By EMERSON WIGAND
Capital News Service
LANSING — Advocates for children with epilepsy are pushing to train Michigan school employees to recognize seizures and provide necessary first aid.
The legislation would mandate education for all of the state’s school districts to help the 13,600 Michigan children with epilepsy and their families.
Elizabeth Stout, an Albion College student and youth consultant with Children’s Special Health Care Services of Michigan, said thebill is a great step.
“Every patient is different when it comes to their epilepsy and how you treat it,” said Stout, who has had epilepsy for the past 12 years. ”It’s hard when people assume things about a health condition, and it would be a lot easier if there was more education”
The legislation, sponsored by Rep. Jack O’Malley, R-Lake Ann, would make seizure action plans for students with epilepsy accessible for employees in contact with them. Using information from parents, the plans are specific to each student’s needs, including information on medication or first aid.
The legislation would also mean each school would need have a full-time employee trained to administer emergency rescue medication in potentially life-threatening situations. Eleven other states have already passed seizure safe schools legislation.
“Most individuals we meet with, certainly on the legislative side, are surprised to know this training isn’t already in the repertoire for teachers,” said Brianna Romines, the president of the Epilepsy Foundation of Michigan.
The bill would require that all school employees be educated in seizure first aid and recognition. This one-hour training would be provided online for free, with in-person options as well.
The training is also offered by the National Epilepsy Foundation, which allows broader access than the state’s chapter can provide, said Russ Derry, the Michigan Epilepsy Foundation’s director of education.
Romines said epilepsy training is as important as other safety training teachers receive. One school counselor, who was trained yearly in the use of fire extinguishers, said she has never had to use one in over 15 years But the counselor has responded to between about five and 15 seizure emergencies each year.
The lack of education is a problem because it stigmatizes epilepsy, said Sierra Cameron, the CEO of the Michigan chapter of the American Academy of Pediatrics.
“If a child goes into a seizure, it might not be as clinically bad as folks think it is,” Cameron said. “If you don’t have any familiarity with seizures, it might really daunt you.”
One of the consequences is that school employees call 911 and have children diagnosed with epilepsy taken from class to the emergency room, Romines said. This leads to trauma for the children and needless costs for families from hospitals, ambulance rides and lost wages for those who leave work.
“So, there are economic and emotional impacts to this,” Romines said. “But all of that could’ve been simply addressed with training.”
Another challenge is that school employees may be uncomfortable administering invasive rescue medication, Derry said. While nasal medication options are increasingly available, the primary rescue treatment for youth suffering seizures is administered rectally.
Derry empathizes with these employees, but he said rescue medication training is just as important as learning to use epipens for students with serious allergies. While a school nurse would ideally be administering the medication, all employees allowed to administer medication would receive training.
Derry said everyone should understand the needs of students with epilepsy as seizures can happen any time.
“In Michigan, we have one of the worst ratios of school nurses to students in the country,” Derry said. “We have about 4,200 students per school nurse.”
Stout said it’s also important to remember epilepsy is not just seizures with uncontrollable movements. Epilepsy can prompt staring spells that lead to students being disciplined for not paying attention, or to an assumption that they have attention deficit disorder, Romines said. Many effects of epilepsy and its medications are difficult to distinguish.
“That’s why we’re hopeful for this training,” Romines said. “Not only does it teach you seizure first aid, it teaches seizure recognition.”
The foundation says it hopes the House will hold hearings on the proposed Seizure Safety Act in October.
Stout said repeatedly explaining your condition is exhausting. While she was lucky to have teachers that were open to that conversation, that’s not always the case.
“If teachers and others within the education system understand epilepsy, then it’s easier for students to be honest about it, and share it,” Stout said.For youth diagnosed with epilepsy, and their families, in need of more support she recommends the Epilepsy Foundation of Michigan’s Call and Connect Network.