It has never been my nature to play defense. I find solutions and get things done. Therefore, this notion that my son will have to constantly work around a peanut allergy and restrict his life due to a food allergy, did not sit well with me. Especially since the anaphylactic reaction in late July of 2013, I have been seeking out ways to make his life better and his allergy less of an influence on our life…which really led to the exact opposite. It’s been on the forefront of our minds in an attempt to keep him safe while looking for answers.
Unfortunately for my son, the stress of feeling of his body going into anaphylaxis and the shot of epinephrine has caused him a great deal of anxiety. When your little boy continues to ask you, “Am I going to die, Mommy?” with his little lip quivering any time he gets an itchy eye or a little hive, well, you develop anxiety, as well.
I’ve had a lot of sleepless nights considering the “what if’s.” Continuing to live this way without looking for a solution was simply not an option.
At first, I discovered scent detection dogs who act as service dogs that can detect the smallest trace of peanut even when hidden inside another food. Our dog trainer for our Australian Shepherd puppy began working with us on training, but it became clear, very quickly that our 1year old dog has the mentality of a 5-yr-old boy and would need more time to mature. Getting a trained scent detection dog from one of the wonderful agencies out there would cost us close to $20,000. While I’m sure we could have gone this route with a lot of fundraising, I decided to keep looking for another answer.
I discovered NAET, SLT, trials and studies. Ultimately, OIT is the one that stood out for me and I began to research oral immunotherapy like crazy. In a nutshell (See what I did there? This post was entirely too serious), OIT will mean my son will INGEST HIS POISON, peanuts, in order to become resistant to them. I will explain the process more in future posts, just be assured this is under doctor supervision in minuscule doses at first, in a controlled environment. There are only a handful of doctors in the private sector, outside of trials, that are offering this therapy and of course, not one of them is in Arizona.
After chatting with a mom at my son’s school whose children have severe food allergies, she reaffirmed my belief that OIT was for us. I joined Facebook groups for parents also navigating the world of food allergies and groups for those who had chosen to begin OIT. These groups gave me a glimpse into the everyday life of a family involved in these treatments. I got to read about stomach aches and red, itchy ears but I also got to see pictures of kids eating their first peanut M&M! I saw happy dances after completing the 24 peanut challenge. Most of all, I finally saw hope for my son.
I looked into the closest doctors which were in Long Beach, CA; Dallas, TX and Layton, UT. While reading in one of the OIT Facebook groups, I saw a post from an actual doctor who is offering OIT.
“Offering OIT is not about OIT and it certainly is not about me. Rather, it is about a patient. For those of us who offer it, I think most of us are sincerely striving to offer an opportunity for patients to be in a safer situation with less anxiety, fear, and more freedom. My patients can speak to this, I am very candid about what OIT is and what it is not. I am also very up front in saying there will likely be better, safer, less cumbersome therapies available in the future. OIT docs will be amongst the first to utilize and implement these therapies when they are available because we are the absolute most dedicated physicians in the world to food allergic patients. I will be all over it. That is called progress. But, OIT is the best available treatment we have available at this time. I do OIT with people who are willing to partner with me in an effort to make life better and safer and have a life of more freedom. OIT certainly does not solve everything and I don’t think any of us claim that, but I strongly feel that it makes life so much better in so many ways. I will continue to offer this life-changing treatment with my eyes on the future. I will continue to implement the latest and greatest when it is available to the best patients ever. I am dedicated to my patients and nothing else.”
I was sold. THIS is who I want to partner with in my son’s OIT journey. I emailed the office in Utah for more information. Within an hour they were calling me and not long after that I was on the phone with the doctor himself. Our only obstacle now was distance. Neither my husband nor I were comfortable taking weekly flights with our son to Utah, in addition to it being cost prohibitive. Driving 13 hours each way, with hundreds of miles of nothing (can you imagine if he had a reaction with nothing around?) was also out of the question. Our enthusiasm faded as reality set in. Months passed. As of right now, our house is for sale. We had planned to move a few miles farther north, closer to my son’s school. While asking about blood tests in one of the allergy groups, I began speaking with a mom who moved to Utah temporarily while her son underwent treatments. All of a sudden, it was clear. The time is NOW. This is our chance to give our son what he needs the most…freedom. Freedom of this allergy, freedom to just be a boy…go to baseball games, travel with his family, and to go on sleepovers without mom inspecting his friend’s pantry first. This is our official announcement. When our house is under contract we will begin selling off our things, storing others and bringing a small trailer to Utah to sustain me, the kids and the dog for 6 months. My husband will stay here and continue to grow his business and live with his mom. She will be happy to have someone around the house. It will be a scary time, but an exciting, hopeful time. In the end, 6 months will be a blip in time that hopefully changes our lives. I plan to blog about my son’s process and progress. I will ask for your kind thoughts and prayers and hope that you all with be with us on this incredible journey!
*While we appreciate comments, try to keep them positive. Be assured this is a well-researched decision, one that is right four OUR family.