Eight-year-old Genesis, who goes by Genna, longs for the day when she can bring a PB&J sandwich to school like her classmates. For now, though, her mom, Neysla, takes special care to pack her almond butter and jelly sandwiches.
PB&J might be an American staple, but you won’t find it in Genna’s lunchbox — or anywhere near her allergy-free lunch table at school. Genna is among nearly 1 in 50 children in the U.S. who are allergic to peanuts, one of the leading causes of food allergies, that often causes serious allergic reactions.
For Genna, any food with peanuts in it that even grazes her lips can cause an allergic reaction — something her mom said they learned the hard way when Genna was about 1 year old.
“Genna had her first severe allergic reaction after eating a piece of cake that had peanuts in it at a birthday party,” Neysla said. “Thankfully, we were able to get her quick treatment for her allergic reaction, but we were told by her doctors at the time to steer clear of anything with peanut because it could cause another life-threatening reaction.”
Life with a peanut allergy
Over the years, Genna has learned to avoid foods with peanuts, to read food labels carefully and double-check with her parents when she’s unsure. She never goes anywhere without her EpiPen, an auto-injectable medication that is the treatment for anaphylaxis or a serious allergic reaction.
“It’s very stressful because Genna always loves to try new foods but has to be so careful,” Neysla said. “Recently she tested out a food on her lips at a party and ran over to me crying with swollen lips.”
New oral immunotherapy reduces effects of peanut allergy
In September 2021, Neysla and her husband, Connor, received some promising news from Genna’s pediatrician. Phoenix Children’s was offering a new oral immunotherapy (OIT) called Palforzia, the first FDA-approved treatment for peanut allergies in children ages 4 to 17, and Genna qualified to begin treatment.
“Palforzia is a treatment to help reduce the severity of allergic reactions, including anaphylaxis, that may occur with accidental peanut exposure,” said Heidi Schmidt, an allergy and immunology physician assistant at Phoenix Children’s. “While patients must continue to avoid peanuts and carry epinephrine devices, it allows families to have less anxiety related to going to restaurants, sporting events, ice cream parlors and more, due to the lower risk of a severe allergic reaction.”
Genna got a referral to see Dr. Cindy Salm Bauer, the medical director and section chief of allergy and immunology at Phoenix Children’s and was one of the first few patients at the hospital to begin OIT.
Understanding the OIT process
To begin treatment, Genna and her family had to make a significant commitment. Genna’s treatment would involve a series of in-person clinic appointments, six months of daily consumption of the drug and then continuing the medication for the rest of her life — or until a new therapy or cure is found.
“We had to work around vacations and school schedules to make sure we could be at the clinic for updosing; that’s when Genna needed to increase the amount of medication,” Neysla said.
The medication comes in a powder form contained in capsules and is mixed with soft food like applesauce, yogurt or pudding. At first, Genna would start with a very small amount, roughly 3 milligrams (mg) to slowly introduce her body to the allergen. Over the course of treatment, the dose of the allergen would increase, allowing her immune system to be exposed to more of the allergen and decreasing sensitivity to it. Updosing was done at the allergy and immunology clinic under the careful watch of clinicians who could monitor for any side effects.
“We really get to know families very well during this process as we see patients every two weeks for the dose to be increased in the clinic, and these visits happen 12 times,” Schmidt said. “Sometimes we have to make modifications if there are symptoms that occur, so the therapy can take slightly longer than 12 visits. Once updosing is completed, we continue to monitor patients every few months to ensure it’s still effective and they are following their treatment plan.”
Allergy staff and child life specialists eased fears
When Genna first started the treatment process, she was all smiles and had lots of questions for the Phoenix Children’s allergy providers.
As her initial treatment began, however, Genna’s excitement soon turned to discouragement when she started having side effects like itchy lips and she felt scared. That’s when her medical team and child life specialists stepped in to ease her fears.
The child life team helped her understand that what was happening was safe and normal, and helped her cope with anxiety during some of her visits. Genna even made her own ID badge to wear to her visits.
“It was so awesome that they could bring in the child life specialists,” Neysla said. “They explained every step of the process, what she might experience and really made her feel at ease. Now she asks for them every time we go.”
After her initial appointments, Genna quickly got the hang of the therapy — even reading the OIT manual cover-to-cover.
“Genna has such a great character and demonstrates a positive attitude and understanding beyond her years,” Schmidt added. “She is always so happy, and it is quite rewarding to care for her.”
Neysla was not surprised that her daughter took a strong interest in her treatment.
“Genna is super involved and curious — she wants to know what’s being given, how the powder is made, how she might react,” Neysla said. “She’s really fascinated about medicine. Who knows, she may end up in medicine someday.”
Medicine has always been a part of their family — Genna’s grandfather is an emergency medicine physician in Peru — but this experience has also inspired her mother, who recently graduated from nursing school at Arizona State University.
“We spent a lot of time at Phoenix Children’s while Genna waited for any potential reactions, and I was so impressed by the people who work here,” Neysla said. “I like how Phoenix Children’s treats every patient. They take their time to listen to parents like me and kids like Genna — it’s a good environment. So, when I graduated, I told myself that I needed to find a job here.”
In January, Neysla began working in the cardiovascular intensive care unit at Phoenix Children’s helping critically ill children with cardiac conditions who are admitted for surgery, cardiac catheterization or illness.
PB&J still out of the question, but that’s okay
Genna started with just 3mg of peanut powder in September 2021 and will soon reach her final updose of 300mg — about the amount of a full-size peanut kernel a day — just before summer. Once she’s reached 300mg, Genna will continue the regimen at home on a long-term basis—something she takes very seriously.
Although Genna won’t be eating typical PB&J sandwiches, she is able to face her day with less fear and anxiety if she’s near someone eating one.
“Genna understands she can’t have peanuts, but what we are doing ensures she wouldn’t have as severe of an allergic reaction if she does eat a peanut and that’s great news,” Neysla said.
Her care team is happy to see her doing well.
“We are so excited to be able to safely and effectively offer treatment for peanut allergy at Phoenix Children’s. In well-selected patients, like Genna, peanut oral immunotherapy lessens concerns about accidental exposures, reduces severity of allergic reactions, and overall improves quality of life for peanut allergic children and their families,” Dr. Bauer added.
Learn more about allergy and immunology at Phoenix Children’s, click here.