As we continue to work toward recovery from the COVID-19 pandemic, vaccines remain the best tool to stop sickness from COVID-19. Serious issues from COVID-19 vaccines are rare, but severe illness from COVID-19 is still a risk. Most information about these risks has come from people without any existing medical conditions. However, people with epilepsy often face increased seizure risk and other medical complications daily. For example, vaccinations and fevers can commonly trigger seizures in people with Dravet syndrome. Additional information regarding COVID-19 infection and vaccination risks in relevant patient groups may help people with epilepsy and their caregivers in making vaccination decisions.
Dravet Syndrome and Vaccinations
Dravet syndrome is a rare genetic form of epilepsy with difficult to treat seizures that begin in the first year of life. Patients with Dravet syndrome also experience other symptoms that affect behavior, cognition, speech, movement, and sleep. There are other common seizure triggers for patients with Dravet syndrome which include flickering lights, stress, excitement, changes in temperature, and illness. Understandably, the risk for increased seizures following vaccination can cause vaccine hesitation for people with Dravet syndrome. However, decisions around vaccination should be weighed with the risk of infection, illness, and fever, which can also trigger increased seizure activity.
Studying the Effects of COVID-19 Vaccination in Dravet Syndrome
In an effort to help families make informed decisions, the Dravet Syndrome Foundation worked with their Medical Advisory Board to develop a study to survey the experiences of patients with Dravet syndrome following COVID-19 vaccination. At the time of the study, COVID-19 vaccines were approved for individuals above the age of 12 years. The survey received responses from 120 caregivers to patients with Dravet syndrome that had received COVID-19 vaccinations. The main side effects reported were tiredness and soreness at the injection site within the first 24 hours. A total of 16 patients (out of 120) experienced seizures following either the first or second dose of COVID-19 vaccination. None of those patients experienced status epilepticus, which is a common concern for patients with Dravet syndrome. Following vaccination, several caregivers provided comments to say that the increase in seizure activity seemed to be related to fever.
Should People with Dravet Syndrome Get Vaccinated for COVID-19?
Overall, the risk associated with COVID-19 vaccination in patients with Dravet syndrome appears low. On the other hand, COVID-19 infection continues to pose a risk for significant illness and death. Individuals with disabilities can often be at an increased risk of COVID-19 infection due to underlying medical conditions and potential for exposure. Another study found that patients with neurological disorders may be more likely to experience neurologic symptoms related to COVID-19 infection. Just over 10% of individuals with Dravet syndrome from this study experienced an increase in their normal seizure activity following the COVID-19 vaccine. Patients who are at particular risk of breakthrough seizures should work with their healthcare providers to develop a preventative plan, which might involve short-term use of medications to reduce the likelihood of fever or breakthrough seizures. Given the risks of infection versus vaccination, expert clinicians continue to recommend patients with Dravet syndrome receive COVID-19 vaccinations.
Veronica Hood, PhD, is the Scientific Director at the Dravet Syndrome Foundation. Along with the Dravet Syndrome Foundation Medical Advisory Board, Dr. Hood conducted a study to survey the experiences of patients with Dravet syndrome following COVID-19 vaccination.