Vaccination against SARS-CoV-2 virus is a primary tool to combat the COVID-19 pandemic. However, vaccination is a common seizure trigger in individuals with Dravet syndrome (DS). Information surrounding COVID-19 vaccines side-effects in patients with DS would aid caregivers and providers in decisions for and management of COVID-19 vaccination.
A survey was emailed to the Dravet Syndrome Foundation’s (DSF) Family Network and posted to the Dravet Parent & Caregiver Support Group on Facebook between May and August 2021. Deidentified information obtained included demographics and vaccination status for individuals with DS. Vaccine type, side effects, preventative measures, and changes in seizure activity following COVID-19 vaccination were recorded. For unvaccinated individuals, caregivers were asked about intent to vaccinate and reasons for their decision.
Of 278 survey responses, 120 represented vaccinated individuals with DS (median age 19.5 years) with 50% reporting no side effects from COVID-19 vaccination. Increased seizures following COVID-19 vaccination were reported in 16 individuals, but none had status epilepticus. Of the 158 individuals who had not received a COVID-19 vaccination, 37 were over the age of 12 (i.e., eligible at time of study) and only six of these caregivers indicated intent to seek vaccination. The remaining 121 responses were caregivers to children under the age of 12, 60 of whom indicated they would not seek COVID-19 vaccination when their child with DS is eligible. Reasons for vaccine-hesitancy were fear of increased seizure activity and concerns about vaccine safety.
These results indicate COVID-19 vaccination is well-tolerated by individuals with DS. One main reason for vaccine hesitancy was fear of increased seizure activity, which only occurred in 13% of vaccinated individuals and none had status epilepticus. This study provides critical and reassuring insights for caregivers and healthcare providers making decisions about safety of COVID-19 vaccinations for individuals with DS.