Coping with a child with Dravet syndrome: insights from families.
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.
Nolan
Kathleen
K
Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia.
Camfield
Carol S
CS
Camfield
Peter R
PR
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000927:Anticonvulsants / Q000493:pharmacokinetics / Q000627:therapeutic use; D001289:Attention Deficit Disorder with Hyperactivity / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D002408:Catheters, Indwelling; D002648:Child; D002653:Child Behavior Disorders / Q000523:psychology; D002675:Child, Preschool; D017281:Cost of Illness; D004351:Drug Resistance; D004632:Emergency Medical Services; D004830:Epilepsy, Tonic-Clonic / Q000188:drug therapy / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D008607:Intellectual Disability / Q000523:psychology*; D008297:Male; D016487:Parenting / Q000523:psychology; D012144:Respite Care; D012657:Self-Help Groups; D012801:Sibling Relations; D012934:Social Isolation; D013226:Status Epilepticus / Q000188:drug therapy / Q000523:psychology*
D000927:Anticonvulsants