As many of you know, three years ago, after much research and prayer, my son Ben started a clinical research trial for desensitization to his severe peanut allergy. Our oralimmunotherapy (OIT) clinical trial journey began at Johns Hopkins Children’s Hospital in Baltimore, Maryland and has ultimately brought us to Mt. Sinai’s Children’s Hospital in New York, New York.
The Impact Peanut Study has three phases. Phase 1 is the escalation phase that begins with a very minuscule amount of peanut protein that gradually increases in small increments under inpatient supervision to build tolerance. You can learn more about the earlier days of our journey by reading past posts here, here, here and here.
The second phase of the study is called the maintenance phase. During the maintenance phase of the trial my son drank a daily dose of 2000 mg of peanut protein under my supervision and with quarterly appointments with the hospital staff. After months and months of doses, we have reached the end of the maintenance phase. It’s kind of amazing actually. In hindsight, even with the initial days of symptoms and concerns, our participation in the trial has gone by very quick. It’s stated that in parenthood, “the days are long, but the years are short”…so is true with oralimmunotherapy (OIT).
The next and final phase of the trial is the avoidance phase. During this phase, we continue to carefully avoid any contact with peanuts and we stop taking the daily dose. This phase will last for six months. In order to transition into the last phase of the study, Benjamin had to participate in two, blinded oral food challenges. The goal of the food challenges was to see if Ben’s threshold for exposure to his allergen has changed.
During Benjamin’s initial oral food challenge at the start of his participation in the study, Ben went into anaphylaxis after ingesting approximately 1/2 of a peanut (i.e. Hives, vomiting, respiratory distress).
For three years I have single-handedly gone to close to 50 appointments, with his baby brother on my hip and have given Ben over 900 home oralimmunotherapy doses, handling their side affects. My love and commitment to my son and to this clinical research study is and continues to be immense and unwavering.
Today, my brave little boy faced his second oral food challenge and tolerated the equivalent of 16.6 peanuts without a single symptom. Nothing. This is quite honestly, nothing less than a medical miracle.
We don’t know what will happen in Phase 3 (the next six months of no maintenance dose) or if this new miracle allergen tolerance will remain during that time? We don’t know if the absence of the daily treatment will cause his allergy to come back in full swing? This is where we continue to place our trust and confidence in the plan that God has for us. We will know more about how Benjamin’s body responds in six more months when he does an additional set of oral food challenges.
So until that time, today I celebrate our results in a BIG way and I stand in awe of God and the clinical trial He led us too at just the right time. A trial filled with MDs and Nurses that are gifted with His wisdom to make real life miracles happen. A clinical trial that has protected my son and lessened the fear in an allergy mamas heart. A clinical trial that has potentially saved my son’s life and that is paving the way for a cure for life-threatening food allergies in his lifetime.
Thank you, God! ❤️
Thank you, Johns Hopkins, Mt. Sinai, our family and friends who have shown us so much support through the trial! We are blessed beyond measured and humbled by the amazing and beautiful love that God has for us.
I’d love to hear from your family with questions or with comments about our OIT journey! We have shared it with open hearts for you because we know all too well that happy hearts and happy families surely take a village filled with love!