By Amber Kaiser
What is a seizure action plan? Have you heard of the phrase “Seizure Action Plan” or SAP? Is this concept new, or has it been around for a while? I haven’t heard of the terminology with my doctors, but I learned about it while now working in the epilepsy field. In fact, I have learned so much more working in the field and I hope that people who are either newly diagnosed with epilepsy, or have been living with it for many years, know all the resources and help that are available for them today.
After doing some research, I’ve discovered different uses for an SAP (for example, in a home, school or work setting), but all of them have the same purpose—providing people you trust with a plan for what to do when a seizure happens. Epilepsy Alliance America also has an Acute Seizure Action Plan (ASAP) that “provides detailed health and medical information” about the person with epilepsy or seizure disorder. This action plan can be useful if the person feels comfortable and chooses to share it with anyone they interact with as well as school administration including teachers, nurses and coaches.
The education it provides also helps people determine if the seizures they see are a medical emergency. CURE Epilepsy shares details about a SAP as well as a Seizure Emergency Plan (SEP). If the medication doesn’t control the seizures, CURE Epilepsy advises it “may be necessary to develop a seizure emergency plan in addition to an SAP and that SEPs are especially important for people who experience prolonged seizures (status epilepticus) and/or seizure clusters which may need to be stopped through emergency rescue medication at the hospital.” In general, a seizure action plan includes health and medical information that helps others recognize seizures and take appropriate steps to keep the person safe from injury or damage caused by prolonged seizures.
Having been diagnosed with epilepsy over 20 years ago, I often wonder why I haven’t heard of a lot of what I’m learning now working in the field. I believe the simple answer is that so many of these resources, terminology and even organizations or foundations I’m finding today are actually new. I’m not even sure if many neurologists or epileptologists talk about SAPs with their patients (I have yet to hear the term SAP when visiting my neurologist), but what I do know is that if you do some of your own research, or hear about and reach out to Epilepsy Alliance America or Epilepsy Foundation, they will provide you with more resources and education than you can imagine.
After researching its origins, not surprisingly, I found that the SAP concept was created very recently in 2020, by The Seizure Action Plan Coalition founded by the LGS Foundation, Dravet Syndrome Foundation and TSC Alliance. And, earlier this year in 2023, Epilepsy Alliance America became the managing organization of the coalition.
Like I mentioned earlier, I actually never heard of SAP until I started working with Neureka. I also never had anything written on paper about what to do when I had a seizure; none of my doctors ever mentioned the concept, and my family and I hadn’t thought about it. In fact, very early in my career, I was let go for mentioning my epilepsy in the workplace, so I was extremely careful about who I talked to and shared information with.
A few years later, I was in a really challenging and rewarding job and worked with them for many years. After my first year with them (and in a way after proving my capabilities), I felt comfortable mentioning my epilepsy and although they were now aware, I never thought of talking about what to do in the case of me having a seizure at work because my generalized seizures were controlled with medication. I did have complex partial seizures while working and sometimes they were noticed, although most times they were not.
It would always take me at least a few minutes to reorient myself and get back into the “grind” which is something I would not recommend. I wish I had felt more comfortable to take a break, or go home for the rest of the day and follow these post-seizure care tips. Also, if you feel comfortable talking with your employer, you can use a seizure action plan for work with this printable Epilepsy Foundation seizure action plan.
Carolyn—a user and friend of Neureka Sleep—says her experience with a SAP for her son, Falcon, has been different. Her son has DEE-SWAS epilepsy and is homeschooled through an independent charter school. The school has them update their SAP annually, but she isn’t sure how close schools follow SAP, or how it helps them personally since Falcon doesn’t go to the physical classroom. He learns through online Special Education (SPED) classes.
Although we are clearly in the beginning of continuing to raise awareness about epilepsy in general, it can only help to share what you’ve learned here about SAP with others and create your own SAP if you or a loved one have epilepsy. A student seizure action plan or seizure action plan for teachers can also be helpful, and if you haven’t heard of any at your school yet, I might suggest talking with the school’s administrators or connecting with the Seizure Action Plan Coalition about how to approach your child’s school and what seizure action plan form to provide.
The Seizure Action Plan Coalition says, “It is important to educate patients, healthcare providers, and the general public about the importance of SAPs.” Help raise awareness and create your own SAP with a seizure action plan example.