Raleigh Mom Pushes 'Sam's Law' to Make Seizure Education Mandatory in NC Schools

A mom is fighting for parents' rights to have "seizure plans" in North Carolina schools


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Image courtesy of Hafakot/Shutterstock.com

May 4, 2016, was the day that changed our lives forever. Zachary was 11 and on his way to the Outer Banks for an overnight field trip to mark the end of fifth grade and the move to middle school. At about 10:30 a.m., I got a call at work that he had had a tonic-clonic seizure.

“A seizure, what is that?” I asked the chaperone and the paramedics that were on scene. Zachary was able to talk to me and seemed okay but we decided to have him seen at the hospital.

My husband and I rushed from work and made the three-hour journey. When we got there he was talking and seemed fine. At this point, the doctor told us that it is not uncommon for a person to have a seizure and that it isn’t really a seizure disorder, or epilepsy, until a person has more than one seizure. We took this information and planned to set up an appointment with a neurologist just to check on Zach. We made our journey home and Zach was so disappointed that he was going to miss the field trip. As we all would learn, this was just the beginning.

The next few months introduced us into the world of epilepsy. There were neurologist appointments, medications, research, EEG’s, blood tests. We tried to learn as much as we could as quickly as we could. All the while, Zach kept having seizures. Some were shorter, some were longer, some were at night, some were during the day. We continued to try to work on the combination of the medications and talk to as many people as we could about his case.

As the months went on, the seizures changed. They then became drop seizures where he would just fall. He had so many bruises, cuts and scrapes that he looked like he had been beat up regularly. We had to make him start wearing a helmet to make sure he didn’t sustain a head injury but the emotional toll at a time where appearance is important was difficult. He was so strong but it was tough on him.

And, he was having trouble in school because his seizures were happening so often. He would miss days of school at a time or if he was there would be in such a fog because of the medications. And, we couldn’t let him do any activities or fun things because we were so afraid he would have a seizure.

He had many seizures in school which interrupted learning for everyone. However, we were fortunate that his school is small, the staff was trained and his classmates looked out for him. When he would have a seizure, one of the boys would get a staff member, some would stay with him until the staff member came in and the others would file out quickly. It happened so often at this point, everyone was used to it.

We have had to face the many challenges associated with this condition that included a near drowning when Zach had a seizure in a pond, but we're happy to report that Zach has been seizure-free since October 2018. We are constantly worried they will come back but we are thankful to be able to engage in life again. We are in a place now where we can reflect on all that has happened, be thankful for where we are and use our story to help others so maybe they won’t have the struggles that we have had.

We feel passionate that every school should be prepared like ours to assist a child with seizures. Epilepsy is such a terrible disease and ensuring the safety and comfort for these kids is essential. Not every school has the resources to make sure all students who have had or could have a seizure are safe at school. That's where Sam's Law comes in. Sam's Law was first introduced in eastern Texas. It's named after Samantha Watkins, who died in 2016 after experiencing an epileptic seizure. With Sam's Law, every parent who has a student with epilepsy would be able to petition to have a "seizure action plan" in place. Schools would have critical information on-hand like a student's seizure medication information, dosage and method of administering. If signed into law in North Carolina, it would go into effect the 2021 school year.

In July of this year, Sam's Law passed the House (HB955) and was sent to the Senate for concurrence (SB354). The concurrence failed so it has been sent to a committee. We have been asked to keep pushing our legislators to come to an agreement. This law will help the 15,500 children in North Carolina that have epilepsy go to school safely. It will require schools to train about seizures, have first aid for seizures and have a seizure action plan.  My son is lucky that his school has all of this available but we know others that do not.

 

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