COVID‐19 vaccine in patients with Dravet syndrome: Observations and real‐world experiences

Abstract

Objective Vaccination against the 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 vaccine side effects in patients with DS would aid caregivers and providers in decisions for and management of COVID‐19 vaccination. Methods A survey was emailed to the Dravet Syndrome Foundation's 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. Results 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 older than 12 years (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 younger than 12 years, 60 of whom indicated they would not seek COVID‐19 vaccination when their child with DS became eligible. Reasons for vaccine hesitancy were fear of increased seizure activity and concerns about vaccine safety. Significance 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 occurred in only 13% of vaccinated individuals, and none had status epilepticus. This study provides critical and reassuring insights for caregivers and health care providers making decisions about the safety of COVID‐19 vaccinations for individuals with DS.

COVID-19 vaccination-related exacerbation of seizures in persons with epilepsy

“… [5] , [6] , [7] Specific groups of PWE may differ in their vulnerability, for example, a study of 120 patients with Dravet Syndrome found 13% of patients had a self-reported vaccine-associated seizure exacerbation. [8] …”

“… [11] Furthermore, COVID-19 may be associated with hypoxia, stroke, systemic inflammatory response syndrome and encephalitis, all capable of precipitating acute symptomatic seizures in already vulnerable patients. [8] Therefore the risk of neurological and systemic complications of COVID infections far outweighs the low risk of vaccine-associated seizure exacerbation.…”

A cross‐sectional study of COVID‐19 vaccination patterns among patients with epilepsy in Hong Kong

“…An Italian cohort study, perhaps one of the largest studies, showed that worsening of seizures after vaccination only occurred in 7.65%, mainly in the 7 days following the vaccine administration and these patients usually had a higher mean number of prevaccine seizure frequency 13 . Regarding the issue of vaccination hesitancy and alleged side effects among patients with genetic etiology, a recent study on Dravet's syndrome suggested that vaccination hesitancy was indeed the case, but the risk of seizure worsening was estimated at 13%, with the authors commenting that reassurance should be given to patients, caregivers as well as health care providers about vaccination among patients with epilepsy 14 . These experiences are, in general, in keeping with our current study that the majority of patients with epilepsy will either tolerate the vaccine very well, or have side effects that are likely to be balanced out by the benefit of protection from COVID‐19.…”

Safety and adverse events following COVID‐19 vaccination among people with epilepsy: A cross‐sectional study

“…In a separate study, Lu and colleagues reported that patients with tuberous sclerosis complex tolerated inactivated COVID‐19 vaccines well with only 25% of them developing mild AEFI. 38 , 39 …”