Food allergy mom and advocate, Hillary Tolle Carter, shares her family's Oral Immunotherapy (OIT) journey. Her youngest son had a terrifying anaphylactic reaction after eating 'certified gluten free' chicken nuggets that should have been safe. Taking every precaution to avoid her sons' allergens was clearly not working. This incident spurred her family to pursue OIT.
My older son is currently eating one peanut and almost one cashew a day. My younger son is consuming a wheat pretzel, half teaspoon of milk, and powder forms of peanut, cashew, and egg every day. These are their scariest food allergies – and my boys are conquering them.
How did we get here? Oral Immunotherapy, commonly referred to as OIT.
What is OIT? According to the American Academy of Allergy, Asthma & Immunology (AAAAI), “OIT refers to the medically supervised therapy of feeding an allergic individual an increasing amount of a food allergen with the goal of increasing the threshold that triggers a reaction.”
While we are all familiar with the statistic that 32 million Americans have food allergies, I was shocked that a survey of a geographically, clinically, and socioeconomically diverse, nationally-representative sample of US households – including both adult patients and caregivers of children with food allergy – found that 72 percent did not know about OIT. What?!
Our community needs to know we have options! This is why I’m sharing our journey with you…
If you had told me a few years ago that we would be where we are now, I wouldn’t believe you. My boys both had LONG lists of positive test results for a variety of allergens, so I didn’t think it was possible for us. But, as you might have read here before, we went on an oral food challenge (OFC) crusade over the last few years to narrow that list down to our TRUE allergens.
Then The Big One happened. My younger son had a terrifying anaphylactic reaction to gluten cross contamination in certified gluten free chicken nuggets. He required four rounds of epinephrine and an overnight hospital stay. We thank God that he survived. But something in me changed. “Avoidance” is no way to live our lives. Especially when we do everything right, but bad things still happen.
Around the same time, my incredible food allergy mama network connected me to Debbie Taback and Kim Yates, co-founders of Latitude Food Allergy Care in northern California. Latitude is one of the only food allergy clinics I know of that combines food allergy expertise and empathetic patient care to create personalized testing and multiple-allergen treatment plans for children and adults.
I interviewed Debbie for my YouTube series with FARE to discuss our shared stories of food allergies, eczema, and advocacy. I loved hearing about this innovative new food allergy treatment center – created BY food allergy families FOR food allergies families – with clinically proven, evidence-based protocols coming straight from Dr. Kari Nadeau’s groundbreaking work at Stanford University.
After that interview, Debbie scheduled a call for me to finally “meet” Kim, even though I’d known about her for years. Not only was I astonished to learn more about Kim’s story and Latitude’s patient-centric mission, but Kim told me they could treat BOTH of my boys. That call changed my life.
Full confession here – I cried right there on Zoom.
My family and I were on a plane to California within weeks. To our delight, the boys made it through even more OFCs and PASSED several allergens including almond, soy, and sesame (for my younger son) and low dose OFCs (meaning he could tolerate cross contamination) to pea, chickpea, and lentil for my older son. We met the entire amazing clinical team and created a plan together.
My older boy would do OIT for his remaining allergens – peanut and cashew. My younger boy would do OIT for peanut, cashew, wheat, dairy, and egg. Our goal is to get the boys to a “maintenance” dose that will protect them in case of accidental ingestion of their allergens. We want to take anaphylaxis off the table.
After six months of daily dosing (starting at a tiny dose and then “updosing” under medical supervision about every two weeks in increasing amounts), my older son has reached the maintenance dose of one peanut a day, and has almost reached his daily maintenance dose for cashew. My younger son is already consuming much more of the same allergens that caused horrific reactions in the past.
The process is a marathon. It requires diligence, scheduling, and focus. But OIT really does become part of the daily ritual, and for us, it has been completely worth the time and effort.
I cannot begin to articulate all the positive changes in our home.
Everyone’s anxiety levels are lower.
We feel much more comfortable with play dates at other people’s homes.
We have signed our sons up for a morning sailing camp program this summer where they will have some hard-earned independence.
We no longer worry about specks of food on tables or chairs.
My boys have a new level of safety in the world, and knowing that has saved all our lives.
We have PEACE. And we are not even finished. Yet!
(Of course, I still read every label, cook most of their food from scratch, and carry their epinephrine and other medications with us at ALL times…)
We live on the east coast in the US, and flying back and forth to California every two weeks for updoses was not in the cards for us. I am eternally grateful to our home allergist for partnering with Latitude to oversee our updoses, thus making this program possible for us.
If you live in northern California, you are in luck, since there are now FIVE Latitude Food Allergy Care locations in the San Francisco area. I also have wonderful news! Latitude will expand to New York City this summer, with plans to expand to multiple markets in the coming years, becoming even more accessible to families nationwide. This company is revolutionizing food allergy care, and I share our story especially for families who might be interested in this type of treatment.
One dose at a time, one day at a time, one peanut (and pretzel, and sip of milk) at a time. Everyone deserves the opportunity to be safe and have peace.
About the Author: Hillary Tolle Carter is a corporate communications specialist with 20 years of media, public relations, and advocacy experience in a career that has spanned agency, corporate, and non-profit roles. Hillary serves on the Board of Directors for Latitude Food Allergy Care and the Board of Governors for Food Allergy Research and Education (FARE). She is the host of Take Action! with Hillary Carter, a YouTube series produced in collaboration with FARE. She chronicles her food allergy parenting journey at hillarytollecarter.com and on Instagram @hillarytollecarter.
Images: Photographer Stuart Thurlkill and the Carter family