There are over 50 OIT family blogs published in our “Research & Learn“ library. They contain the journey of that family in OIT–some are in clinical trials, and others are in private practice with board-certified allergists. All the blogs are fascinating to read, full of wisdom and knowledge unique to that family’s journey.
ONE EXCERPT FROM THE BLOG:
Quest For Freedom
May 27, 2015
As many of you know, our family thinks of peanuts every.single.day. Not like a normal family does, wanting to have peanut butter and jelly every day or getting to eat a Snickers. I think of it killing Isabella. There is not an hour of my life that goes by that I don’t think of peanuts getting into Belly’s mouth and sending her into a severe reaction, or even death. I have seen it twice and I will worry about it every day of my life, even when she is gone to college, exploring the world and eventually, when she is a mom. I will worry about her until the day I die.
Living with a severe peanut allergy is sort of like living in a minimum security prison. Isabella can live a sort of normal life and play sports, go to school, go to birthday parties, hang out at the mall and have sleepovers. But, when the snacks come out after a game, or the school decides to have Pi Day or when her friends decide to go to Smart Cow, this is when Isabella goes into her lonely, dark cell, while everyone else gets to eat and carry on. She stays in that dark and lonely cell, without any hope of release. Until now.
About a year ago, I began to explore Oral Immunotherapy. Here is a good explanation of OIT from OITcenter.com
Oral immunotherapy (OIT) involves the regular administration of small amounts of allergen (peanut) by mouth. First there is rapidly induced desensitization (the ability to tolerate an allergen while on immunotherapy), and then, in time, induce tolerance to the allergen (the long-term ability to tolerate an allergen after immunotherapy is discontinued).
Patients undergoing OIT generally ingest a mixture of protein powder in a water or some other vehicle like, apple sauce. Treatments are typically started in a controlled setting (office, hospital clinic) where gradually increasing doses of allergen are given up to a targeted dose. Following this, in standard protocols, most dosing is done at home, and increased in the office weekly.
I had asked our allergist, who is very respected in the allergy community, and he said “absolutely not in my office”… He shut me down and moved on. I continued to explore and came upon a Facebook support group of kids going through OIT, for all different kinds of food allergies. I found myself hopeful in reading all of the success stories of these kids, who are able to eat up to 8 peanuts a day! They have graduated from the program and most importantly, their prison break was successful!
I have been searching for an OIT doctor and in the beginning of my search, the closest one I knew of was in Salt Lake City. I toyed with the idea of taking the 8 hour drive to our appointments. Then I found Dr. Soteres in Colorado Springs. He is currently the only doctor in Colorado doing this treatment. It took me months to make an appointment. I was encouraged to do so by moms in the OIT Facebook group. When I called I talked to him personally on the phone. I felt it was a good match! Next, was our consult. Isabella was very on board and excited to explore OIT. I was very nervous. But, in meeting with Dr. Soteres, I felt at ease and that he is a pioneer in this new frontier that no one in the Allergy community wants to take on. It’s risky, for sure. But, he wants these kids to be out of their prison cells and experience life without anxiety of dying every time they eat and that is what we want, too. Our goal in this is to rid ourselves of the anxiety we experience everyday. It does not mean she can go out and have a peanut butter and jelly sandwich. What it does mean is that we can go to restaurant and not fear the carelessness of a chef cross contaminating the food. It means she can participate in Pi Day, without worrying, it means she can go to DC Cupcakes in Washington DC next year when she travels with her class and not have to worry about cross contamination killing her.
OIT is not a cure. We know this. We are hopeful that she can graduate and have no side affects from eating something that we have avoided her entire life. Once Isabella reaches her goal (probably 4 peanut M&M’s a day), she will have to eat them for the rest of her life. I imagine us sitting at the table eating one of my favorite candies, together…. Peanut M&Ms! What a scary and exciting thought all at the same time! I am hopeful that there will be a cure for peanut allergy in her lifetime and this will just buy us some freedom until that miracle arrives.
Our first dosing appointment is this Friday at 9. I have been excited and a nervous wreck about it for weeks and now it’s just in two days. Last Sunday, at church, Pastor Scott gave an amazing sermon on worry. Oh how those words pierced and encouraged me all at the same time. I am going to hold on to those verses Scott delivered so eloquently and keep thinking of them as we go on our quest for freedom.
I’m writing this blog for Isabella, me and for others who may be interested in what we are embarking on. I appreciate all of your prayers and thoughts as we go through this. The build up phases lasts about 10 weeks, depending on how she does and then we go into maintenance, which is lifetime.
If you have any questions, ask me! I’m happy to share and educate others about this exciting adventure we are going on!
Erin
“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9
