Avoiding anaesthetics after multiple failed drug‐induced comas: an unorthodox approach to management of new‐onset refractory status epilepticus (NORSE)

New‐onset refractory status epilepticus (NORSE) is a rare, poorly understood and often catastrophic condition. There is little guidance available for management. Here, we describe the course of a 19‐year‐old man with NORSE who was treated successfully with a new approach. Our patient was initially treated with first‐, second‐ and third‐line agents including a total of seven failed drug‐induced coma courses until the 30 th day of hospitalization. When withdrawal of care was contemplated, management was then assumed by dedicated epileptologists and treatment course was changed. An unorthodox decision was made to avoid IV anaesthetics unless there were generalized bisynchronous tonic‐clonic or generalized non‐convulsive (electrographic) seizures. This approach allowed real‐time assessment of treatment response to aggressive non‐sedating AED therapy while the multifocal convulsive and non‐convulsive seizures were ongoing. It also eliminated potentially fatal IV anaesthetic‐induced complications and prevented anaesthetic withdrawal seizures. This was effective in achieving full recovery in our patient. The patient's awakening also changed the perspective of family members and care providers, avoiding premature withdrawal of care, which is often the cause of death in similar patients.