Autoimmune encephalitis (AE) is a neurological autoimmune disease that represents a group of conditions in which the body’s immune system attacks healthy brain cells causing brain inflammation.
There are substantial challenges in assessing, recognizing, and diagnosing autoimmune encephalitis, especially in younger children when developmental regression occurs with the first symptoms of neurological and cognitive deficits.
Auto-antibodies in blood and cerebrospinal fluid tests are a clear disease biomarker. However, a negative result for autoantibodies presence does not necessarily exclude the possibility of AE underlying the illness.
Since symptoms associated with an AE diagnosis are often present in other neurological, psychiatric, and various medical conditions, the diagnosis is established by excluding possible causes that can produce these symptoms and conditions.
The symptoms of developmental regression most often are not an indication for AE diagnosis. Indication for AE diagnosis arises when symptoms become so severe and apparent that they require urgent intervention. Until then, a lot of time can pass.
The book describes one such journey.