Make sure that teachers and staff who will be in regular contact with your child have a packet of information on your child’s disease state so that they can better understand their challenges and needs. For those with a Developmental Epileptic Encephalopathy (DEE) – such as Dravet syndrome, Lennox-Gastaut syndrome, Tuberous Sclerosis Complex – we highly encourage you to include educational materials from the associated advocacy organization that gives a complete picture of the health struggles, in addition to seizures.
Suggestions for what to include in your packets:
- A Letter of Introduction – be sure to include your child’s strengths, triggers, ways to calm them, safety issues, communication profile, personal fact sheet that highlights health concerns, food allergies, medications, etc. You might want to also include a photo of your child.
- Your child’s Seizure Action Plan, including their Seizure Emergency Plan. This plan will include such things as emergency contact information, physician information, rescue medication doses, etc.
- Printable patient resources or training kits from rescue medication manufacturers, that help explain administration.
- Brochures or medical literature from the advocacy organization associated with your child’s disease state.
- General seizure first aid guidelines for all seizure types (see an example from the Epilepsy Foundation).