Autonomic symptoms frequently occur during epileptic seizures, not as a reaction to motor manifestations, but by activation of central autonomic networks. Among the autonomic symptoms (cardiovascular, respiratory, gastrointestinal, cutaneous, papillary, genital, sexual, and urinary) cardiorespiratory arrest and ictal syncope can lead to serious complications such as sudden unexplained death (SUDEP). In children autonomic symptoms are the most common manifestation in Panayiotopoulos syndrome (81%)(Panayiotopoulos 2004) and temporal lobe epilepsy.

As a child neurologist with a special interest in epilepsy I see a large number of children and their parents. I am faced with numerous questions relating to the fears the parents have regarding the possibility of losing their child from an epileptic seizure. These fears are proportional to previous seizure experience and are increased by the outdoors activities of their children, nocturnal seizures, and irregular parental working hours resulting in inadequate care. Even though children with epilepsy have an increased risk of death, SUDEP is very rare. In the majority of children mortality is due to the underlying neurological disorder, not the seizures. All parents and children who are able to read are supplied with written information explaining epilepsy facts, care, the treatment of an acute seizure (rectal diazepam), and early identification of an epileptic event, particularly during sleep (alarms).

In treatment, care must be taken to avoid misdiagnosing cardiac dysfunction as epilepsy. Special attention is required for those children with medically resistant epilepsy, polypharmacy, and long lasting autonomic status.

Although SUDEP is discussed among professionals in different meetings, the issue is rarely discussed with the parents except with those seeking the information. Conversely, disclosure, in the absence of the patient seeking the information, may causally adversely affect quality of life of the family and the child by increasing overprotection and anxiety levels. This can in turn lead to behavioural problems, low self-esteem, poor self-image, long lasting dependency, and a negative personality.

The office of the Greek association is hosted within the quarters of the neurology department, adjacent to a very large epilepsy clinic where discussions with all those caring for these patients take place daily. Undue fears are not provoked unless questions are specifically asked and detailed professional answers are given based on medical facts.

Knowledge about SUDEP remains limited. However, understanding the pathophysiology of the autonomic symptoms may help us to understand the mechanisms underlying SUDEP.

Athanasios Covanis
Head Neurology Department
The Childrens Hospital ‘Agia Sophia’Greece
President, The Greek Association Against Epilepsy

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.