Every evening, 10-year-old Danny Hyman dutifully sits down to eat a tiny portion of a food that could send him to the emergency room.
Danny is severely allergic to peanuts, but every morning he consumes 36 milligrams of peanut protein mixed with applesauce in hopes of conquering his allergy.
The Irvington, NY, fourth-grader is one of 60 severely allergic children taking part in a controversial new treatment known as oral immunotherapy (OIT) run by allergist Dr. Jonathan Bell, of Danbury, Conn.
“I’d gotten word that OIT was available relatively locally, and we had to try it,” says Danny’s mom, Suzie Fromer, who started her son on Bell’s regimen in February.
Bell’s patients begin by consuming a 0.1 milligram dose of powdered peanut protein while in his clinic. The dosage is increased at 30-minute intervals over a 4½-hour period to about 6 milligrams. If that amount is tolerated without symptoms, the children take home the same dose and eat it daily with applesauce, juice or yogurt over the following two weeks. If there continues to be no reaction, they return to the clinic 14 days later, and the dose is again incrementally increased depending on the patient’s progress. The goal is to be able to tolerate eating 10 peanuts in a single day. It can take up to one year to reach that point, and patients must then consume peanuts regularly for maintenance.
Bell says he has a 93 percent success rate among his patients. Most children get to the stage where they can safely eat products made in a facility with nuts, while a few are able to enjoy full PB&J sandwiches.
“We had a little boy who used to crave cotton candy because his family ate it on the Jersey Shore,” says Bell. “It was prepared with peanut oil, so it was dangerous for him.
“You should have seen his face when he was finally allowed to eat the cotton candy like his brothers and sisters. He was ecstatic!”
The treatment, which has been operating on the fringes of medicine for years, is now performed at around 50 private practices throughout the US, including Bell’s clinic. It comes at a time when one in 13 children suffer from food allergies, a rate that has jumped by 50 percent in recent decades. Bell’s patients are all children, though he says the treatment also works for adults.
Still, he cautions that patients aren’t “cured” but reach a point where they can safely have some exposure to peanuts. “They are still allergic but have remained tolerant,” he says.
But such tolerance allows parents like Fromer some peace of mind. It’s something she rarely has. Danny has serious reactions to many other foods, including eggs, tree nuts, seeds and wheat. “I shower with my cellphone right next to me,” admits the 43-year-old. “We are living in a world surrounded by food that constantly threatens us. The stress can be unbearable.”
Years ago, Danny’s wheat allergy led to a frightening emergency room visit when he suffered anaphylactic shock after accidentally eating a bread roll that was not gluten-free. While the boy hasn’t had such an encounter involving peanuts, Fromer estimates that he could have a similarly severe reaction if he were to consume them, which he never has. She discovered his allergy when she was nursing and he got a severe rash after she’d consumed peanuts. These days, if he uses his grandmother’s iPad after she’s been snacking on Skippy and crackers, his eyes can swell shut from the secondary contact.
A few years ago, Fromer moved Danny to a new school because the public elementary school he was at in Tarrytown, NY, didn’t have a nut-aware policy.
“I did not want to leave him there and have something happen to him,” says Fromer. The family moved last year to accommodate Danny’s school change. Within the Irvington district, kids wishing to eat peanut butter and the like must sit at a separate “nut table.”
Still, Fromer has gotten pushback from parents who don’t understand that what they put in their kids’ lunches can be a big danger to her son. “It turns you into something of a social outcast.”
Bell, who also offers OIT for some tree nuts such as pecans and cashews, agrees that treating social isolation is one of the key benefits.
“It allows people to go to birthday parties and social events with much less fear and anxiety,” he says.
But not everyone believes that OIT, which is typically covered by insurance, is a miracle treatment. It is neither approved by the US Food and Drug Administration nor endorsed by any professional organization of allergists. A similar treatment of giving shots of peanut protein to build up immunity was abandoned decades ago after a child tragically died.
In February, the Food Allergy Research and Education organization endorsed OIT when it’s carried out in clinical trials, but not in private practice. Some of the top doctors in the field say more studies are needed.
“This is still a research protocol, and should not be done [in private practice] until standardized protocols and foods are available to appropriately treat patients,” says Dr. Thomas B. Casale, professor of medicine at the University of South Florida.
Fromer, at least, is convinced she is doing the right thing for Danny and feels Bell’s program is safe.
She hopes similar OIT treatments might eventually become available to treat Danny’s reaction to wheat and other foods.
Concludes the mother of two: “Dr. Bell has given us so much hope.”
Read the whole article and see photos: http://nypost.com/2016/06/01/can-this-controversial-treatment-mean-the-end-of-peanut-allergies/
