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家长对患有德拉韦综合征的儿童发热及发热管理做法的看法。

Perceptions of fever and fever management practices in parents of children with Dravet syndrome.

机构信息

Inserm, U676, Paris, France.

出版信息

Epilepsy Behav. 2011 Aug;21(4):446-8. doi: 10.1016/j.yebeh.2011.05.003. Epub 2011 Jun 23.

Abstract

OBJECTIVE

The first seizure in Dravet syndrome is often considered a febrile seizure (FS), but shortly thereafter, both FSs and seizures without fever occur, leading to diagnosis. Fever remains a factor that easily precipitates seizures. We studied the perception and management of fever of parents of children with Dravet syndrome.

METHODS

We conducted this survey using an anonymous, self-administered questionnaire.

RESULTS

A total of 20 parents returned the questionnaire. Fever remains a trigger of seizures in 90% of patients. All parents have an accurate knowledge of fever and its management. The familial and socioprofessional impact of fever attacks appears to be very strong.

CONCLUSION

Fever represents a significant concern of parents of children with Dravet syndrome. The level of parental anxiety is high in case of fever. The anxiety seems related to fear of seizure recurrence leading to significant modification of parental behavior.

摘要

目的

婴儿痉挛症首次发作常被认为是热性惊厥(FS),但此后不久,无论是热性惊厥还是无热惊厥都会导致诊断。发热仍然是诱发癫痫发作的一个因素。我们研究了患有婴儿痉挛症儿童的父母对发热的认识和处理方式。

方法

我们使用匿名的、自填式问卷进行了这项调查。

结果

共有 20 位家长返回了问卷。90%的患者发热仍会引发癫痫发作。所有家长都对发热及其管理有准确的认识。发热发作对家庭和社会职业的影响似乎非常大。

结论

发热是患有婴儿痉挛症儿童的父母非常关注的问题。发热时,家长的焦虑程度很高。这种焦虑似乎与担心癫痫复发有关,导致家长行为发生重大改变。

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