Remote Team-work Management of NORSE During the COVID-19 Lock-down

Abstract New-Onset Refractory Status Epilepticus (NORSE) is rare condition and sharing knowledge is vital in its management, based on strict collaboration between multiple specialists, continuous EEG (c-EEG) monitoring and prompt therapy modification. The COVID-19 pandemic challenged many of these established practices, due to “social distancing” measures, making it necessary to work around physical restrictions. We report a case of a 10-year-old with NORSE, admitted in a Paediatric Intensive-Care Unit and monitored with c-EEG and amplitude-integrated-EEG. The monitoring interface was live-streamed using video-conference web-based platforms allowing remote viewing. Multiple daily web-meetings took place between team members, where real-time therapy response was evaluated and confronted with medium-term trends in the epileptic activity, dictating further treatment and diagnostic steps. In addition to the known use of telemedicine in chronic conditions, we report how its use can be exploited to treat urgent conditions such as NORSE. By taking advantage of new tools and virtual environments, we were able to share treatment and diagnostic decisions and guarantee real-time therapy adjustments and a coherent course in treatment despite restrictions necessary for the COVID-19 pandemic. The constant specialist monitoring and the coherent and on-time communication of the patient’s condition relieved the family stress, usually complained in these situations.