Dravet syndrome causes febrile or afebrile seizures in patients beginning in their first year. Often, those who have DS will find that it evolves to status epilepticus. DS is rare and occurs in between 3% and 7% of infant patients with epilepsy. When these patients enter their second year, they will often exhibit different types of seizures along with other issues. This can include motor dysfunction, cognitive plateauing, and behavioral issues. Premature death occurs in between 10% and 15% of these patients. Around half of those deaths are from sudden unexplained death in epilepsy (SUDEP).
With the arrival of COVID-19, it has been more difficult for many people to get the healthcare they need. Seizure recurrence experienced by DS patients means that they and their families are a vulnerable population. Infections and illness can trigger seizures in these patients, and having recurrent respiratory infections is common. These patients and their families are accustomed to protecting against infection because they are common. Protective measures were used even before the coronavirus pandemic. It is believed that the precautions these patients and their families take helped many to avoid COVID-19 infections.
Because of the pandemic, though, it is now more dangerous for the patients to get to the doctors and to get the help and care that’s needed in many cases. The goal of a recent study in Epilepsia One looked into the impact that the coronavirus lockdowns have had on DS patients and their families.
Methods Used in The Study
The researchers created an online survey for caregivers of patients with Dravet syndrome. The survey was divided into six sections:
229 caregivers completed the survey and 118 of the patients were male. The responses of 10 of the caregivers were not used because they lived in a location that did not have a mandatory lockdown. The median age of patients in the study was nine years, 10 months.
48% of the families that responded said that even before the pandemic, they were undertaking protective measures. They said that they were used to wearing similar types of protection as came to be mandated during the pandemic. 88% of the responders said that they had modified the protection measures to meet the official recommendations.
Only one of the patients in the study had respiratory symptoms and fever, along with a positive COVID-19 test. The patient’s seizures did not worsen during this time.
The study showed that most of the individuals had stable epilepsy when they were in lockdown. However, there were behavior disorders that became worse for about one-third of the patients.
Although the COVID-19 pandemic and the lockdowns caused difficulties for patients with DS, researchers found that it did not have as much of a negative effect on their seizures as some worried could happen. The main issues that occurred during the lockdown were behavioral.
It was discovered that there was not much remote psychological support for families during the lockdown, even though the respondents said that they had expressed a need for this type of support. Families liked the idea of having remote contact for this type of treatment during the pandemic. They also feel that remote help would be beneficial to many families even after the pandemic, such as for those who would otherwise have to travel long distances to receive help at the best centers.