At this time there is still no known cure or treatment for COVID-19. Vaccination against the severe acute respiratory syndrome coronavirus 2 (SARS-CoV2) remains the best way to reduce the risk of severe illness from COVID-19. Children are reported to tolerate the illness better than older adults, but data are lacking about the impact in children with underlying illness or complex medical histories. Some recent reports have suggested that underlying neurological disease may predispose patients to neurological symptoms of COVID-19 (LaRovere et al 2021). We remind the community that the best approach we have right now is to continue to protect against getting COVID-19: vaccination when eligible, social distancing, frequent hand washing, masking while in public, avoiding any unnecessary contacts and separating from ill contacts in your home. Additionally, patient families should continue to work with their loved one’s neurologist to manage seizures as best as possible to avoid any unnecessary trips to the hospital.

COVID-19 Vaccination

  • Vaccinations, in general, are recommended for patients with Dravet syndrome. Due to the risk of breakthrough seizures following vaccination, patients and caregivers may want to discuss preventative measures with their neurologist prior to COVID-19 vaccination such as antipyretics for fever prevention and bridge doses of anti-seizure medications.
  • DSF and our Medical Advisory Board performed a survey of the community to collect information on side-effects following COVID-19 vaccination. A summary of the results can be reviewed in this blog post from August 2021.
      • Overall, COVID-19 vaccination was well tolerated among 120 individuals, with 50% of individuals experiencing no side effects from COVID-19 vaccination. While 13% of individuals did experience some increased seizure activity following a dose of a COVID-19 vaccine, there were no reports of status epilepticus.
      • DSF presented a poster at the 2021 American Epilepsy Society Meeting detailing the results.
      • This work was published in Epilepsia in 2022 and is openly available for download:
        Hood, V., Berg, A.T., Knupp, K.G., Koh, S., Laux, L., Meskis, M.A., Zulfiqar-Ali, Q., Perry, M.S., Scheffer, I.E., Sullivan, J., Wirrell, E., Andrade, D.M., 2022. COVID-19 vaccine in patients with Dravet syndrome: Observations and real-world experiences. Epilepsia.
  • Dravet Syndrome UK worked with clinicians on a similar survey of vaccinated individuals detailed in this guest blog and in a published manuscript (Clayton et al 2021). Similar to the US survey, 20% of individuals did experience some increased seizure activity following COVID-19 vaccination.
  • DSF’s Scientific Director wrote this statement about the considerations for COVID-19 vaccines that use adenovirus vectors for future gene therapies.
  • The Epilepsy Foundation has a webpage of information on COVID-19 vaccines for individuals with epilepsy.

COVID-19 and Dravet Syndrome

  • DSF compiled a community FAQ surrounding COVID-19 in this blog post from March of 2020.
  • Dravet Syndrome UK ran a study to understand the impacts of the COVID-19 pandemic on families and individuals with Dravet syndrome. The results are summarized in this blog post and are now published (Balestrini et al 2020)

Other Resources

We have compiled important resources below regarding COVID-19 for our professional community that treats patients with Dravet syndrome. If you have a resource you think should be added, please email us.

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