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There are many types of epilepsy, ranging from mild to severe. Some people can go through a year without having a seizure, while others have several seizures per day. Some seizures last only a few seconds, while others last for several minutes or longer.
A seizure can happen at any time — and learning how to treat a seizure could save a life.
To help community members learn how to treat a seizure, experts encourage people with epilepsy to develop and share a seizure action plan.
“A seizure action plan is a document that contains an outline of how to respond during a seizure,” Mary Anne Meskis, executive director of the Dravet Syndrome Foundation (DSF), told Healthline. “It gives guidelines to help the lay person recognize that a seizure is happening and direct them on what steps to take to keep the individual having the seizure safe.”
DSF is a nonprofit organization that raises funds and awareness for Dravet syndrome, a type of severe epilepsy that causes frequent and often prolonged seizures.
Healthline also reached out to the mother of a child with Dravet syndrome to learn about the difference that a seizure action plan can make in the lives of people with epilepsy.
Jenny Gallo’s daughter, Lena, was only 8 1/2 months old when she had her first seizure. At age 2, she received a diagnosis of Dravet syndrome.
Gallo has since worked hard to educate members of her family and wider community about Lena’s condition and treatment needs.
“Everybody knew that she had seizures,” said Gallo, but for years the family had no written seizure action plan in place.
That changed when Lena was 11 years old. A new nurse at her school asked Gallo to provide a written plan.
“The school had never told me that they needed one,” recalled Gallo. “The doctor never told me that I should have one. I didn’t even know that it existed.”
The nurse sent Gallo a one-page form to complete, outlining Lena’s emergency response protocol for a seizure. Gallo worked with her daughter’s doctor to fill out this form and later added a second page to her daughter’s seizure action plan to help guide the day-to-day management of her child’s condition at school.
A seizure action plan can help family members, school personnel, and other caregivers learn when and how to give rescue medication, which can help stop a prolonged seizure or cluster of seizures. This reduces the risk of potentially life threatening complications.
Knowing that a seizure action plan is in place may also provide some peace of mind to caregivers.
“If you have clear written instructions, I think it’s going to help put a parent’s mind at ease,” said Gallo. “As long as people follow those instructions, you know your child’s in good hands.”
DSF encourages parents of children with epilepsy to share a copy of their seizure action plan with any caregivers that their child spends time with. This includes:
- family members
- babysitters
- school personnel
“Anytime someone is having a seizure, there’s a lot of stress — particularly if this is the first time that the individual who’s intervening has seen a seizure,” said Meskis.
“The beauty of having a seizure action plan is that it lets anyone know what to do in a seizure emergency. It outlines everything for them in a very clean and concise way to help them make the appropriate decisions to keep the patient safe,” she continued.
Even parents can benefit from having a seizure action plan in front of them when they’re treating a seizure emergency. And sharing the plan with others can help keep their child safe when they’re not there to treat the seizure themselves.
“You can’t always be there,” said Gallo, “and as your child gets older and you learn to live with this disease, you let your guard down a little bit more, you let them do a little bit more, you let them go to school for longer — so it’s really important for everybody to have that plan.”
Even emergency medical responders and other healthcare professionals can benefit from having a person’s seizure action plan when they’re treating a seizure.
“That plan should travel with the person in case of an emergency to the emergency room,” said Meskis. “We want to make sure that everything that will be needed quickly by emergency personnel is available to them to help them respond to the situation.”
Gallo has learned from experience how helpful a seizure action plan or other written notes on a child’s epileptic condition can be, even when surrounded by medical experts.
“I’ve been in the ER many times, and my daughter’s seizing, and there’s a team of medical people asking, ‘What medication is she on? What’s this? What’s that?’” said Gallo.
“And I just bust out a piece of paper with all this stuff written down. I’m able to give them all the information that they need,” she continued.
An antiseizure medication that works well for one person with epilepsy may not work well for another. In some cases, it may even make the seizure worse or cause other severe side effects.
A seizure action plan can help medical professionals decide which medication to give or avoid during a seizure, when the person’s own doctor isn’t there to guide their response.
“The neurologist that you love isn’t always going to be there in an emergency, so it’s kind of like you’re handing your doctor’s notes over and saying, ‘Here!’” said Gallo.
Whether you or your child has recently received a diagnosis of epilepsy or lived for years with the condition, putting a seizure action plan in place can help you manage it.
To raise awareness of seizure action plans and provide resources to help families develop them, DSF has collaborated with the Lennox-Gastaut Syndrome Foundation and the Tuberous Sclerosis Complex Alliance to form the Seizure Action Plan Coalition.
“We wanted almost a one-stop shop where families could go and learn about what a seizure action plan was, what it should contain, examples of the plans, and other resources and educational information that would help them develop one,” said Meskis.
The Seizure Action Plan Coalition provides several downloadable seizure action plans on its website.
Each plan includes a concise emergency response protocol, which may be tailored to a person’s specific condition and treatment needs. You or your loved one’s doctor or nurse can fill the plan out.
DSF encourages people with epilepsy or their caregivers to review their plan on regular basis and make updates when needed, including when changes are made to their prescribed treatment plan.
“We encourage families to review their plans at least annually to see if there’s any updates that need to be made,” said Meskis. “A lot of times we say pick a date, whether that’s the child’s birthday or back to school — something that will remind them to take a quick look.”
Seizure action plans are just one part of a larger strategy that people with epilepsy and their caregivers can use to educate others about their condition.
“If your child has epilepsy, make sure you have appropriate literature that you can share with those working with them, so they understand a little bit more about the disease in addition to the seizure action plan,” said Meskis.
Parents of children with epilepsy may also work with their child’s doctor and school to develop a broader management or accommodation plan to ensure their child’s needs are met.
Those needs often extend beyond the emergency treatment of seizures to include the day-to-day management of their medical condition and psychosocial support needs.
“Most parents in the Dravet community, we know that we need to be advocates,” said Gallo.
A seizure action plan can help people with epilepsy get the care they need during a seizure — promoting not only their safety but also peace of mind for them and their caregivers.
“I think having a seizure action plan really does lift a little bit of weight off,” said Gallo.
Meskis encourages parents of children with epilepsy and other community members to make seizure action plans a part of their strategy to manage the condition.
“Make sure that you really understand what the seizure action plan’s role is in your child’s medical management — and make sure you continue to spread the word so those outside of the epilepsy community understand this as well,” Meskis said.
“Perhaps they will learn from your child’s seizure plan some proactive measures they can take to keep your child or another person who’s having a seizure safe,” she added.