For 12-year-old Rani, living with food allergies has had its ups and down – quite literally. Last summer, she was able to climb Mount Vesuvius in Italy – a 4,203-foot active volcano – during a family vacation, but days later collapsed on the street after accidently being exposed to a food allergen.
The incident prompted Rani’s family to reconsider oral immunotherapy (OIT). Weeks before their trip, Rani’s allergy physician, Jonathan Spergel, MD, PhD, Chief of the Allergy Program and an attending physician in the Food Allergy Center at CHOP, had suggested Rani may be a good candidate for oral immunotherapy (OIT).
OIT helps desensitize children to the foods they are allergic to by giving them small quantities of the allergen every day at home, and then gradually increasing the amount under medical supervision at the hospital. In many cases, daily ingestion of the allergen helps decrease the child’s sensitivity to the food. The goal is to help increase safety and reduce the risk of accidental exposures. The clinical team personalizes treatment to each patient and family’s goals.
At the time, Rani’s parents believed it was safer for her to just avoid the foods she was allergic to, including: milk, peanuts, cashews, sesame, peas, coconut and chick pea flour. She’d already outgrown allergies to hazelnuts, almonds and walnuts.
“Before our trip, we thought Rani could just avoid all of the foods she was allergic to,” says Sujaya, Rani’s mom. “But after she was hospitalized in Italy, we knew avoidance wasn’t enough.
Food allergies since infancy
Rani has been a food allergy patient at CHOP for nearly her entire life. At 5 months old, she had an extreme reaction after taking medication for an ear infection with baby yogurt at the encouragement of the family’s pediatrician.
For most kids, the yogurt disguises the taste and helps the medicine go down. Rani’s reaction was different: “She threw up until there was nothing left in her belly, and then fell asleep,” says Sujaya, Rani’s mom.
The family’s pediatrician referred them to the Allergy Program at Children’s Hospital of Philadelphia for further testing. Blood and skin allergy tests revealed Rani was allergic to milk, peanuts and many other foods.
In order to avoid future allergic reactions – which could range from vomiting and hives to anaphylactic shock – Rani’s family needed to remain vigilant, avoiding exposure to her allergens. As time went on and Rani’s food options increased, the list of foods she was allergic to also grew.
“There was a lot of hit-and-miss as we learned to navigate Rani’s food allergies,” Sujaya says. “Thankfully, CHOP was always just a call away.”
As Rani got older, she outgrew some of her food allergies, and gained others. For example, her family knew she couldn’t drink cow’s milk, but they’d hoped she’d be able to enjoy the nutrients from coconut milk instead. Unfortunately, they soon discovered Rani was also allergic to coconut.
After repeated trials and errors of food products over the years, Rani’s diet consisted mainly of chicken, eggs, vegetables, soy and a few lentils. “I just assumed it would always be like that,” Rani says. “I’d never eat ice cream or pizza or Halloween candy – stuff my friends told me was amazing.”
After the incident in Italy, however, the family – and especially Rani – wanted to try OIT in the hopes of expanding her diet and living a more normal life.
Rani began oral immunotherapy at CHOP in September 2019 with one food: baked milk. Each day, she ate one goldfish cracker; gradually building up to 2, then 4, then 8 crackers a day.
Once Rani could successfully tolerate baked milk, she moved on to oral immunotherapy with liquid milk. Rani received her first dose of cow’s milk from a tiny syringe at CHOP in November under the watchful eye of Antonella Cianferoni, MD, PhD, and Elizabeth Hanna, MSN, CPNP-PC.
“The whole oral immunotherapy team made the entire process really positive for us. They answered our questions, listened to us and adapted treatment to meet her specific needs.”
Every two weeks, Sujaya drove her daughter nearly two hours to CHOP for Rani’s oral immunotherapy, while Rani napped or read in the car. “I had to be stress free for 2 hours after OIT,” Rani says, “so most times I didn’t do schoolwork in the car.”
At home, Rani had to ingest the same amount of milk each day, until the next supervised “up-dose” at the hospital. All dose increases have to be done under medical supervision at the hospital in case of a severe adverse reaction.
In December, Rani began oral immunotherapy for peanuts. By March 2020, Rani was receiving OIT for milk and peanuts.
Then, COVID-19 struck: forcing a shut-down of all but the most essential services in Philadelphia and across much of the United States.
For the next three months, Rani continued OIT dosing for both milk and peanuts at home – but could not increase her dosage without in-person medical supervision.
Finally, in June, the family was able to return to CHOP for an in-person appointment. In July, Rani began maintenance dosing for both. She must eat 1 peanut each day and drink 4 ounces of milk. “I like the dry-roasted peanuts, but milk is pretty bland,” Rani says.
Soon after, Rani began oral immunotherapy for two additional allergens – sesame and cashew. This time however, she was allowed to receive her up-doses at CHOP Specialty Care, Princeton at Plainsboro, closer to her family’s home. There, Rani’s OIT is overseen by Rahul Datta, MD, PhD, an Attending Physician with the Food Allergy Center and the Division of Allergy and Immunology.
In October, Rani reached maintenance dosing for sesame. A month later she began maintenance dosing for cashews. Since then, she’s continued to eat 1 cashew and a half teaspoon of sesame flour daily, in addition to maintenance dosing for milk and peanuts.
In spring 2021, Rani could safely tolerate eating baked milk in foods and now doses with ice cream instead of plain milk. She’s enjoying the change.
The success of OIT has been a game changer for Rani. “Rani is more relaxed and more confident,” Sujaya says. “I see the positive effects OIT has had on her schooling. Before, her food anxiety held her back a bit. Now, she’s more outgoing and is taking on more leadership roles. I’m proud of how far she’s come.”
Heading into 7th grade, Rani says she feels the difference too. She’s lighter, more up-beat and positive about her future.
“I think it’s really cool I can now do something that seemed impossible a year ago – go out with friends and not worry about every possible food cross contamination.”
Like many others, Rani attended school virtually much of last year as COVID-19 infections heated up in New Jersey. While she missed seeing her friends in person, she enjoyed seeing them virtually, and had more time for computer coding – a new passion of hers. She’s also hoping to become multilingual – learning French at school, and Italian on her own.
“We can’t thank CHOP enough for everything they’ve done for our family through the years,” Sujaya says. “From Dr. Spergel in our earliest days, to Dr. Cianferani, Liz Hanna, Dr. Datta and the entire OIT team. They’ve given Rani new-found freedom and hope – and for that we will always be grateful.”