{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,11]],"date-time":"2026-03-11T23:11:46Z","timestamp":1773270706347,"version":"3.50.1"},"reference-count":21,"publisher":"Cambridge University Press (CUP)","issue":"S3","license":[{"start":{"date-parts":[[2016,6,6]],"date-time":"2016-06-06T00:00:00Z","timestamp":1465171200000},"content-version":"unspecified","delay-in-days":5,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Can. J. Neurol. Sci."],"published-print":{"date-parts":[[2016,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>A child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1\u00bd years: with episodes of febrile <jats:italic>status epilepticus<\/jats:italic> but normal development; (2) age 1\u00bd to ~6-10 years: with frequent seizures of varying types, developmental stagnation, behavioural and sleep problems; (3) after ~10 years: improvement in seizures, deteriorating gait, intellectual disability but some developmental gains. Complete seizure control is rare\u2014simply prescribing medication is inadequate to help families. Based on structured interviews with 24 families and confirmed by more informal discussions with other families, we suggest strategies for coping with this catastrophe. A child with Dravet syndrome usually means that one parent cannot work\u2014financial pressures should be anticipated. In Stage 1, the approach to <jats:italic>status<\/jats:italic> should include a written protocol. An indwelling catheter for rapid venous access may be helpful. In Stage 2, assistance finding qualified babysitters is required, and the extended family needs encouragement to help. Appropriate equipment, rescue medication and protocols should travel with the child. Siblings may benefit from a system of one parent \u201con call.\u201d An internet support group provides an invaluable lifeline. In Stage 3, family isolation may be extreme\u2014respite care and personal time for parents are important. Death from <jats:italic>status<\/jats:italic>, accidents and SUDEP (sudden unexplained death in epilepsy) occurs in 15%. Fear of SUDEP needs to be addressed. Moving from paediatric to adult care is frightening; an epilepsy transition clinic is useful. Attention to these realities may improve the quality of life for both child and family.<\/jats:p>","DOI":"10.1017\/cjn.2016.248","type":"journal-article","created":{"date-parts":[[2016,6,6]],"date-time":"2016-06-06T08:48:03Z","timestamp":1465202883000},"page":"S9-S12","source":"Crossref","is-referenced-by-count":29,"title":["Helping Families Cope with the Severe Stress of Dravet Syndrome"],"prefix":"10.1017","volume":"43","author":[{"given":"Peter","family":"Camfield","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carol","family":"Camfield","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathleen","family":"Nolan","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2016,6,6]]},"reference":[{"key":"S0317167116002481_ref12","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2011.03053.x"},{"key":"S0317167116002481_ref18","doi-asserted-by":"publisher","DOI":"10.1016\/S1059-1311(97)80049-0"},{"key":"S0317167116002481_ref13","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2011.03012.x"},{"key":"S0317167116002481_ref15","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000000521"},{"key":"S0317167116002481_ref3","doi-asserted-by":"publisher","DOI":"10.1017\/S0012162206001629"},{"key":"S0317167116002481_ref6","doi-asserted-by":"publisher","DOI":"10.1016\/j.braindev.2009.01.001"},{"key":"S0317167116002481_ref8","doi-asserted-by":"publisher","DOI":"10.1136\/adc.85.6.510b"},{"key":"S0317167116002481_ref21","doi-asserted-by":"publisher","DOI":"10.1080\/13668250802094141"},{"key":"S0317167116002481_ref17","doi-asserted-by":"publisher","DOI":"10.1111\/epi.12707"},{"key":"S0317167116002481_ref5","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2003.tb00923.x"},{"key":"S0317167116002481_ref9","first-page":"125","article-title":"Home use of rectal diazepam to prevent status epilepticus in children with convulsive disorders","volume":"4","author":"Camfield","year":"1989","journal-title":"Arch Dis Child"},{"key":"S0317167116002481_ref7","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2015.05.008"},{"key":"S0317167116002481_ref14","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0077843"},{"key":"S0317167116002481_ref19","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2013.07.015"},{"key":"S0317167116002481_ref1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2011.03129.x"},{"key":"S0317167116002481_ref2","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2014.03.014"},{"key":"S0317167116002481_ref10","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(05)66909-7"},{"key":"S0317167116002481_ref16","doi-asserted-by":"publisher","DOI":"10.1002\/ana.22393"},{"key":"S0317167116002481_ref4","doi-asserted-by":"publisher","DOI":"10.1177\/0883073808314162"},{"key":"S0317167116002481_ref20","doi-asserted-by":"crossref","first-page":"182","DOI":"10.1542\/peds.2011-0969","article-title":"Supporting the health care transition from adolescence to adulthood in the medical home","volume":"128","author":"Cooley","year":"2011","journal-title":"Pediatrics"},{"key":"S0317167116002481_ref11","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2015.02.030"}],"container-title":["Canadian Journal of Neurological Sciences \/ Journal Canadien des Sciences Neurologiques"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S0317167116002481","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,4,19]],"date-time":"2019-04-19T04:01:33Z","timestamp":1555646493000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S0317167116002481\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,6]]},"references-count":21,"journal-issue":{"issue":"S3","published-print":{"date-parts":[[2016,6]]}},"alternative-id":["S0317167116002481"],"URL":"https:\/\/doi.org\/10.1017\/cjn.2016.248","relation":{},"ISSN":["0317-1671","2057-0155"],"issn-type":[{"value":"0317-1671","type":"print"},{"value":"2057-0155","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,6]]}}}