Education

Medication policy could keep Cedar Rapids girl with epilepsy from school

Schools without full-time nurses challenged to handle serious conditions

Tabitha Day helps her 12-year-old daughter, Emily, off the lift of her school bus Tuesday in front of their home in nort
Tabitha Day helps her 12-year-old daughter, Emily, off the lift of her school bus Tuesday in front of their home in northeast Cedar Rapids. Day has filed a lawsuit in federal court asserting that the Cedar Rapids Community School District has discriminated against her daughter with a policy that says Emily cannot come to school after using Diastat, a medication that stops seizures, and must leave school for the day if school staff have to administer the drug at school. The Epilepsy Foundation says that’s not necessary. (Jim Slosiarek/The Gazette)
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CEDAR RAPIDS — For Emily Day, a 12-year-old Truman Elementary student, school is a place where she can interact with kids of different abilities, learn physical and cognitive skills and use equipment she doesn’t have at home, such as an adaptive swing in her classroom.

“She’s in the same room with the same people she’s been with since kindergarten,” said Tabitha Day, her mother. “She’s treated well there. She likes going there.”

But new procedures in the Cedar Rapids Community School District would require students with severe epilepsy to leave school if they receive medication to stop a seizure — despite contrary advice from the Epilepsy Foundation.

Because Emily often has seizures when she wakes up in the morning, she would have to stay home those days under the district rules.

“What I think is they just don’t want her there for a liability factor,” Tabitha Day said.

Day filed a federal lawsuit in December against the district, Grant Wood Area Education Agency, Sandra Byard, the district’s health services facilitator, and Cindy Fagan, a school nurse, alleging the district denied Emily’s rights to a free public education.

Day is representing herself in the suit in which she is seeking financial compensation and for the district to stop using the protocol. The defendants have not yet responded in court.

Rare disease

Emily, who is non-verbal, looks like many girls her age with bright pink sneakers, jeans and a ponytail of curly brown hair. She’s excited when she gets off the school bus, blowing raspberries and using pointed glances toward the kitchen to communicate that she wants a snack.

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Emily has an extreme form of Lennox-Gastaut Syndrome, a rare type of childhood onset epilepsy that can involve frequent seizures, sometimes lasting five to 10 minutes, according to the National Institutes of Health.

The family tried diet changes, two surgeries and many different medications. One drug Emily takes is Diastat, a form of anti-anxiety medicine Diazepam, which calms abnormal overactivity in the brain and stops the seizure. The drug is delivered as a rectal gel because many patients with intense seizures can’t take oral medicine.

“The purpose of the medicine is to stop the seizure from going into status epilepticus,” Tabitha Day said, referring to a dangerous condition in which a seizure lasts too long.

New protocol

Truman staff had been administering Diastat to Emily until the 2018-2019 school year, when the district transferred her to Hiawatha Elementary.

There, the Days were told Emily would have to stay home after getting Diastat or leave school if the drug was given at school, Day said. The family followed the protocol at first, but kept asking school officials to let them see the policy outlining the directives.

It was nearly a year later, in September 2019, Day first saw written procedures that seemed to home in on Emily.

“Medical research validates that a small percentage of children treated with certain emergency medication, such as rectal Diastat and some forms of Midozolam and Lorazepam, suffered respiratory depression after administration,” states an undated letter addressed to “Dear Parent/Guardian.”

“Therefore, in order to keep students safe ... when a student experiences status epilepticus ... 911 will be called and the parent/guardian immediately thereafter.” The letter says students will be taken by ambulance to the hospital unless the parent arrives at the school and declines the transport.

“If emergency medication has been given, the student will be sent home for the remainder of the day,” the letter states. “If the student is given rectal Diastat ... at home before school, the student should not be sent to school, but should stay home so the student can be closely monitored for respiratory depression.”

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Byard confirmed this week the district created the procedures for families of children with a seizure disorder diagnosis, but it’s not a “specific board policy.”

Other district policies

A review of the online medication rules of other metro Iowa school districts, including Iowa City, Davenport and Waterloo, did not show policies addressing seizure medication.

The Des Moines Public Schools doesn’t have a written policy, Health Director Diane Gladson said.

“However, generally speaking, Diastat and Epinephrine are considered emergency medications. When a student is given an emergency medication at school we contact the parent and call 911. The concern is that the condition you are treating — for example, status epilepticus with Diastat or an anaphylactic reaction with Epinephrine — may reoccur when the medication wanes. Thus, we want the student to be in a health care setting where the proper follow-up care can be delivered.”

But Diastat and epinephrine (popularly known under the brand name of EpiPen) are not the same. Diastat is intended to prevent a dangerous condition and epinephrine stops a severe allergic reaction already underway.

The Epilepsy Foundation, a national nonprofit based in Maryland, does not support sending a child home after she gets Diastat in school.

“It is our position that a student who receives RD at school does not, as a matter of policy, need to be sent home or to the hospital,” the group wrote in a March 19 letter to the Cedar Rapids district.

Respiratory depression is unlikely and not necessarily linked to Diastat, the Foundation stated. Post-medication monitoring “does not have to be done by a medical professional and can be done in the classroom once the seizure has stopped.”

District challenges

Laurie Combe, president of the National Association of School Nurses, developed a protocol for administering Diastat while she was health services coordinator for the Houston Independent School District in Texas.

“When it (Diastat) first became available, we wanted it to come in an ambulance for a child because we were concerned about respiratory depression,” Combe said Thursday.

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But as they learned more, Houston school nurses discovered respiratory depression was unlikely after Diastat. They started keeping most students in the classroom, she said.

But Combe also realizes the challenges districts face managing serious medical conditions. Many Iowa school nurses are assigned more than one school, which means they have to delegate some tasks to non-licensed staff who get special training — allowed by Iowa law.

“As a nurse, we are accountable for the safety of our client in any act that we delegate,” Combe said.

Day decided this year to return Emily to Truman, where Day is not following the district’s procedures to keep Emily home when Diastat is administered. Day refuses hospital transports and asks for Emily to remain in school unless the girl’s reaction to the medicine is unusual.

“She’s able to get a lot more opportunities to learn at school,” she said

Comments: (319) 339-3157; erin.jordan@thegazette.com

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