Having a child with Dravet syndrome attend school can pose many challenges and concerns for parents. It is important that you give the school staff the information and training they will need to keep your child safe.
A great place to start is the Seizure Action Plan (SAP) Coalition Virtual Backpack. It is a one-stop resource that links out to the information you need to help you prepare for Back to School or IEP meetings. Be sure to start by reviewing our Back-to-School Checklist to assure you have the tools and resources to start the school year right. The virtual backpack includes:
- Update your seizure action plan (SAP), including your seizure emergency plan, and discuss with your doctor.
- Schedule a meeting with school staff (or incorporate it into your scheduled IEP meeting) to discuss your child’s needed accommodations and SAP.
- Complete school medication forms, if required.
- Encourage school staff to complete training on how to respond to a seizure.
- Assemble educational packets for teachers or other school staff.
- Watch Shelly Meitzler, TSC Alliance Community Programs Manager, East, sharing how to discuss seizures with educators, school professionals and classmates.
- Watch the SAP Coalition Town Hall, ABC to SAP: Why Your Child Needs a Seizure Action Plan Webinar, and learn from an expert panel.
The Seizure Action Plan (SAP) Coalition was formed by the Dravet Syndrome Foundation, the LGS Foundation, and the TSC Alliance in 2020 to fill an unmet need in the epilepsy community. This collaborative effort is designed to raise awareness of what a Seizure Action Plan (SAP) is; the importance of a SAP in the health management of those with epilepsy; and resources to develop an individualized SAP. Special thanks to Neurelis and UCB, who help support the important work of the SAP Coalition through unrestricted educational grants.