A Simple Plan Can Save a Life

Seizures aren’t as uncommon as one might think. In fact, one in 26 people in the United States will develop epilepsy at some point in their lifetime, according to the Epilepsy Foundation. Apply that statistic to a typical school classroom, church, workplace or family gathering, and it’s likely that at least one individual you know or love may have seizures.

Because a seizure can occur any time, anywhere, without any warning at all, it’s important for those with epilepsy to have an action plan for emergency seizure response, and for those close to them to be familiar with that plan. Seizure Action Plan Awareness Week, which kicks off Monday, Feb. 8, in conjunction with International Epilepsy Day, aims to demystify seizure disorders and arm those who live, work and spend time with someone with epilepsy with the information they need to help during a seizure emergency.

“Having a seizure action plan helps those close to you know how to best protect you from injury during a seizure, gives direction on the most appropriate medical response or rescue therapy and provides important information to first responders about your seizure type and medical condition,” said M. Scott Perry, M.D., epileptologist and medical director of neurology and the Genetic Epilepsy Clinic at Cook Children’s Medical Center. “These situations are often high-stress, so being prepared with a clear and precise plan will help you and those who love you confidently and successfully manage your epilepsy.”

Make A Plan

Some seizures, especially those that are prolonged or occur in clusters, can be life-threatening. Having a plan that dictates accurate intervention reduces response times, and decreases the risk of death and the need for additional rescue medications, according to the Seizure Action Plan Coalition.

A good plan includes tailored guidelines specific to the individual’s seizure type, medical circumstances and needs. It clearly and concisely organizes all of this vital information into a document that can be put into the hands of loved ones, friends, co-workers and caregivers so they are prepared to respond in the event of a seizure.

Components of a seizure action plan should include:

• Information about your seizure type.
• How one should respond to your seizures to help protect you from injury and get you the appropriate medical assistance.
• When to use rescue therapy medications, their names and dosing information.
• The type of help you need following a seizure and special instructions for first responders.
• A list of seizure triggers and other important information about your condition.
• Emergency contacts.

Parents of children with epilepsy should have a plan for their child. Anywhere the child frequents—be it school, church, sports activities or camp—should have a copy and teachers, school nurses, coaches and counselors should be familiar with your child’s plan. Experts say it’s important to include children in the planning process to help them feel more confident and secure that they’ll get the help they need when a seizure occurs.

“Seizure action plans are so useful for our families,” said Aubrey Esparza, neurosciences clinical nurse leader at Cook Children’s Medical Center. “They give them a guide on the best plan of action during those emergency situations when you really need a step-by-step approach to provide the safest care so that the patient has the best possible outcome.”

Enhancing Action Plan Efficiency

Esparza is spearheading an effort at Cook Children’s to improve the process of developing, accessing and updating seizure action plans for patients. Currently, paper plans are scanned into a patient’s electronic medical record making them difficult for clinicians to electronically search, track, edit and update. In some cases, there may be multiple copies—some outdated—in different places within a single chart. Working together with Esparza, a multidisciplinary team of nurses, physicians and IT professionals are developing a digital tool for building a seizure action plan directly within a patient’s electronic medical record.

The digital enhancement would mean patients’ action plans would be located in a dedicated space within the medical record and allow clinicians to easily search and update electronically. The tool will alert health care providers when it’s time for a patient’s annual action plan update, ensuring that patient caregivers have the most up-to-date rescue instructions at their fingertips. The plan can be printed for use at home, school or other places the patient frequents. The electronic seizure action plan tool will launch in 2021.

“The thing parents report most frequently about seizure action plans is that they have increased confidence in being able to manage their child’s seizures at home because they have clear-cut instructions on what to do when that seizure occurs,” Esparza said. “It helps them know when to be concerned, when to give medication and when to call 911.”

Information about Seizure Action Plan Awareness Week and the Seizure Action Plan Coalition, along with tips and tools for creating a personalized plan, can be found at seizureactionplans.org. The Epilepsy Foundation also provides helpful resources about aiding someone having a seizure at First Aid for Seizures Procedure.

Log on to cookchildrens.org to learn more about Cook Children’s Comprehensive Epilepsy Program, recognized by the National Association of Epilepsy Centers as a level 4 epilepsy center providing the highest level of care for patients with complex epilepsy.