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When you have a child with food allergies, many of the freedoms you used to have as a family are stripped from your daily reality. Simple activities like eating at a restaurant, your child going to school, and attending a birthday party are no longer carefree—instead, you have to do research before you venture out and then keep vigilant to ensure your child does not ingest any food allergen. In many ways, fear as a parent is always in the back of your mind. It takes a village to manage your food allergies and The Everymom wants to be part of your support system by providing you helpful tips for parents whose kids have food allergies.Â
Managing a Food Allergy with Oral Immunotherapy
After you get over the initial shock of finding out your child has food allergies, you then decide on a plan of action on how to manage their allergies so they live a safe and happy life. Once you delve deeper into the world of food allergies, you may discover an alternative form of treatment known as oral immunotherapy (OIT). According to Dr. Tammy Peng, UCLA board-certified doctor in pediatrics and allergy and immunology, oral immunotherapy “is a therapy that involves feeding people with food allergies the food that they are allergic to in small increasing amounts to help desensitize their immune system to the food allergen.”
For patients to pursue OIT, they attend in-person clinic visits where they receive the confirmed food allergen in incremental doses while the allergist observes and supports any reactions that may arise. The majority of OIT is done at home in between clinic visits where families continue to give the child the approved daily dose of the food allergen. The goal is for families to reach a daily maintenance dose indefinitely to avoid the child having a severe reaction or anaphylaxis. OIT is not a cure—it’s an alternative therapy used to help families manage their child’s food allergies.Â
Parents of children with food allergies can do extensive research about OIT, but they may also be wondering how it really goes for the kids and their families. We spoke to two mothers who have pursued OIT. We hope that by sharing their stories, you can be more informed on how to manage your child’s food allergies.
Priscilla, Zacky, and their family. (Source: Priscilla Hernandez)
Meet Priscilla and Zacky
Zacky’s Food Allergies: Peanuts, tree nuts, shellfish, legumes, sesame, and avocado.
Priscilla recalls discovering these food allergies when her son Zacky was a baby through exposure to these foods, which would result in some form of a reaction from hives to labored breathing. She recounted, “When Zacky was a newborn baby, he suffered from severe eczema throughout his body and he would continually cry inconsolably. We had no idea what caused it. Food allergies were furthest from our minds since no one in our family had ever experienced it.”
It was only when he got a little older that she was able to witness first hand his reaction to certain foods. Through a blood test and later an extensive panel that also included a skin test, Priscilla was able to get more detailed information on Zacky’s food allergies.Â
With Zacky now in school, Priscilla’s family has had to adjust to entrusting others to be vigilant of his food allergies while also empowering Zacky to advocate for his own needs. “It is a constant vigilance that must be had to read labels [and to] re-read labels to ensure the allergen is not in the food. Those serving food must be on constant alert,” Priscilla shared.
The road hasn’t always been easy for Zacky to navigate, as she recalls two incidents at school when Zacky was exposed to a food allergen and had to be administered an EpiPen. Luckily, he was given immediate proper medical care after the reaction. He now brings his own lunch, and although his food allergies have certainly impacted him, he is managing and thriving at school.Â
Zacky’s Experience with Oral Immunotherapy
Zacky had a brief experience with OIT that “entailed extensive testing and then receiving increments of [the food] allergen into your diet. This treatment involves gradually increasing the dosage as you build tolerance.” However, she said that they didn’t proceed with the therapy largely due to the pandemic. She also found it challenging because if you stop treatment for a few weeks, you must start from the beginning.
Additionally, she admitted the “possibility of provoking an anaphylactic reaction is a real possibility” as well as having eosinophilic esophagitis as a result of OIT. She understands OIT is not a cure and is instead a “lifelong maintenance effort” and something that just wasn’t the right fit for her family. She shared that OIT requires “a lot of work, diligence, and faith. Feeding your child the allergen puts immense stress on the caregiver since it is so counterintuitive.” She wishes there were less risky options for families living with food allergies.Â
Meet Caroline and Luna
Luna’s Food Allergies: peanuts, cashews, and pistachios.
Currently, Caroline’s daughter Luna only has allergies to cashews and pistachios, as she had a successful experience with OIT to treat her peanut allergy. Caroline discovered Luna’s allergies when she gave her salted cashews when she was 3 years old, which resulted in Luna getting hives and coughing within 15 minutes of ingesting the allergen. After seeing a food allergist who conducted further testing, her allergies were confirmed.
“The scariest part about having a child with food allergies is when they are so young and are not capable of advocating for themselves yet. Trusting other individuals to be aware of your child’s food allergies does not come easy for me. Now, Luna knows to always ask if the food given to her has cashews or pistachios,” Caroline shared.
Source: PNW Production | Pexels
Luna’s Experience with Oral Immunotherapy
Luna has been undergoing OIT for seven months now. They started her with OIT for her peanut allergy, as her bloodwork and skin test showed less of an allergic reaction to those foods. After a series of clinic visits and feeding her peanuts in incremental levels, Luna no longer appears to have an allergy to peanuts. Carolina is happy to share Luna now eats them regularly in large amounts with no allergic reaction. She is currently undergoing OIT for her allergy to cashews and pistachios and, so far, she appears to be responding positively to the treatment. Luna is tolerating three whole cashews daily without any allergic reaction. She will be going in the summer for an updosing in-clinic regimen to double the amount.Â
Caroline is hopeful that her daughter will be able to tolerate cashews and pistachios long term. “Oral immunotherapy is a daily commitment of love for your child who has allergies. It is not easy and can cause anxiety to give your child the known allergen. We put daily alarms on our phones to remind us to feed her these tree nuts because you must always be diligent with the dosage,” she said. But her family feels the benefits outweigh the risks and have proof with how Luna can now eat peanuts freely. “We now can breathe a little bit easier knowing that at least she can have peanuts and can tolerate a small exposure to cashews and pistachios. We are thankful OIT has worked well for Luna thus far,” she said.
How Both Moms are Currently Managing Their Child’s Allergies
Priscilla said currently, her family manages Zacky’s allergies through avoidance of the actual allergens. She is dedicated to making his meals with alternative ingredients so Zacky can enjoy food safely. She also inserts fun into holidays by having “teal-themed” holidays like Teal Halloween, where Zacky gets to exchange candy for activities, toys, and allergy-friendly food. The color teal represents food allergy awareness.Â
She has also taken an active role in her state legislative process to lobby for legislation that would make schools safer for kids with allergies. She is dedicated to empowering Zacky “by teaching him to advocate for himself and to never be afraid to let people know about his allergies.” Most importantly, Priscilla makes sure her son finds alternative ways to participate in social engagements and fun childhood experiences.
Because Luna has responded well with OIT, Caroline plans to continue this form of therapy with Luna’s allergist so that they can reach a stage where the risk of Luna having a severe allergic reaction can be greatly reduced. Caroline makes sure to give her regular peanut snacks to ensure her body continues to tolerate it. She’s also dedicated to continuing the daily cashew treatment in the hope that her immune system will accept the allergen in her system. She shared, “Hope is a powerful tool when managing food allergies. When kids are young, their bodies are constantly changing, so we hope that through OIT, her body will learn to accept small doses of this allergen. We will continue with this OIT regimen as an additional layer of security for Luna as she gets older.”
Words of Advice About Having a Child with Food Allergies
Priscilla remembers how overwhelmed she felt when she found out about Zacky’s allergies because she didn’t know anyone else with food allergies. She has since learned extensively about the (online) resources and support groups available to food allergy families. She shared that there is a strong and engaged online community that can keep you informed and help your family not feel so alone.
Priscilla said she has gotten “involved in organizations such as Food Allergy Research and Education (FARE) and has met some amazing people. “I have been able to join a collective effort to advocate for those with food allergies and find potential alternatives for the future of those with food allergies,” she said. Her message to families who have to deal with food allergies is to not panic, get informed, and get involved. It is through her efforts that her family lives “a better, more comfortable quality [of] life.” She does it all for her Zacky.
Caroline wanted families to know that life can be wonderful, fun, and beautiful even though your child has a food allergy. It may not always be as carefree, but “the best things in life are worth it.” Caroline wants families to be open to educating themselves on therapy options and to speak with their food allergist to inquire if OIT is a viable option for their family. “Doing your own research and being your child’s strongest advocate” are two pieces of advice Caroline suggested. She also wanted to remind families to empower their children to be involved in the advocacy needed to support them. After all, the child will be living with this diagnosis for the foreseeable future, so it’s important to give them the tools and strategies to live a happy and safe life as much as possible.
