Erinn Greetis keeps extra EpiPens around for her six-year-old son Jax Greetis-Choi in their home on Monday, Aug. 6, 2018 in Algonquin, Ill. Jax has many food and other allergies and his mother believes that schools should have extra EpiPens available. (John Konstantaras/Chicago Tribune/TNS)

A bee sting sent a nurse into action at Forest View Elementary in Mount Prospect, Ill., injecting a shot of epinephrine into a 7-year-old having an allergic reaction.

At Hawthorne Elementary in Elmhurst, Ill., a 10-year-old was given the medication after eating a peanut butter and jelly sandwich and a carrot.

For a 7-year-old at Mary E. Courtenay Language Arts Center in Chicago, it was an allergic reaction to cantaloupe that prompted the injection.

In each of these incidents during the 2016-2017 school year, the child had no previously known severe allergies. And in each case, the child was rescued with a shot of epinephrine, used to counter severe allergic reactions and kept on hand by his or her school.

An estimated 4 to 6 percent of children have food allergies, and parents of children with known allergies often keep the lifesaving medication within reach—in backpacks and in school nurses’ offices. But that doesn’t help children who experience allergic reactions for the first time at school, or children who know of their allergies but don’t have their own EpiPens or similar devices, which can be pricey.

Yet, in Illinois, not all public or private schools maintain a general supply of the medication for any student to use, even though at least two sellers of epinephrine auto-injectors give them to schools for free.

It’s also uncertain which Illinois schools have them and which don’t. Fewer than one-third of Illinois’ 852 school districts reported having a supply of epinephrine auto-injectors during the 2016-2017 school year, the most recent year for which data is available. More districts than that keep the devices on hand, but they didn’t tell the state, despite a requirement beginning in that school year that they report that information, the Tribune found. Some school officials said they weren’t aware they were supposed to report the information.

Schools that did keep auto-injectors administered epinephrine from their own supplies 122 times during the 2016-2017 school year—and more than half of those times involved students or staff with no known severe allergies.

“There are a whole mess of kids going to school that don’t even know they have a food allergy, or maybe an allergy to a bee sting,” said Jen Jobrack, senior national director of advocacy for the group Food Allergy Research & Education.

If those kids have allergic reactions at school for the first time, “You may not have time to wait for an ambulance to arrive,” she said.

Illinois was among the first handful of states in the country to pass laws allowing or requiring schools to have extra epinephrine, Jobrack said. Almost every state in the country has since followed. About a dozen states now require schools to keep their own supplies of epinephrine, according to the group.

Illinois’ action followed the death of 13-year-old Katelyn Carlson in 2010.

The seventh-grader from Chicago’s Sauganash neighborhood died after reacting to peanuts in Chinese food at a school party. In 2011, Gov. Pat Quinn signed a bill into law allowing school nurses to give the drug to any student believed to be having a life-threatening allergic reaction, and allowing schools to keep extra epinephrine in stock. The law was later amended to allow any trained person at a school, not just school nurses, to administer the medication.

Sen. Chris Nybo, R-Elmhurst, was a force behind that law and subsequent changes that have expanded the availability of epinephrine. Nybo’s wife encouraged him to take up the cause after Carlson’s death. The Nybos’ 14-year-old son is allergic to tree nuts, an allergy his parents discovered when the skin around his eyes swelled after he ate a cashew 10 years ago.

“Schools are one of the most likely places where kids are going to discover they have allergies,” Nybo said. “It made sense that if we had the opportunity to have EpiPens available, and the possibility of EpiPens being administered by trained personnel, that was something that could really save lives.”

The EpiPen, sold by Mylan, delivers a blast of epinephrine when inserted into a person’s outer thigh that can halt allergic reactions such as breathing trouble, a drop in blood pressure and swelling and hives around the face and lips. Severe allergic reactions can happen within minutes or even seconds of exposure to an allergen and can be life-threatening if not treated quickly.

The state’s largest school district, Chicago Public Schools, keeps at least two extra EpiPens at each school, said Dr. Kenneth Fox, the district’s chief health officer.

“Maybe the first time a child gets exposed to a food he or she is severely allergic to, maybe that happens at school,” Fox said. “In situations like that, we want to have EpiPens available. They’re really important and you have to act quickly.”

Chicago Public Schools administered epinephrine from its own supplies about 40 times last school year, Fox said.

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Parent Erinn Greetis said it’s important for schools to understand how serious allergies can be. Her 6-year-old son, Jax, has had severe food allergies since he was six months old. When he was barely a year old, he found a speck of scrambled egg on the floor and ate it. He started grunting and touching his neck, prompting his parents to give him an injection of epinephrine and rush him to the hospital.

“It just can spiral so quickly,” Greetis said.

Jax keeps an EpiPen with him at school and has several more in the classroom and nurse’s office. His school, Mackeben Elementary in Algonquin, also has its own supply of EpiPens on hand.

“There are a lot of children and parents that maybe don’t quite grasp how unpredictable allergies can be,” Greetis said. “Especially in the younger years, sometimes they pop up. No one is aware. No one is prepared, and it’s scary. I think having (the medication) on hand is lifesaving.”

Schools that don’t carry the medication attribute their decision to relying on emergency personnel as well as complexities involved in securing it.

Rosemont Elementary School District 78, which has more than 200 students, doesn’t keep epinephrine on hand but school officials are “very aware” of the kids who have allergies and those kids have their own EpiPens, said Superintendent Kevin Anderson. He also said local police have the devices and can respond to the school, in an emergency, within a couple of minutes.

Some schools say it can be challenging to find a doctor to write a prescription for a school. Mylan, the company that sells EpiPens, requires schools to get prescriptions to receive up to four of the devices for free each year. EpiPens often expire after a year. Kaleo, which sells Auvi-Q, a similar device that has audio to guide users, requires only the name of a physician, not an actual prescription, in order for schools to get its devices for free each year.

Illinois law says that doctors who write prescriptions for epinephrine for schools can’t be held liable or disciplined for problems that arise, except in cases of “willful and wanton conduct.” Still, some doctors have been reluctant to write prescriptions for an entire school, rather than a specific individual, said lawmaker Nybo.

It took two years for the Prairie-Hills Elementary School District 144, headquartered in Markham, to find a doctor to write the school district a prescription, said Carrie Ablin, district director of student services. This will be the 2,900-student district’s second school year with the devices, she said. It has not had to use them.

Rhodes School District 84.5 in River Grove is in the process of getting the devices now, but it took some time for the school nurse to secure a prescription. “She didn’t snap her fingers and find a doctor,” said Jim Prather, superintendent of the more than 600-student district. “We’re close to a hospital, but it’s a matter of minutes to get an ambulance here, and that could be less time than we have in a situation where an EpiPen is needed.”

Calumet City’s Lincoln Elementary School District 156, which has about 1,000 students, plans to continue working on getting a prescription this year after having some difficulty finding a doctor to write one, said Superintendent Darryl Taylor.

Schools that want their own supplies potentially face another challenge this year: a shortage of EpiPens across the country. Mylan has told schools that “there may be delays in order fulfillment until supply levels stabilize,” Mylan spokeswoman Lauren Kashtan said in an email.

It’s an obstacle facing many parents as well—on top of the hefty prices they’ve already been paying for the devices over the last couple of years. A set of two EpiPens can have a wholesale price of as much as $600, according to Elsevier’s Gold Standard Drug Database, though consumers typically pay less than that depending on their insurance plans. It’s possible the Food and Drug Administration’s recent approval of a generic EpiPen might drive down prices, but it’s too soon to tell by how much.

That cost, along with the expenses involved in seeing doctors for diagnoses of allergies, may be obstacles for some families in securing their own devices and part of the reason schools should keep their own supplies, said parent Amy O’Keefe.

O’Keefe’s 13-year-old daughter, who has a number of food allergies, brings her own devices to school. She keeps one set with her and one set in the nurse’s office at Wilmette Junior High.

But O’Keefe knows that might not be something all families can do.

“I feel like when a district decides epinephrine can only be dispensed to a diagnosed student, they’re potentially putting the students with the least resources at the greatest risk,” O’Keefe said.

O’Keefe said her family has spent years teaching her daughter how to use the device and instilling in her the importance of keeping it nearby. “I would hope there’s no way she’d ever need the (school’s) stock set,” she said. But, she noted, “I’m not blind to the possibility that she might one day take a risk or forget her own epinephrine.”

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