Patient Stories

Everyone has a story and there is a power in sharing them. Thank you to our families for sharing the patient voice and their experience on the importance of establishing an individualized SAP for seizure emergencies.

If you would like to share your story, please email us:

Emily & Teddy’s Story:
New Canaan, CT USA

We have planned for it.

If you were grabbing a coffee from our local Dunkin Donuts, or taking a walk through one of our town parks…you have surely met our Teddy. He is the tall, sweet, spirited boy who is greeted by everyone around him, and will gladly take your hand and force you to run with him. He is the boy who wears a helmet, is nonverbal and may have a sudden violent fall (drop seizure) right in front of you. It is scary, and unexpected. But is this considered an emergency? Could be, or not. It all depends on the context, timing, seizure type, duration, antecedent, respiratory status, postictal presentation…factors that need to be considered before determining the appropriate action.

For some individuals with epilepsy, one breakthrough seizure may be considered an emergency and requires emergency action.  For Teddy, a boy with Lennox Gastaut Syndrome, multiple daily seizures are common, but seizures that require emergency action are infrequent. Knowing when to act is the essential aspect of his seizure care plan.

When Teddy was first diagnosed with LGS, our singular focus was to stop his seizures, a lofty target for a child with LGS. Our aim has since evolved beyond seizure freedom, to having sufficient seizure control to allow Teddy the most fulfilled life possible, while minimizing seizure emergencies and forced hospitalizations.  As Teddy’s life became more full with different caring professionals responsible in keeping him safe, we needed a consistent approach to addressing his daily seizures, and knowing when emergency interventions are indicated especially in high stress situations. This led us to develop a seizure action plan, a clear set of actions to refer to during crisis situations.

When we first developed Teddy’s first seizure plan, it was at minimum a helpful exercise in putting down on paper many of the actions and decision making we have put in place after years of seizure management. It helped to reinforce our current practice and evaluate how we can continue to improve. Since its development, we found that Teddy’s plan is actually a more fluid document that requires constant review and revision to best support Teddy’s needs at the present moment. In addition, it is a document that we could share with his caregivers, teachers, local EMT to ensure consistency and decrease unnecessary hospitalizations.

When determining what goes in a plan, I imagine what someone would need to know who has no background knowledge of Teddy. His plan includes: current date (rev.), essential information and emergency contacts, descriptive background, list of current medications (including rescue), description of seizures types and then seizure management. Seizure management addresses different seizure scenarios from brief isolated absence seizures which do not require emergency intervention, to seizure clusters lasting greater than 5 min and requiring the administration of emergency medication.  It also includes basic first aid for injuries related to seizures. The plan is short and accessible and most importantly provides a predetermined set of actions to be taken in a crisis situation that is in the moment can be very stressful and upsetting.

At present, Teddy’s is experiencing a pretty stable seizure phase. And we are fully enjoying it. But we know like all of his phases, it may change. And we are ready…we have planned for it.

Alison & Preston’s Story:
Virginia, USA

“So, what do I do if you have a seizure?” That’s the most common question whenever I tell a friend or colleague about my epilepsy. Throughout the years, I have had different ways to answer them.

My journey with epilepsy began my freshman year of college when I had a generalized tonic clonic seizure while sleeping in my dorm room. Since that first seizure in 2006, I have yet to gain full control over my seizures, which present as focal impaired awareness seizures. My seizure frequency has varied over the years. Some years I only have five seizures, other years I have had over 60. The scariest part of my seizures is that they happen without warning. I have had them at work, alone in an airport, while on public transit, and while walking alone to meet friends. Perhaps the scariest was when I had one while driving, which led to an accident. I have always felt it important to disclose my epilepsy to friends and colleagues, since disclosure would make me safer if they were aware.

I’ve lived independently and in many different cities for work, so it has always been important to have an answer ready when people ask what to do if I have a seizure. I try to educate them briefly on my “typical” type of seizure, while also going over what generalized tonic clonic seizures look like, since that would be when they need to call 911. I share that otherwise, they can sit with me until I come out of my seizure and become my usual self again. I let them know I have a note in my phone with my medications listed and I also give them a phone number in case of an emergency. Over the years this number has varied from a best friend, parent, or partner. When educating my friends and colleagues about seizures and how to keep me safe, it is clear that my focal impaired awareness seizures confused a lot of people. A few years ago, my husband was able to capture a seizure on video and I often share a brief clip of that video with others when educating them about my epilepsy.

Having a seizure action plan has been vital throughout my 15 years of living with epilepsy. By educating friends and colleagues over the years, I have learned that others genuinely appreciate being prepared and knowing what to do should I have a seizure. In the cases when they needed to act, they were comfortable, since they were taught what to look for and what to do. Having a seizure action plan has made it easy to keep all the important information about my epilepsy in one place. Developing a seizure action plan with my care team has made both me and my husband feel more prepared should an emergency situation arise.

Tayla and Brian’s Story
Perkin, Indiana, USA

Being the primary caregiver for a person with an ever-changing intractable epilepsy is a daunting task. We have to face the challenges of daily seizures, and we also have to work closely with our team of doctors to manage the negative side effects of AED, “controlling” seizures to the best of our ability and how the seizures effect our day-to-day life. Once we get past the complex medication schedule of multiple meds, dosages, and times, we also have the constant worry of seizure emergencies and admissions to the ICU. I am thankful to have a wonderful team of medical professionals that work very closely with me to provide the best care to my son, and we have multiple plans in place to treat seizure emergencies. 2020 was a rough year for everyone, but it was a horrible year for seizure emergencies in our house. We have had to make  multiple changes to our seizure action plan.

Our seizure plan was very basic. We give one emergency rescue medication for tonic-clonic seizures that last over 3 minutes, and a different rescue medication for seizure clusters. This care plan was used a few times last year with acceptable results. After our first admission in 2020, a third medicine was added to treat seizure clusters, to hopefully allow me to manage his seizures at home. Four days after we were discharged, we attempted to implement the new rescue medication plan for clusters of more than 5 minutes or for multiple seizures in 3 minutes. The new medicine didn’t work.  We ended up back at the ER to stop the non-stop seizures. Ten days later we had my son’s seizures under control again and added a new medication, removing the non-effective one. It worked for a few months but then we found ourselves in yet another seizure crisis. I follow the seizure action plan every time with directions to call on call our doctor between step 3 & 4 to alert them of our situation and let them know we were coming into the ER. It was a long battle but eventually, after 19 long days, the seizures were under control and we were starting our road to recovery. It’s tough caring for a child with severe epilepsy but we never give up,

Heidi’s Story:
Colorado, USA

Last night was particularly rough and I was unable to sleep because I had a nasty seizure.  It’s become par for the course as a 40-something patient with refractory temporal lobe epilepsy, diagnosed at 5-years-old.  Since that time, there have been countless medications, two brain surgeries, and a VNS implant.  Despite continued seizures, I am privileged to live a very big life. 

I received an unexpected email from a colleague asking if I would share my story for the newly formed SAP coalition from leading advocacy organization TS Alliance, LGS Foundation, and Dravet Syndrome Foundation. My honest response, a laugh, and a muttered, “What SAP?”  My 11-year-old, superstar daughter was sitting 5 feet away with the phone and mom’s magnet armed to stop any seizure activity that might rear its ugly face after a night of no sleep.  I had taken the appropriate medication to avoid seizure clusters, but she was prepared to notify medical personnel if needed and was generously babysitting me so I could take a needed nap.  Did I have a written SAP? Nope.  

I have made a habit of telling co-workers, mentors, and the wonderful woman that drives me to medical appointments, the airport, and the university for work exactly what a seizure looks like and how to respond.  However, I have neglected to write down a formal SAP and carry it with me.  People are inherently good and upon learning that I have epilepsy usually respond, “What should I do if you have a seizure?”  However, as I became responsible for my care (which paralleled the advent of technologies that I just might be too dependent on), the diligent time and care that a mother takes noting step-by-step guidelines for seizure response, medication lists, emergency numbers, and medical documentation to follow their child to school, camp, the ballpark, and sleepovers fell by the wayside.  I will be the first to admit that mom took better care of me than I do of myself.

Who took up the slack for mom?  My husband and 3 kids.  They know how to handle a seizure and when it has become a medical emergency.  I know better than to take for granted that I am surrounded by remarkable human beings.  I asked my daughter what she thought about developing a SAP with my neurologists while she was keeping a watchful eye on me and she agreed that it would be helpful even though she’s, “got this.”

I would have benefited from an SAP, but wasn’t prepared several times:

-I have had seizures in lab and was with co-workers that weren’t aware of my condition on a few occasions.  The SAP is not unlike the standard operating procedures we use for many lab activities.  I am learning it is may boost others’ comfort level as well as my own.

-Sharing a SAP with airline staff would have helped flight crew and other passengers respond to the seizure I had in flight returning from a conference. 

I am generally risk adverse, but do not limit myself, thus, a prepared SAP and a willingness to ask for help may only mean carrying the comprehensive document with me on my adventures.  Thank you to the TS Alliance, LGS Foundation, and Dravet Syndrome Foundation for reminding me to refocus and remember that I should attempt to manage my care in a manner that mom would. 

Karen and Dan’s Story
Columbus, Ohio
Individualized – Seizure Emergency Plan (I-SEP)

Last year, we became acquainted with the concept of an I-SEP. We saw immediately that it could be an important tool in helping our son with Lennox-Gastaut Syndrome (LGS) get appropriate intervention in a seizure emergency, in any setting, by any caretaker or emergency responder. That’s a pretty powerful piece of paper. When we began putting it together, we learned a few things too!

We learned that not all caregivers were on the same page and that could interfere with our ability to keep our son safe. My husband and I make decisions based on our experiences and observations. We discuss things and decide together. But after that, things got a little unnerving. We learned that not everyone on “Team Dan”, as we like to call it, has a shared understanding of what constitutes a seizure emergency for Dan, when to intervene, and with what, and how communication and data collection must be a component of everything we do.

We learned that not everyone on our team times or records seizure events the same way or has the same comfort level with the interventions. We learned that a seizure cluster, by definition, is a period of increased seizure activity, having two or more seizures in a 24-hour period. That’s most days in our world and not necessarily an emergency. So, we set out to define and describe Dan-style emergencies and to delineate what should be done at various benchmarks within an event. Then we teach the team what to do, when to do it, and how to do it.

We worked with our neurologist to put together a document that is clear and individualized for our boy’s emergencies. The home team was aligned and trained. We hope this results in less trips to the hospital, less injuries, and less brain damage. Dan’s I-SEP and related resources are EVERYWHERE, both paper and electronic versions. The “Go Bag” that stays with Dan wherever he goes includes all of the resources a caregiver could need to intervene as appropriate.

We hope YOU have learned about how an I-SEP might be helpful for your loved one!

Elizabeth and Spencer’s Story
St. Louis, Missouri, USA

Spencer has an appointment with her pediatric neurologist ever 2-3 months and we communicate in between visits, too. At the end of each appointment, we discuss Spencer’s seizure emergency plan. If it still seems workable, we leave it. If it needs tweaking, we work out a new plan. Regardless, I always walk away with a printed, updated copy of the plan. It’s fabulous. I keep one copy at home and another copy in our travel bag.

A couple of months ago, Spencer was at her dad’s house. She stays with him two nights per month. We have a system: if Spencer has a seizure during the night and it poses no immediate danger (meaning, if it’s less than five minutes, her breathing isn’t impacted, etc.) then he sends me a text. If she has another seizure, he calls me and I make decisions on how to proceed. One time, she was seizing again and again. I instructed him over the phone to give her the emergency rescue medication we use and I walked him through the process. But Spencer kept seizing, and then I was stumped. Thankfully, I have a printout of the seizure emergency plan! So I consulted it and I knew just how many more times she would seize and how many more doses of rescue med to give before calling 911 or taking her into the emergency room. I’m grateful to have it spelled out! I was also grateful that our doctor and I considered COVID-19 when we made the plan. He gave me lots of leeway to use multiple doses of rescue medication, which would hopefully ensure that I could handle it at home, lessoning the risk of going to the hospital during COVID-19.

(I had to drive to his apartment with additional doses of rescue medication at 3am, but whatever) 🙂

Someone recently asked me if I have a plan for if I test positive for COVID-19, and if it’s written down. No, and no! Ugh. My thinking is that I’ll just power through and take care of both myself and Spencer because I am her caregiver. I doubt she would go to her dad’s, because she would need to quarantine with me because we’re always together, thus would be exposed together. Her dad and my mom (who lives 10 hours away) are my backups if things go bad with me.

Kim and Kai’s Story
Calgary, Canada
Why to have a Seizure Care Action Plan

We started to use a seizure action plan for my daughter, Kai, in 2012. With the rare epilepsy diagnosis of Lennox-Gastaut Syndrome (LGS) we needed to have a clear plan what to do when presenting at a hospital coming in from school or home. This especially was needed as we like to travel to smaller towns within western Canada, and the potential risk that we may need to go into an Emergency Room (ER) with Kai and be treated by medical staff who have never seen a patient like her before. Even though typically my daughter would go into our Local ER, which is a world class pediatric facility, frontline ER staff are not specialized in one area. Having a seizure plan has made Kai’s ER visits smoother and her treatment is expedited so she gets care faster. It also decreases the consultations between the ER doctors and the Neurology department. When Kai requires emergency treatment, we present the letter below to either Paramedics and/or ER staff. The best thing about this letter we use, is that everyone has a quick snap shot of what Kai’s epilepsy is like and how to treat her. Health care professionals mainly only make it to step three, but that being said, they have really appreciated having this letter to determine how best to treat Kai’s seizures. The seizure action plan letter works! We have been in the ER department where the ER doctor has stated this is an amazing plan and saves time to treatment for seizure emergencies.

Jen and Theo’s Story:
Santa Barbara, California, USA

Like many families, we don’t have a formal Seizure Action Plan. It’s all in our heads. Not the best plan I admit. My son, Theo, divides his time between his dad’s house and mine, but we communicate regularly and fortunately it’s an amicable situation. One night, a few weeks ago, his dad phoned me close to midnight to tell me that Theo had been seizing every 2 minutes. He’d administered a drug that we use as an emergency rescue medication to stop cluster of seizures and was considering calling 911. But we hesitated as many do these days, because we were hoping to avoid being in a hospital environment because of COVID-19. We decided to wait 20 minutes, and every two minutes exactly, I could hear the horrible sounds of my Theo’s seizures through the phone. Fortunately, the time between seizures grew longer and longer until they finally stopped. When we discussed this with our son’s neurologist at his next appointment, we were told that we had done the wrong thing and we should never hesitate when our instincts tell us to call an ambulance.

There were several lessons learned that night:

  1. Have a written Seizure Action Plan that addresses situations just like this.
  2. Make sure this plan is available to caregivers other than ourselves – respite workers, his adult sisters, a significant other that isn’t the parent, emergency responders, hospital personnel, etc.
  3. Do not avoid a hospital visit because of COVID. If he needs to be there, then we just need to take him there.
  4. If an individual moves between 2 households, make sure the other parent is contacted and consulted when there is an emergency.

We didn’t have a Seizure Action Plan before, but now we do!