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Journal of Child Neurology
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Coping With a Child With Dravet Syndrome: Insights From Families

Kathleen Nolan, BS

Department of Pediatrics, Dalhousie University

Carol S. Camfield, MD, FRCP(C)

Department of Pediatrics, Dalhousie University, IWK Health Centre Halifax, Nova Scotia

Peter R. Camfield, MD FRCP(C)

Department of Pediatrics, Dalhousie University, camfield{at}dal.ca, IWK Health Centre Halifax, Nova Scotia

Dravet syndrome is a truly catastrophic childhood-onset epilepsy. Families are faced with repeated episodes of status epilepticus, intractable seizures, mental handicap, behavior disorders, and a life of dependency; understandably, coping with Dravet syndrome is very difficult. Twenty-four families with a child with Dravet syndrome were interviewed and identified some practical suggestions to improve their daily life. These included inserting an indwelling venous access device, creating a portable microenvironment, writing an emergency department protocol, establishing emergency routines for the family, assigning a parent on call to lessen the effect on siblings, creating personal time to decrease parental stress, finding respite care, and contacting an Internet support group. Unresolved and common issues included transition to adult care, the utility of early diagnosis, and social isolation. These solutions and issues may be helpful to many families with a child with Dravet syndrome and possibly other severe childhood-onset epilepsies.

Key Words: Dravet syndrome • management • social problems • Internet support

This version was published on June 1, 2008

Journal of Child Neurology, Vol. 23, No. 6, 690-694 (2008)
DOI: 10.1177/0883073808314162
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