Cossu Alberto, Lo Barco Tommaso, Darra Francesca, Fontana Elena, Fiorini Elena, Marangone Martina, Biban Paolo, Dalla Bernardina Bernardo, Cantalupo Gaetano
Child Neuropsychiatry (FD, TLB, FD, GC), Department of Surgical Sciences, Dentistry, Gynecology and Pediatrics, University of Verona; Clinical and Experimental Medicine PhD Program (TLB), University of Modena and Reggio Emilia; Child Neuropsychiatry Unit (FD, E. Fontana, E. Fiorini, MM, GC), and Pediatric Intensive Care Unit (PB), University-Hospital of Verona; and Center for Research on Epilepsies in Pediatric Age (CREP) (BDB), Verona, Italy.
Neurol Clin Pract. 2021 Apr;11(2):e170-e173. doi: 10.1212/CPJ.0000000000001027.
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 coronavirus disease 2019 (COVID-19) pandemic challenged many of these established practices because of "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 pediatric intensive-care unit and monitored with c-EEG and amplitude-integrated EEG. The monitoring interface was livestreamed using videoconference 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.
新发难治性癫痫持续状态（NORSE）是一种罕见病症，基于多学科专家的密切协作、持续脑电图（c-EEG）监测以及及时调整治疗方案，分享相关知识对其管理至关重要。2019年冠状病毒病（COVID-19）大流行因“社交距离”措施对许多既定做法构成了挑战，使得有必要突破物理限制开展工作。我们报告了一例10岁NORSE患儿，入住儿科重症监护病房，接受c-EEG和振幅整合脑电图监测。监测界面通过基于网络会议的平台进行直播，实现远程查看。团队成员每天多次召开网络会议，评估实时治疗反应，并结合癫痫活动的中期趋势，据此决定进一步的治疗和诊断步骤。除了远程医疗在慢性病治疗中的已知应用外，我们还报告了如何利用其治疗NORSE等急症。通过利用新工具和虚拟环境，尽管COVID-19大流行需要采取限制措施，我们仍能够分享治疗和诊断决策，确保实时调整治疗方案并保证治疗过程连贯。持续的专家监测以及关于患者病情的连贯且及时的沟通缓解了通常在这些情况下困扰家属的压力。
