COVID-19 DEE Research


While there has been a lot of research on COVID-19 in the general population, none of this work has been in the DEE space. Therefore, we created a survey to better understand how families who have loved ones with DEEs have navigated decisions about whether to vaccinate their child with a DEE against COVID-19, document any side effects and better understand the severity of any COVID-19 infections for those with rare epilepsies.

Our team is made up of amazing DEE researchers and clinicians including:

Daniel Freedman DO: Assistant Professor in the Department of Neurology at Dell Medical School and a board-certified pediatric neurologist in UT Health Austin Pediatric Neurosciences at Dell Children’s in Texas

Tina Sosa MD, Msc: Assistant Professor in the Division of Pediatric Hospital Medicine and Associate Chief Quality Officer at Golisano Children’s Hospital in NY

Anne Berg PhD: Adjunct Professor of Neurology – Epilepsy/Clinical Neurophysiology and COMBINEDBrain

Richard M. Carpiano PhD, MPH: Professor of Public Policy - University of California Riverside

This is a recording of the webinar, “What are we learning about COVID-19 vaccines and infections in those with rare epilepsies?”, which was held on July 21st, 2022.

Are you curious about the safety of COVID-19 vaccines for those under 5 with rare epilepsies?

Are you unsure about whether to get your child with a rare epilepsy vaccinated against COVID-19?

Listen in to hear from an incredible panel of experts to get your questions answered about COVID-19 vaccines and infections.

AES Conference 2022

Our late-breaking abstract on our COVID-19 work was accepted by the American Epilepsy Society to present at their 2022 conference! Click on the poster to make it bigger!

Main Poster Insights

COVID-19 Illness:

  • 51% of respondents reported mild COVID cases, 37% moderate, and 12% severe
  • 80% of DEE children were unvaccinated when infected
  • Fever, cough, and congestion were the most common symptoms
  • 13% required hospitalization, the majority of which were in the ICU, 1 death was reported


COVID-19 Vaccine:

  • 60% of respondents vaccinated or intended to vaccinate their DEE child
  • 71% had no side effects
  • Reported side effects included fever, lethargy, soreness, and pain
  • Increased seizures in 7 of 22 respondents
  • Most side effects lasted 24-48 hours
  • The majority of respondents got information about the vaccine from their healthcare provider. The second most popular source was medical journals, and the third was the CDC.


Pandemic Stressors (Listed from Highest % of Families Affected to Lowest %):

  • Stress
  • Exhaustion
  • Social Isolation
  • Loss of Nursing
  • Financial Strain
  • Loss of Income
  • Housing Insecurity

Coming Soon: Recap of COVID-19 Research for Community