Benign familial neonatal convulsions; psychosocial adjustment to the threat of recurrent seizures

Forty families have experienced benign familial neonatal convulsions (BFNC) since it was first described by Rett and Teubel in 1964. [Rett A. and Teubel R. Neugeborenen Krampfe im Rahmen einer epileptisch belasten Familie. Wiener Klinische Wochenschrift 1964; 76: 609–613.] Diagnosis is based on a benign neonatal course, family history, and seizures which usually end spontaneously by six months of age. The absence of subsequent epilepsy makes BFNC a retrospective diagnosis. Consequently there is a considerable length of time during which parents may anxiously follow their child's development. We describe a child with BFNC whose family has experienced five generations of BFNC yet chose to react to the myths and misconceptions of epilepsy and circumvent updated experience supported by the recent medical literature. We have identified three areas in which appropriate physician intervention and patient education may reduce the magnitude of psychosocial disruptions: at the initial seizure, during childrearing and parenting, and in preparation of the patient for future independent decision making. By recognizing the magnitude of social, psychological, and economic disruptions affecting the child and family and by addressing communication issues during the initial diagnosis and follow-up period, we maximize our opportunity to break the cycle of mis-information and anxiety surrounding ‘benign' seizures.