“We teach the team what to do, when to do it, and how to do it.”

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!