Fear Not
Oral immunotherapy can change your life when it comes to life-threatening food allergies.
Her oldest son had been gone several hours at a teen costume ball last Halloween when Katy Patrick suddenly realized she hadn’t thought once of his safety. Alex was away from home, but, thanks to oral Immunotherapy, he was in less danger than ever before from his life-threatening peanut allergy.
She fell on her bed, sobbing with relief; 16 years of bottled-up feelings poured out. A nervous system on constant high-alert finally relaxed as she started letting go of the stress that goes along with food allergies.
Oral immunotherapy isn’t a cure but a food allergy treatment that desensitizes the immune system and gut from reacting when an allergen is ingested. A board-certified allergist supervises continuously increased doses of the food over six to 12 months. A final food challenge of double or triple the daily amount may allow the patient to freely eat their allergen, but research is still ongoing if dosing is for life.
For Patrick, even though her son isn’t free-eating peanuts yet, OIT is a miracle. It changed her family’s life so radically that in a mere four months’ time, she brought their story to market in the newly released Crushing the Peanut: Food Allergy Life Before and After Oral Immunotherapy (OIT).
The book is less how-to than how-it-felt-to. Patrick shares her roadmap and resources on the path to this freeing treatment.
What Patrick would change if she could:
She wouldn’t worry so much. “It was so scary to start OIT; that was actually the hardest part,” she says. “If I could have trusted everyone on the other side of treatment, that it was going to be okay … it was so hard to have him eat the food he’d been avoiding his whole life.”
She wouldn’t wait to start OIT. “It’s hard to say, because there are still some good things that exist in our life because Alex was allergic, but I know we could’ve found OIT a few years earlier. It’s never too late or soon to start.”
She would get another opinion earlier. She recommends extensive research for parents of allergic kids. “I didn’t revisit the advice I was given; Alex’s peanut allergy just became a part of life,” she says. “Just like anything life-threatening, get a second and third opinion. If you’re just finding out that your kid is allergic, it’s a whole new world. It no longer has to carry the lifelong sentence it used to.”
If OIT is so safe and effective, why isn’t everyone doing it?
OIT is not for everyone — yet. Patrick says due to costs, travel issues, fear, lack of a nearby OIT allergist or misinformation, some people don’t explore OIT. Studies show OIT is 85 to 90 percent successful, and it is changing the face of food allergy. Uncontrolled asthma or other contraindications can halt OIT’s success, but no one is too allergic to be a good candidate for OIT. In fact, that is one of the top myths. “There is some logic to the thought that the more severe your allergy, the more you need OIT to make yourself safe,” Patrick says.
Most allergists are not trained in OIT. “Private Practice OIT allergists have a different mindset; they want to offer hope rather than counseling patients to just avoid their allergen,” Patrick says. “Allergists offering OIT are available 24/7. Not every office can offer this type of care.”
Since OIT is just consuming a food, it can never be FDA approved and mass marketed. Patrick speculates that could be keeping it out of the headlines. “I don’t understand allergists or advocates who choose not to share OIT as an option,” Patrick says. “My goal is to share our truth — that using OIT worked — and point others to the thousands of food-allergic that are being treated now.”
The choice to begin OIT, while not easy, hinged on the success rates and the anticipation of living fear-free at last. “We knew he was going to have another accidental ingestion,” Patrick says. “He already had five anaphylactic reactions. To start OIT we were just choosing when it was going to happen. We were going to do it safer than any prior accidental ingestions, with a medical team, in a minuscule, monitored amount.”
Taking that chance has meant Alex finally crushed the peanut’s hold on his life and, Patrick says, “My son now lives what I like to call ‘happily ever allergic.’”
OIT Resources: In addition to Patrick’s book, an active online and social media presence is helping spread the OIT news. The most comprehensive site, Patrick says, is oit101.org, a clearing house for research, success stories, support groups and more than 80 U.S. board-certified allergists offering OIT in private practice. She also recommends two Facebook groups, OIT101 and PrivatePracticeOIT.