if the effects on his immunology system are long term. Now you're caught up.
FYI, we have been told that the peanut allergy and egg allergy desensitization studies at Arkansas Children's Hospital in Little Rock are currently full and are NOT taking new applicants.
A new USA TODAY article entitled "New strategies help build immunity against food allergies" includes quotes from Bo's mom Betsy and provides an update on his peanut allergy desensitization treatment noting that "He's now consuming a daily dose of peanut flour equivalent to 15 peanuts. On May 4, he'll be 'converted' from peanut flour to real food containing peanuts."
The article covers the success of several emerging food allergy treatments including: oral immunotherapy, sublingual therapy, and food allergy herbal therapy-2 (known as FAHF-2). We want to personally thank USA TODAY Medical Reporter Rita Rubin for her tireless research that resulted in one of the most thorough and accurate articles about these emerging food allergy treatments that we have seen and yet it's still easy to read.
We received a request on behalf of Johnson and Johnson to make people aware that they have a Health Channel on YouTube and one of their videos is about parents of children with food allergies, and an allergy specialist discussing coping strategies. The video can be viewed using this link: http://www.youtube.com/watch?v=apje3PcawNA&feature=channel_page
As always, we want to thank our readers for all their prayers, great comments and e-mails.
Bo has now been participating in a peanut allergy desensitization treatment study at Arkansas Children's Hospital for the past two years. The amount of peanut flour that Bo is now eating every day, without an allergic reaction, is equivalent to the protein found in 10 1/2 peanuts.
Peanut Desensitization Treatment Phase II
We are so excited because our treatment travel schedule is about to improve dramatically. After next weeks visit, we don't go back to Little Rock for 30 days. These 30 days represent the highest daily dosage of peanut flour used in the peanut allergy desensitization treatment study. At the end of the 30 days, we return to Little Rock so Bo can undergo a food challenge requiring him to eat increasing amounts of real peanuts throughout the day while on an IV under Doctor supervision. If he passes that all day challenge, he enters the phase of the treatment study that relies on the kids eating actual peanuts or peanut butter every day, instead of peanut flour, to maintain their peanut allergy desensitization. During this treatment phase of eating actual peanuts every day, we only have to return to Arkansas Children's Hospital once every 4 months, instead of every other week. That will be like getting a raise to the family budget and a lot of personal time back by eliminating 4 travel days every month!
Returning to a Sense of Normalcy
In the past month we have felt confident enough in Bo's peanut allergy treatment that we have begun to reintroduce some activities that had become too risky after we realized Bo had a severe peanut allergy a few years ago. Examples of normalcy that Bo's successful peanut desensitization treatment has afforded us include the following recent activities:
After 50+ stays, Bo has now eaten breakfast twice at the Little Rock hotel restaurant
Bo has eaten Krispy Kreme doughnuts recently from several different locations
Bo was allowed to participate in an overnight camping trip with his scout pack and dad aboard the U.S.S. Alabama battleship in Mobile (Exploring this historic war ship was very cool and we all gained an even deeper appreciation of the sacrifices made by all of the outstanding U.S. service men and women of our military, to ensure our freedom. May God bless them, their families and the U.S.A.!)
After two years of peanut allergy desensitization treatment at Arkansas Children's Hospital under the care of Dr. Stacie Jones (and of course Nurse Karen and Nurse Anne), Bo is now eating the equivalent of 9 peanuts every day without an allergic reaction!
After being in the peanut allergy treatment study for over two years (Bo was getting the placebo in year one) we now only have 2 more every-other-week trips to make to Little Rock! After that, we graduate to only having to go once every quarter. While preparing our 2008 taxes we realized we drove 26,000 miles last year from our home in South, Louisiana to Arkansas Children's Hospital in Little Rock for Bo's twice a month peanut flour dosage increases. The reduced travel schedule will be like getting a raise for the family budget!
As we have been hinting over the past year, the peanut allergy research Bo is participating in has been showing very promising results towards a cure. Now you can read about the success of these peanut allergy desensitization pilot studies for yourself in the news articles below from NPR and USA Today, written after a report was released by Dr. Wesley Burkes of Duke University Medical Center and Dr. Stacie Jones of Arkansas Children's Hospital at a meeting on March 15, of the American Academy of Allergy, Asthma and Immunology in Washington, D.C.
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":
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.
We are now in that phase of Bo's peanut allergy desensitization treatments where the dosage increases alot every two weeks. He is now eating enough peanut flour every day to equal more than 3 peanuts! So far, he has not had any allergic reactions and the only issue we have to deal with is his dislike of the taste of peanuts. But Bo understands how important it is to keep up the treatments and he is preparing himself mentally for April when he will convert to eating peanut products, like peanut butter or peanut M&Ms, every day instead of peanut flour.
Great Online Source for Allergen-Free Foods
AllerNeeds online store provides a large selection of great-tasting 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. And if you have other food allergies, such as, wheat, dairy, egg, or soy, it's easy to shop AllerNeeds web site using their Shop-by-Allergy Search tool.
We have updated Bo's Peanut Safe Foods list page with his favorite foods from AllerNeeds including the chocolate Mars bars, Nonuttin' Granola Clusters with vanilla & caramel, and AllerEnergy Bars - Blueberry.
Birthday Party Tips for Food Allergy Guests
A neighbor made Bo's day this weekend when she went out of her way to make sure all the food (pizza, cake & ice cream) at her son's birthday party was peanut safe for Bo! Kathleen called several times in the days before the party to make sure she had all the bases covered regarding the peanut safety of the ingredients she was cooking with and the food she was buying. Bo was so excited to be able to eat the same things all the other kids were eating at the birthday party. Totally awesome to have such caring friends!
We also wanted to spread the word about a simple, but cool kitchen product we recently discovered that makes it easy for your food allergic child to carry their own homemade, food allergy safe cupcake to a birthday party or school.
It's a plastic container for a single cupcake that doesn't smear the icing or smash the cup cake! Now it's easy for Bo to bring a homemade, peanut safe cupcake in his lunchkit or cooler.
Thanks to one of our alert readers, Colleen, for a tip that Wed. January 14 is the deadline to submit your comments to The Food and Drug Administration (FDA) regarding "May Contain" labeling using the link below. The FDA has begun to develop a long-term strategy to help food product manufacturers use these statements in a clear and consistent manner, so that consumers with food allergies and their caregivers can be adequately informed as to the potential presence of major food allergens, such as, peanut, tree nut, milk, egg, fish, shellfish, soy, and wheat.
The FDA is also interested in receiving comments about whether consumers find advisory labeling helpful for making food purchasing decisions.
We are also proud that Bo continues to earn straight A's on his report cards despite missing two Monday's of school per month for the past two years! (Our secret is making sure he does his homework between watching Star Wars, Indiana Jones and LSU football season review DVDs during the 14 hour round trips in the car to Little Rock and back to south Louisiana.)
Bo's peanut allergy desensitization treatment at Children's Hospital in Little Rock, Arkansas is going great. His daily dosage of peanut flour is now equivalent to more than 2 peanuts! Our confidence that Bo is becoming less allergic to peanuts as a direct result of this peanut allergy treatment research is growing with each twice-a-month incremental increase in his daily dosage of peanut flour.
On our last two trips to Little Rock, Bo got Krispy Kreme doughnuts for being so good after riding 7 hours in the car. As you can see from this picture, Bo is very excited!
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).
Cosmic Ray's Starlight Cafe (fast food, plus some good entrees too)
Tony's Town Square (Feb. '08)
Liberty Tree Tavern (Feb. '08)
Tutto Italia Ristorante (superb!)
Toy Story Pizza Planet (park quality pizza)
Backlot Express(Feb. '08)
ABC Commissary (Feb. '08)
Rainforest Cafe (all menu items peanut allergy safe except some desserts)
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!
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.
Bo's daily peanut flour dosage for his peanut allergy treatment study is now equivalent to more than 1/2 a peanut. So far, Bo has not had any strong reaction to his daily dosages since he was switched to real peanut flour after his 1 year food challenge in June when we learned he had been on placebo the first year.
As you can see by a recent photo below taken at the play ground of Children's Hospital in Little Rock, we try to make Bo's (AKA "Indiana Jones") peanut allergy study treatments an adventure!
Even more exciting, is the fact that other kids in the same study with Bo, who are significantly ahead of him in daily dosage amounts because he was getting placebo the first year, are experiencing great results. These kids that were having severe allergic reactions to trace amounts of peanut when they started the peanut allergy treatment research study over a year ago, are now eating a few real peanuts, instead of peanut flour, every single day without any reaction! Early blood work results are indicating that the desensitization of their immune system to peanuts is potentially having a long term effect.
Thanks for the kind e-mails and comments posted to Bo's blog, please keep them coming!
Bo's new daily dose of peanut treatment is now about equal to 1/2 of a peanut. He eats this every day mixed with applesauce. So far he has not had any type of allergic reaction to these initial doses of peanut.
Sorry about the lack of recent posts. Even though our house was spared any damage from hurricanes Gustav and Ike, they definitely disrupted our normal routine for the past month. Dad has been working long hours keeping his company's web site updated about hurricane related issues and mom has been handling all the logistics of rearranging many people's travel arrangements and the fun of constantly changing school and baseball team schedules.
Thanks for all the great comments and e-mails, we really enjoy hearing how Bo's blog about his participation in this peanut allergy treatment research study is giving so many of you hope. Despite the expense and time required of the 900 mile round trips every other week for the study, we feel truly blessed to be able for Bo to participate in this peanut allergy treatment research.
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?
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.
The evacuation hotel must have a kitchen, since we have few safe restaurant options for Bo, especially in an unfamiliar city
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!
Bo's new daily dose of peanut treatment is now about equal to 1/3 of a peanut. He eats this every day mixed with applesauce. So far he has not had any type of allergic reaction to these initial doses of peanut.
Today Bo happened to be in the lab at the same time as our friend that we mentioned in our last post, whose son had an anaphylactic reaction to his initial very low peanut allergy treatment dosage. Her son and Bo have become buddys and we are happy to report that he has now been able to increase his daily dosage level without an allergic reaction! We look forward to watching his progress in the peanut allergy desensitization program.
Our Local Subway is Now Peanut Free We checked in with the owner of our local Subway and found out that he had stopped carrying the peanut butter cookies due to so many customers mentioning food allergies. So we are thankful that Bo now has an additional restaurant choice here in our home area. Be aware though, that each individual Subway location decides what cookies and other foods to carry, so we only let Bo eat at this particular Subway location.
Helpful Food Allergy Awareness Flashcards We recently had a chance to review a food allergy education product. The Beyond A Peanut - Food Allergy Awareness Cards teach peanut and tree nut allergic children and those who provide care for them, that staying safe with a food allergy goes beyond the allergen itself. The 36 color coded flashcards on a metal ring provide comprehensive safety information developed in an easy to learn format. The cards were developed by the mother of two children with life-threatening peanut allergies with support from the Food Allergy Initiative (FAI) in New York. The flashcards introduce critical concepts to those living with food allergies, including: cross-contamination, the importance of label reading and always carrying emergency medication. They even highlight specific concerns to be aware of with certain types of food, such as, ice cream and baked goods.
While these flashcards are specific to nut allergies, it is reported they have proven to help raise awareness and understanding of food allergies overall. We believe the Beyond A Peanut - Food Allergy Awareness Cards are a valuable, easy-to-use resource for family members, babysitters, teachers, classmates and friends of those with nut allergies that will be used over and over again as a reference. Job well done Beyond a Peanut!
Bo's new daily dose of peanut flour treatment is now equal to about 1/6 of a peanut. We are thankful that so far he has not had any type of allergic reaction to these initial low doses of peanut.
When Is "Over-the-Top" Justified? As a parent of a peanut allergic child, if you've ever been told you were being "overprotective" or "over-the-top" with your actions to protectic your food allergic loved one, read on for some validation. A friend of a friend's son was recently accepted into the same peanut allergy desensitization treatment study at Arkansas Children's Hospital in Little Rock that Bo has been participating in for the past year. In fact, they moved from the west coast to TN, to live closer to the study since it requires two hospital visits per month for the first year.
Anyway, on day one of the study he was being given peanut flour in very low, incremental doses to determine his allergic reaction threshold. Quickly, he developed stomach cramps, hives, itchy throat and slight wheezing at the dosage equivalent of less than 1/50th of a peanut (visualize a few grains of sand in a cup)! Benadryl and Epinephrine were administered by the medical staff to stop his allergic reaction from progressing. He has now successfully started his daily peanut dosages at a very low dosage.
Clearly, given the low amounts involved that induced an allergic reaction, we are talking about this young boy having a peanut allergy sensitivity that would be considered a "cross contamination" risk level. In other words, this is a child whose mother, has rightfully been obsessed with protecting her peanut allergic child from bakery products and items "manufactured in a facility that processes peanuts", despite the fact friends and sometimes even family members told her that she was being over protective. Obviously, there are food allergic individuals and situations that warrant so-called "over-the-top" protective behavior despite the social stigmatism and anxiety. So hopefully their story helps validate some of the diligence, precautions and even anxiety that food allergic families deal with as part of their "normal" daily lives.
Today was Bo's second visit to Little Rock since we unblinded his peanut allergy treatment study and learned he was on placebo for the first year. We have been returning every 10 days instead of every 14 in order to achieve a higher daily dosage before he starts school in two weeks.
Food Allergy Safe Vacation Since it's summer vacation time we are getting lots of questions about food allergy safe vacationing ideas. If a Disney vacation sounds like fun then your in luck, because Disney has a phenomenal food allergy safe dining program! So you and your food allergic loved ones can relax and eat safe safe while in the park! Here's a link to our past blog about our wonderful Disney peanut allergy safe vacation to FL. Many other food allergic families have posted blogs and sent e-mails with similar great reviews about Disney really supporting food allergic park visitors.
Thank You Readers Finally, we want to acknowledge all of our readers (U.S., Australia, Canada, China, India, New Zealand, U.K., and others) who have so graciously extended their thanks and encouragement for us to stay the course with Bo's peanut allergy treatment study, especially after we learned he had been on placebo for the first year. We recognize that many of you get a strong sense of hope through Bo's peanut allergy treatment updates and we are happy to share our story, both in good times and tougher times.
P.S. As a precaution and to protect the integrity of the peanut allergy treatment study results, the study directors and researchers requested that we not post Bo's actual dosage amounts in mg but rather by using general peanut equivalent amounts. We have worked with them to understand the approx. conversions and have honored their request, including changing references to dosage mg in all previous posts.
A fresh start for Bo Bo has now restarted his daily peanut allergy treatment program at Arkansas Children's Hospital in Little Rock. His starting daily dosage of real peanut flour is so small it looks like 10 grains of sand in the cup.
As most of our peanut allergy study blog readers know by now, Bo is repeating year one of the peanut allergy research study. This is because on his one year anniversary of the peanut allergy treatment, he failed his oral food challenge. Then, after the one year oral food challenge, as planned, it was revealed that Bo had in fact been randomly selected to get placebo (simple flour) all year long. We knew from the beginning of this double blind study that there was a 1 in 5 chance of him being randomly selected for placebo, but hoped it wouldn't be him.
So now our journey to a cure for peanut allergy takes on a new life, as Bo is definitely receiving real peanut flour for his daily dosages now. By the summer of 2009, we should eventually get back up to the equivalent of about 9 1/2 peanut kernels!
Peanut allergy desensitization successes While in Little Rock this week, we got to see a 5 year old boy that is in year two of a peanut allergy desensitization study at Arkansas Children's Hospital. His study is very similar to Bo's, except no one is getting placebo in that study. His daily dosage of peanut flour is now equivalent to more than 8 peanuts and we watched in amazement as his skin peanut allergy test was negative... no reaction! This lack of allergic reaction for this boy after two years of peanut desensitization treatment was remarkable considering how he has had several reactions over the course of the last two years to increases in his daily dosages of peanut flour.
In fact, we learned that some kids, after two years in these peanut allergy treatment research studies, have passed an oral food challenge equivalent to two tablespoons of peanut butter, even after going off the daily peanut flour dosage for a month!
Patience needed for treatment research There really is a lot of promise in this peanut allergy and other food allergy desensitization research. And while everyone involved in these research programs... doctors, nurses, researchers, and the participating food allergic families are anxious to get these promising treatments out to more food allergy sufferers, there is too much risk of rolling these treatments out until the scientific community is fully satisfied that the results are long term, repeatable across larger populations, and it is clearly understood exactly how the therapy works to affect the immune system. Until these questions are answered to the satisfaction of the scientific and medical communities, premature roll out of these therapies would jeopardize all the progress being made with these type of food allergy treatment research programs.
As always we'll keep you updated through this blog on Bo's peanut allergy treatment study progress and we welcome you to post comments or send e-mails to email@example.com(TIP: Do not include spaces in address when sending e-mail)
Today, Bo completed the first year of his two year double-blind peanut allergy desensitization study at Children's Hospital in Little Rock, Bo's food challenge was stopped today after eating less than 100 mg of peanut flour because of his positive allergic reaction which included itchy mouth, lip swelling, and some hives.
Afterwords, we learned that Bo was part of the peanut allergy study group randomly selected to receive placebo instead of the peanut flour. So after one year of 900 mile round trips every other week, we now start over with the very low base daily dosage and repeat year one of the peanut allergy treatment. Although we are disappointed, we take comfort in the fact that from now on Bo is guaranteed to be getting the real peanut flour and we look forward to the treatment decreasing his sensitivity to peanuts as the treatment has done for others.
Please visit Bo's blog often for updates on his progress and keep the great e-mails and comments coming!
Peanut or Placebo? The question of whether Bo has been receiving a daily placebo or actual peanut flour for the past year as a participant in the peanut allergy treatment research study will finally be answered June 16. For Bo's parents, that's 20 long days and the anxiety of the possibility that he was randomly selected to be among the 1/3 of kids in the study getting a placebo, instead of the real peanut flour, are weighing on us.
Flashback to the euphoria of last summer when we first found out that Bo was accepted in the 2 year peanut allergy treatment study at Arkansas Children's Hospital. We knew it would be a big commitment, in both money and time to make the 14 hour round trip to Arkansas every other week, for 2 years. My wife was the one that insisted that it was a great opportunity to get Bo into a treatment program regardless of the emotional and financial costs. I was hesitant at first, thinking we should wait for a treatment program to come to us or at least closer than 450 miles. I had all the right excuses...he's going to miss a lot of school, we will miss a lot of work, plus the expenses of hotel, gas, wear and tear on the car. I still hadn't come to grips with how fast our lives were changing now that we knew that Bo's seemingly random hives and fainting episodes were a result of a severe and potentially life threatening peanut allergy.
Immediately upon meeting the doctors, nurses and other families involved with the peanut allergy treatment study at Arkansas Children's Hospital, we knew it was the right choice and how blessed we were to be selected. We were surrounded by food allergy experts who really cared about the kids and their families. Plus, the other families in the study we met became our support group. We learned about the success of kids receiving the same treatment Bo's study was designed around, only they had been at it a year or more and all were receiving the real peanut flour, no placebos. Their success was our hope!
We knew that Bo's treatment program was a double-blind study in which neither the doctors, nurses, or the families know who has been randomly assigned to get the placebo. Secretly, maybe even selfishly, we prayed it wouldn't be us, surely we were too committed for God to let that happen. All those hours in the car, all those rural small town miles (so small that during a 4 hour stretch of the drive, there are only two towns in which there is even a safe place for Bo to eat... Wendy's. Placebo is for someone else, not us... right?
On June 16 & 17 as Bo gets hooked up to an IV as a precaution for his day long series of food challenges of eating varying doses of real peanuts, it will be revealed whether or not we have been getting placebo or peanut for the first year of the peanut allergy treatment study. Regardless of the outcome, we have truly been blessed to be a part of this study and by the wonderful response to Bo's blog site!
What happens if Bo has been getting placebo since day 1? We start back at square one of 6mg of peanut flour daily and have 2 more years of traveling to Little Rock every other week to complete the study, but at least we will be guaranteed to be getting real peanut from now on to build up Bo's tolerance.
What happens if Bo has been getting peanut flour since day 1? Bo's dosage will be adjusted based on his reaction to the peanut food challenge and we will only have 1 year remaining to complete the study. Also, the protocol changes so that we need to only go to Little Rock once every 4 months, instead of every other week!
Regardless of the outcome on June 16, we promise to keep you posted on Bo's progress on this important next phase of his peanut allergy treatment study. Please join our prayers that the cure and prevention of all food allergies and diseases will be realized soon, so that we may all live safe, healthy, and normal lives.
My Daily Dosage Update After 11 months, my daily peanut allergy treatment dosage is now approx. the equivalent of 9 1/2 peanut kernals! When I first started in the peanut allergy treatment research study, my daily dosage was only like a few grains of sand.
Dear Trace, As the parents of a child with a severe peanut allergy, we wanted to say thank you for helping to raise much needed awareness about the seriousness of food allergies and the urgent need for funding food allergy research through your recent appearance on the "Celebrity Apprentice" and the dedication of proceeds from iTunes sales of your hit country song "Your Gonna Miss This".
We were very moved by your dedication, passion, and the class you showed while representing Food Allergy & Anaphylaxis Network (FAAN) and the families, friends and medical staff dedicated to protecting our food allergic loved ones while balancing the desire for them to live normal lives until we find a cure for all food allergies.
Our son Bo is in a peanut allergy treatment research study at Arkansas Childrens Hospital (ACHRI) in Little Rock, and we constantly see the living proof of the real benefits and promise that food allergy research is already providing to those with food allergies. And now that we have your great albums loaded on the iPod, we have more great music to help us pass the time during the 7 hour drive from south Louisiana to the peanut allergy study in Little Rock every other week!
Thank you Trace Adkins for all that you do to support food allergy awareness and research. God bless you and your family.
My Daily Dosage Update After 10 months, my daily peanut allergy treatment dosage is now approximately the equivalent of six peanuts! When I first started in the peanut allergy treatment research study, my daily dosage was only a few grains.
Food Allergy Skin Test and Blood Work Today's visit to Arkansas Children's hospital involved blood tests and skin tests to monitor my peanut allergy treatment progress. As you can see from the first photo below, I have gotten used to these tests now, so I'm pretty relaxed.
The poking and needles don't bother me near as much as them pulling the tape off afterwards! Dad finds that ironic (one of these days I am going to understand what that word means!)
In this second photo, drops of various peanut dilution solutions are put on my back to test which ones cause an allergic reaction and how big the reaction area gets.
In the third photo, my skin is slightly pricked under each test drop so it gets under my skin. Sounds bad, but each prick feels more like a pinch.
10 minutes after the food allergy skin test begins... can you guess which red spot on my back is my allergic reaction to the full strength peanut solution?
Here's a hint... top right of the picture! I go through all of this in the name of food allergy research, plus Mom and Dad reward me with cool Lego sets too!
My Daily Dosage Update After 9 months, my daily peanut allergy treatment dosage is now about equal to 5 peanuts! When I first started in the peanut allergy treatment research study, my daily dosage was so small it looked like a few grains of sand.
FYI, my picture was used for the front cover of the new Arkansas Children's Hospital "conducting Clinical Research" brochure. Since I was also featured in a photo for ACH's 2007 Annual Report, Dad thinks I should start selling autographs to help pay for our travel expenses to AR. Not!
Recent Food Allergy Research Headlines:
2/21/2008 National Jewish Launches Study to Understand Food Allergy Researchers at National Jewish Medical and Research Center are launching a comprehensive study of food allergy in children. Researchers hope the five-year study will help them predict which children will develop allergies and which children will outgrow them. It should also offer insights into what has caused the alarming rise in food allergies and possible ways to prevent or cure them. ... http://www.nationaljewish.org/news/2008/cofar2-study.aspx
January 2008 Therapeutic Effect of Chinese Herbal Medicine on Food Allergy (FAHF-2) FYI, the nurses at ACH said the herbal treatment being used in this study at Mount Sinai School of Medicine has actually shown promising results so far. This peanut allergy treatment study is currently recruiting participants according to their web site. http://www.clinicaltrials.gov/ct2/show/NCT00602160
By the way, thanks for the concerned e-mails. The reason we haven't updated our Blog much recently is because my Dad has been working long hours on a big project at work for the last few months. Things should be getting back to normal now.
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.
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!