In 2015, an estimated 3.4 million people in the United States had epilepsy, a brain disease that causes seizures. These include 470,000 children with epilepsy and 3 million adults.
There are many types of epilepsy, ranging from mild to severe. Some people can go through a year without seizures, while others have multiple seizures a day. Some seizures last only a few seconds, others several minutes or longer.
A seizure can happen at any time – and learning how to manage a seizure can save lives.
To help community members manage a seizure, experts encourage people with epilepsy to develop and share a seizure action plan.
“A seizure action plan is a document that provides an outline of how to respond during a seizure,” Mary Anne Meskis, executive director of the Dravet Syndrome Foundation (DSF), told Healthline. “There are guidelines to help the layperson recognize that a seizure is occurring and what steps to take to protect the person who is having the seizure.”
DSF is a non-profit that raises funds and raises awareness of Dravet syndrome, a type of severe epilepsy that causes frequent and often persistent seizures.
Healthline also reached out to the mother of a child with Dravet Syndrome to learn the difference 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. When she was 2 years old, she was diagnosed with Dravet Syndrome.
Gallo has since worked hard to educate members of her family and the wider community about Lena’s condition and treatment needs.
“Everyone knew she was having seizures,” Gallo said, but the family did not have a written seizure action plan for years.
That changed when Lena was 11 years old. A new nurse at her school asked Gallo for a written plan.
“The school never told me they needed one,” recalls Gallo. “The doctor never told me I should have one. I didn’t even know there was such a thing. “
The nurse sent Gallo a one-page form to fill out that outlined Lena’s emergency 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 facilitate day-to-day management of her child’s condition at school.
A seizure action plan can help family members, school staff, and other caregivers learn when and how to give emergency medication that can help stop a prolonged seizure or seizure buildup. This reduces the risk of potentially life-threatening complications.
Knowing that a seizure action plan is in place can also give caregivers some peace of mind.
“Having clear written instructions will help parents calm down,” said Gallo. “As long as people follow these instructions, you know your child is in good hands.”
DSF encourages parents of children with epilepsy to distribute a copy of their Seizure Action Plan to all caregivers their child spends time with. This contains:
- family members
- School staff
“Every time someone has a seizure there is a lot of stress – especially if this is the first time the person intervening has a seizure,” Meskis said.
“The beauty of a seizure action plan is that everyone knows what to do in a seizure emergency. It describes everything very neatly and succinctly for them to help them make the right decisions to keep the patient safe, ”she continued.
Even parents can benefit from having a seizure action plan in front of them when handling a seizure emergency. And sharing the plan with others can help keep your child safe when they are not there to manage the seizure themselves.
“You can’t always be there,” said Gallo, “and when your child gets older and you learn to live with this disease, you let go of your vigilance a little more, you let it do it a little more, you let them go longer to school – so it is really important that everyone has this plan. “
Even emergency responders and other health professionals can benefit from having a person’s seizure action plan when dealing with a seizure.
“This plan should travel with the person to the emergency room in an emergency,” Meskis said. “We want to make sure that the emergency services have everything they need quickly to be able to react to the situation.”
Gallo has learned from experience the usefulness of having a seizure action plan or other written notes about a child’s epileptic illness, even when surrounded by medical experts.
“I’ve been to the emergency room many times and my daughter is packing and a team of doctors asks, ‘What medication is she taking? What’s this? What is that? ‘”Said Gallo.
“And I just got out a piece of paper with all the stuff written on it. I can give you all the information you need, ”she continued.
An anti-epileptic drug that works well in one person with epilepsy may not work well in another. In some cases, it can even make the seizure worse or cause other serious side effects.
A seizure action plan can help healthcare professionals decide which medications to give or avoid during a seizure when the person’s own doctor is not there to guide their response.
“The neurologist you love won’t always be there in an emergency, so it’s like dropping your doctor’s letters and saying, ‘Here!'” Gallo said.
Whether you or your child were recently diagnosed with epilepsy or have lived with the condition for years, devising a seizure action plan can help you manage it.
To raise awareness of seizure action plans and provide resources to help families develop them, DSF has partnered with the Lennox Gastaut Syndrome Foundation and the Tuberous Sclerosis Complex Alliance to create the Coalition for the Seizure Action Plan form.
“We almost wanted a one-stop shop where families can learn what a seizure action plan is, what it should contain, examples of the plans, and other resources and educational information to help them develop one,” Meskis said.
The Coalition of Seizure Action Plan has several seizure action plans available for download on its website.
Each plan includes a concise emergency protocol that can be tailored to a person’s specific condition and treatment needs. You or your loved one’s doctor or caregiver can fill out the plan.
DSF encourages people with epilepsy or their caregivers to periodically review their plan and update it as necessary, even if changes are made to their prescribed treatment plan.
“We encourage families to review their plans at least annually to see if any updates are needed,” Meskis said. “We often say pick a date, be it the child’s birthday or back to school – something to remind them to take a quick look at.”
Seizure action plans are just 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 to share with your staff so that they understand a little more about the disease in addition to the seizure action plan,” said Meskis.
Parents of children with epilepsy can also work with their child’s doctor and school to develop a broader management or placement plan to ensure their child’s needs are met.
These needs often go beyond emergency treatment for seizures and include daily management of their condition and need for psychosocial support.
“Most parents in the Dravet community know we have to be advocates,” said Gallo.
A seizure action plan can help people with epilepsy get the care they need during a seizure – not only promoting their safety, but also peace of mind for them and their caregivers.
“I think a seizure action plan is really taking off a bit,” said Gallo.
Meskis encourages parents of children with epilepsy and other community members to make seizure plans part of their strategy for treating the condition.
“Make sure you really understand the role of the seizure action plan in your child’s medical care – and make sure you spread the word so that it is understood outside of the epilepsy community,” Meskis said .
“Perhaps from your child’s seizure schedule they are learning some proactive steps they can take to protect your child or someone else who is having a seizure,” she added.