Oral therapy for food allergies making inroads in the region
Sitting in an exam room Friday morning at Allegheny General Hospital, Eva Wulff was drinking KoolAid through a syringe. “It’s up to two,” said her mom, checking out the milliliters marked on the side.
“And then three and then four and then five and then six,” said Eva, demonstrating not only her kindergarten counting ability, but forecasting her path to a future without constant worry about a life-threatening peanut allergy.
Six-year-old Eva of Mt. Lebanon is one of just a few children in Pittsburgh receiving oral immunotherapy (OIT) for a peanut allergy.
Dissolved inside Eva’s fruit punch Kool-Aid was a minuscule amount of peanut powder. Two months ago, it would have provoked an allergic reaction, but now she is able to tolerate it.
“It’s just amazing what I’m seeing the human body do,” said her
mom, Sara Wulff.
In principle, OIT is not controversial. The theory behind it is the same as for allergy shots, which have been around for a century: repeated exposure to an allergen will desensitize the body’s reaction to it, making it easier to tolerate.
But in part because it involves feeding children a life-threatening allergen, usually at home without medical staff present, OIT remains out of the mainstream. It is not currently recommended in a clinical setting by the American Academy of Allergy Asthma & Immunology “because of inadequate evidence for therapeutic benefit over risks of therapy.”
But it is also becoming increasingly common.
For years, the closest doctor to Pittsburgh to see OIT patients was in Detroit. Recently, doctors in Cleveland and Cincinnati have started offering it, and Allison Freeman, a physician at AGH, started seeing patients clinically in January.
Children’s Hospital of Pittsburgh of UPMC is participating in clinical trials of two food allergy immunotherapy products, one an oral dose and one a patch, but does not accept patients outside of those in clinical trials.
Dr. Freeman, who actually offered it in a previous job, as well, before coming to AGH in 2014, feels comfortable at this point that enough research has been done.
“I’ve been watching the literature for 15 years,” she said. “One of the reasons I decided the time was now is because there’s some pretty good info on dosage, and some pretty good studies all saying the same thing. The risks have turned out to be lower than we worried.”
About 80 percent of OIT patients in research studies have successfully been desensitized to peanuts. Many of the remaining 20 percent drop out because of unpleasant reactions or difficulty keeping up with the OIT regimen. The younger the patient, the higher the OIT success rate. Dr. Freeman currently won’t attempt it in patients older than 30.
The therapy starts in a marathon six-hour appointment (Eva completed an entire 1,000-sticker Pokeman book) in which patients are fed increasing amounts of peanuts every half-hour to determine the correct starting dose.
Satoko Hoppo, mother of 9-year-old Karin Hoppo, who was also sitting in the waiting room with Eva, said she was so nervous about her daughter being fed peanut products at the first appointment that she didn’t sleep the night before.
“Many of our teenage patients are absolutely a nervous wreck,” Dr. Freeman said. “They’ve been told that if they put it in their mouth they will die, which may have been true, and now they have to put it in their mouth.”
Patients usually start with peanut powder that is dissolved in liquid, moving up to peanut capsules and then whole peanuts, which they take every day at home. They come back to the office every two weeks for “updosing” — where they are monitored for an hour after their dose is increased.
When they take their dose at home, they are restricted to “quiet time” for two hours after, because exercise increases blood flow, which makes an allergic reaction more likely. It takes at least seven months of updosing for patients to reach their target “maintenance dose,” usually eight peanuts per day.
Leland Clark, a Butler lawyer whose son, Tristan, had an “off the charts” peanut allergy, had been researching OIT for years. In 2014, his son went into anaphylactic shock while they were driving on Interstate 79, and Mr. Clark had to pull over to give him an EpiPen injection. They had been at a relative’s house where peanuts had been eaten on a couch the night before. Tristan had sat on that couch and must have later ingested residue on his hands. It became clear to Mr. Clark after that incident that avoidance was not going to be a successful strategy.
Because OIT wasn’t then offered in Pittsburgh, he drove his son to Detroit every other week, sometimes leaving Butler at 3 a.m. to get there for a Saturday morning appointment.
Tristan successfully completed OIT in 2015 and has been eating eight peanuts per day since.
“We’ve gone from being paranoid all the time that he could get deathly ill from an unseen allergen to that he can live a normal life,” Leland. Clark said. “Now, with him being desensitized, he could walk through a Texas Roadhouse with the peanuts being everywhere. He can eat a peanut. He can eat cookies baked with shared ingredients.”
After three years, some patients try going off the maintenance dose for a month to see if they can eat peanuts without it. Only 30 to 40 percent are successful.
Tristan, 7, also had serious allergies to milk and eggs and recently completed similar therapies for those foods. This month, for the first time ever, the family dyed Easter eggs.
Still, Leland Clark said, the treatment isn’t for everyone.
“I really want any parent to take this very seriously — you’re messing around with an allergen,” he said. “You can’t just give them their dose and have them go off and play. It’s a very serious treatment.”
Tristan has had reactions to his maintenance dose on a few occasions — once when his parents didn’t realize he was wrestling in another room with his sister, and once, even past the two-hour mark, when he was running around outside on a 90-degree day.
Dr. Freeman will not see children younger than 2½ for the treatment or children who aren’t sufficiently verbal, and requires that a parent supervise the post-dosing period at home every day. For that reason, children or teenagers who are traveling away from home or going to a sleepover camp could not participate.
For Karin Hoppo, it means waking up extraearly so that her dosing period can be completed before school every morning.
Her father, Toshi Hoppo, an esophageal surgeon, meticulously reviewed research on OIT and decided that the benefits well outweighed the risks of avoidance, which for Karin have included being rushed to the emergency room after she ate a cookie that was improperly marked nut-free after an orchestra concert at a retirement home.
When the Hoppos heard the therapy would be available in Pittsburgh, they signed up immediately, becoming the first family to be treated.
For now, Karin still sits at the peanut free table in her school cafeteria, where two of her friends also bring peanut-free lunches every day so they can join her. Karin’s mother, Satoko Hoppo, still makes sure she’s no more than 20 minutes away if Karin is at a birthday party or play date. And her parents, who are originally from Japan, still avoid Asian restaurants, where peanuts are ubiquitous.
But they’re already thinking about how, when Karin is a little older, things could be different.
“After the OIT she could go to an amusement park,” her mom said. “With her friends. Without parents.”