Sioux Falls family inspires more epilepsy training in schools through legislative action

Hayden Cota started having seizures three years ago.

The first was caused by a fever, but between September 2017 and February 2018, the electrical storm in his brain was seemingly non-stop, his parents said. 

They had to give rescue medications to their 5-year-old son seven or eight times because the seizures lasted more than five minutes. Those six months felt like forever, they said. 

Eventually, the pattern in their son's seizures changed, but that left the couple wondering what more they could do to help their boy. After all, he would be starting kindergarten this fall. 

"When he goes, I'm going to be that crazy mom that talks to the PE teacher, and the library and everyone because there are lots of dangerous places if a kiddo had an issue," said Hayden's mother Karen Cota.

Little did they know their efforts to raise awareness about epilepsy would garner the support of state lawmakers to pass a resolution this year, urging school districts and school boards to increase awareness of the disease to better protect vulnerable students.

The resolution, which was passed in February and is meant to start as soon as possible, coincides with the second Walk to End Epilepsy at 9 a.m. on Saturday, hosted by the Epilepsy Foundation of South Dakota. The first walk, which helped establish the state's chapter, drew hundreds last year. This year's event will be virtual because of concerns about the coronavirus pandemic, but it will still be a celebration because of this year's successes, the Cota family said.

But South Dakota is one if five states that doesn't have an accredited epilepsy center, meaning those with the neurological disorder often travel beyond the state's borders to find medical support from experts. 

Tom Cota, a lead volunteer with the foundation's South Dakota chapter is hoping this year's walk will help bring in enough funding to add staff to the state chapter and coordinate those awareness efforts through the foundation and school. 

More:Hundreds participate in Sioux Falls Walk to End Epilepsy

Karen, on the other hand, hopes the effort will bring about training that didn't exist in schools regularly before, she said. She has taught within the Sioux Falls School District for 10 years, and was diagnosed with epilepsy at 29.

"I have rescue medication in my backpack, and my colleagues all know where it is," Karen said. "But the look of fear in their eyes when you tell them is just crazy. They're not totally comfortable with it."

Karen encourages her colleagues to pick up a phone, if they aren't sure what to do, but the most important part – counting how many minutes have passed since the seizure started – is more difficult for others to pay attention to, she said. 

Until more people are aware of how to handle a seizure, lives are at risk and Karen is left regularly trying to debunk myths with staff at her own school, she said. 

The nurses come in each fall during teacher in-service days to talk about different health issues, Karen said. One year, they brought up epilepsy, something she hadn't heard mentioned in training before, she said. 

A fifth grade teacher brought up a question about what to do if a child swallows their tongue during a seizure, and Karen's heart broke. While the nurse acknowledged the idea was a myth, the question only spoke to how little those around her knew about the issue. 

"People used to really hurt people that were having seizures by sticking spoons in their mouths," Karen said. "Then there are so many different types of epilepsy."

In one instance, Karen spoke of a child who moved into the district and struggled with seizures. The child's seizures didn't involve their whole body shaking, for instance. Instead, the child's seizures made it seem like they were daydreaming or staring off into space, a type of seizure known as a an absence seizure, she said. 

In another, she mentioned a school secretary who showed her the cupboard in the nurses's office full of medicines for students. The nurse was one that worked there part-time, traveling in between other campuses, Karen said. 

"If (my son) was seizing, and you're on minute three, you have to go through this cupboard and look for his name," Karen said. "You could go into something called status after five minutes, which would cause all kinds of issues and potentially death for some people."

When Karen and Tom realized the gaps in training, they started calling lawmakers to find a solution, some of whom either knew a family member who was recently diagnosed with epilepsy or had known the Cota family.

Now with the help of the Epilepsy Foundation through the legislative resolution, response times can change and misconceptions can be addressed. The foundation offers free online or in-person resources available to schools and the public at large, including training programs that offer an overview of seizures and epilepsy, seizure first aid, action plans, rescue therapies and how to identify seizure emergencies in school settings, according to the resolution. 

Survey: Which potential Sioux Falls high school boundary option do you prefer?

And there wouldn't need to be any additional funding needed for the training, except for the time teachers can use to be trained every year, which is 30 to 40 minutes, Tom said. 

They're now trying to figure out how to get the resources in the hands of educators, they said. 

The story continues below. 

"You're not going to see hundreds of people driving to Pierre to testify for this," Tom said. "The moms and the dads that have kids with epilepsy, they're at home. They're dealing with the situation. Their kids may be having seizures every day."

The training should be as common as it is for every teacher who knows how to use an EpiPen for a peanut allergy, Karen said. But it starts with a conversation, she said. 

When Tom and Karen first met, Tom didn't know about the effects of epilepsy prior to meeting his wife, he said. But after witnessing Karen have a few grand mal seizures –or seizures that can cause a loss of consciousness and violent muscle spasms – before they married, it changed his entire perspective, he said. 

When Hayden started having them, the couple went into survival mode, they said. 

Photos:Sioux Falls teachers return to empty schools, classrooms for end of year cleanout

"You just educate yourself and educate yourself," Tom said. "It's such a journey."

They're also hoping the awareness effort can help bring those fighting epilepsy or those who know someone fighting epilepsy together, especially when they need someone to call and remind them they can get through those scary moments when seizures occur, they said. 

"You have an ear infection, take an antibiotic," Tom said. "Well, we can't apply that here. It's not the same."