COVID-19 | For Patients and Families

Resources from other organizations represent the expertise and viewpoints of those groups, and AES appreciates the opportunity to make them easy for our members to access.

Risks to Patients with Epilepsy

In younger children, the fever that accompanies COVID-19 may exacerbate seizures, as might any febrile illness. The main known elevated risk factors related to COVID-19 are age, respiratory disease, and other chronic medical conditions not related to epilepsy. As for all, people with epilepsy should adhere to the CDC recommendations for reducing the risk of infection.

Links and Resources

• Concerns about Coronavirus (prepared by the Epilepsy Foundation) provides advice for patients with epilepsy and their families
• FDA COVID-19 Resources for Patients
• COVID-19: Information for Families of Children and Youth with Special Health Care Needs from the American Academy of Pediatrics 
• A Telemedicine Visit Checklist, available in English and Spanish, offered by the Epilepsy Learning Healthcare System (ELHS)) to help patients and families prepare for telemedicine visits
• For patients whose income or health insurance status may have changed:
  • Medicare.gov: 6 ways to get help with prescription costs
  • HealthWell Foundation
• Child Neurology Foundation: Educational resources for families during the COVID-19 pandemic
• Citizens United for Research in Epilepsy (CURE); COVID-19 and Epilepsy, Ask the Experts Live Stream (recorded March 18, 2020)
• Protecting Medically Complex and/or Immune-suppressed Children with Epilepsy from COVID-19: DEE-P Connections and International Foundation for CDKL5 Research have a variety of resources including webinars addressing common concerns related to COVID-19 for families living with Developmental and Epileptic Encephalopathies (DEEs)
• TSC Alliance COVID-19 Vaccine Statement, August 18, 2021
• Tuberous Sclerosis Alliance’s COVID-19 and TSC Resources page for people with tuberous sclerosis complex and their families and loved ones 
• Dup15q Alliance resources for families
• Women with epilepsy support groups and educational materials