The fight against life-threatening food allergies requires innovative solutions that challenge the status quo. Traditional methods often fall short, leaving families in a constant state of fear and vigilance. The Tolerance Induction Program (TIP) offers a groundbreaking approach, providing hope and safety for those affected. This parent interview sheds light on the transformative power of TIP and its potential to save lives. We invite you to read Lisa's firsthand experience of her journey through food allergy management and the Tolerance Induction Program with an open mind to gain a deeper understanding of this revolutionary program.
What was your first experience with food allergies in your family?
My daughter reacted with her first solid food - peas. An angry red rash on her face. The same rash and eczema reactions happened with grapes, cantaloupe, plums, tomatoes, and more. At 5 years old, she ate fruit from trail mix with walnuts (a nut she had safely consumed for 4 years) and soon her tongue began swelling and her face was turning bright red. Like any confused parent, I soon tested the theory to see what would happen with another nut. I let her lick the shell of a pistachio and immediately she plunged her tiny hands into her mouth to “scratch” her tongue. She was swollen and bright red all over. I gave her Benadryl and waited for it to subside.
What was your pediatrician's recommendation?
Our family medicine doctor referred us to a local allergist. They wanted to start with a small panel for a scratch test. I requested a larger panel for more specific results. The results: life-threatening allergy to all tree nuts and various forms of seafood. In addition to a plethora of environmental allergies. The doctor told us to pick up an Epi-Pen, avoid all these foods…and good luck. It was devastating.
How did you deal with food allergies before FAI?
Before and even during FAI, I functioned in a constant state of fight or flight, never able to relax due to the overwhelming fear that my daughter could die from one microscopic crumb of food. The ONLY medical advice: avoidance. That single word still sends chills down my spine. It's equitable to “do your best, but it may not be enough”. With a life-threatening disability diagnosis, CAUSED by foods required to sustain life, it feels like a deathtrap.
What was the biggest challenge with the life of avoidance?
The fear of feeding your food-allergy child is paralyzing. Trying to live a life of avoidance meant I had to have 100% control of every single moment, every meal, every activity. 99% of meals were prepared solely by me. We rarely ate out - the risk was too great. Family holidays were extremely stressful because my family had to send me labels to read for EVERY single ingredient for EVERY appetizer, entree, salad, dessert, beverage, etc. It wasn't safe to eat store or bakery-made foods. It was a labor of love for everyone, and yet I was still fearful watching her eat every bite. And I was exhausted. Doing everything possible to keep her safe all day long, while working, raising my family and trying to keep some normalcy in our lives. Oh and trying to buy shelf-stable snacks for school; that meant trusting the manufacturer, quality control and transparent labeling. Mistakes in ingredient labeling are found daily …and my heart would skip a beat as these e-mails arrived - while I scoured my pantry to check for any matching products.
How did you find out about TIP?
I read about FAI in a newsletter from MemorialCare. The program was still new so, at that time we spent 2 years on the waitlist.
What was your TIP experience like?
TIP touched every emotion. From telling her “don’t eat that because it could kill you” to “you have to eat this to save your life”, each day brought new challenges. Elation at the possibility of a true life-saving medical treatment program to paralyzing fear about feeding my child the very foods I thought could kill her. But the FAI medical team establishes a specific treatment plan for each child. Logically, it makes sense. Eat related foods to your allergen to build up tolerance. Then use microscopic amounts of food as “doses” like medicine. Starting TIP gave me hope that my daughter could someday be more “normal” and able to eat anything she wanted. This end goal got us through many dark days; like not eating at parties; being excluded from events; not traveling; not eating out at restaurants. Just like parenting, the TIP days are long, but the years are short. And worth every single exhausting exhilarating moment. When Cooper graduated TIP in December 2020, a whole new world opened up for her…and our family. Going out with friends alone (me not in the shadows watching for a reaction); going to sleepovers (and me actually sleeping while she was gone) and finally her feeling more like a regular kid. Big sister Olivia also experienced freedom. She played a vital role in Cooper's safety; always watching and protecting her. Feeling the stress of keeping her safe was finally letting up.
How is life different today for Cooper Today?
Cooper is a thriving college student living a life of food freedom, only thanks to TIP and the FAI. Instead of carrying pre-made meals, she eats on campus, goes out to eat with friends and joined a sorority with lots of social gatherings. Food is no longer feared and avoided. She can eat absolutely anything she wants - something the rest of us have taken for granted. Cooper was inspired to write and publish a book “I Can” that inspires children to realize what they “can do” instead of all the things they “can’t”. Food allergy kids are always told “you can’t eat that; you can’t go there; you can’t buy that; you can’t wear that makeup”. She gives a voice to kids to prompt them on all the other things they can do
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What would you say to pediatricians and allergists who are considering the program or who may be skeptical about the program?
I desperately encourage other allergists, pediatricians and family medicine doctors to openly look at the data. These numbers represent actual children who now eat their allergens and have graduated TIP. Together, these physicians can save the lives of more children. Giving them and their families their lives back. This TIP approach is unlike other OIT protocols. Keep an open mind and willingness to learn new ways of treating this disease.
What is your message to the parents who may be considering this program?
As a food allergy parent, I would do anything for my daughter. From learning to decorate cupcakes for every kids birthday party to carrying a tote bag of safe snacks and Epi-pens 24/7; I was her self-declared protector of evil. My superhero skill was reading labels and trusting my gut. But she is the real hero. Showing bravery beyond measure. Living each day as best she could despite the constant fear of food. She thanks me often for the dedication we made to TIP and the Food Allergy Institute, but I thank her for trusting the program and medical team. Without their expertise, we would still be living in fear every moment, of every day, of every meal, of every bite.
We have immense gratitude for parents like Lisa who place their trust and dedication in our team and the Tolerance Induction Program. What we provide is more than just a medical intervention—it represents hope for families struggling with the daily fears and restrictions of severe food allergies. The firsthand experiences shared in this interview illustrate the profound impact TIP can have, not only in alleviating the constant state of anxiety but also in restoring a sense of normalcy and freedom to children's lives. Pediatric physicians have the power to advocate for and implement groundbreaking treatments like TIP, reshaping the future of allergy management.
Physicians often share concerns regarding program cost, however, making treatment recommendations based solely on cost undermines the potential for life-changing outcomes. When asked, families prefer to decide how to prioritize their own financial resources. The true value of TIP extends far beyond immediate expenses; spread over a lifetime of health and freedom, the investment becomes invaluable. Families are resourceful and our team will share the tools and assistance available. As more medical professionals embrace TIP, its availability will expand globally, making it accessible to even more families. This expansion promises a future where food allergies no longer dictate the lives of children and their loved ones.
By exploring new solutions and keeping an open mind, primary care physicians can be instrumental in offering families the opportunity to reclaim a sense of security and joy. The financial considerations, while important, pale in comparison to the lifelong benefits and peace of mind that TIP provides. Your willingness to embrace and support innovative programs like TIP will pave the way for a healthier, safer, and more hopeful future for children everywhere.