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王丽娟.13例儿童结节性硬化症合并癫痫的护理[J].上海护理,2020,20(9):
13例儿童结节性硬化症合并癫痫的护理
DOI：
中文关键词:  结节性硬化症  癫痫  儿童  护理
英文关键词:
基金项目:科研项目：武汉市科技创新平台—儿童神经疾病临床医学研究中心资助项目（武科计2014-160号）
作者单位E-mail
王丽娟* 华中科技大学同济医学院附属武汉儿童医院神经内科 1226957472@qq.com 
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中文摘要:
      【摘要】 目的 探讨儿童结节性硬化症合并癫痫的护理。方法 收集2015年1月至 2018年2月儿童结节性硬化症合并癫痫的患儿13例，对患儿心理护理、癫痫发作期护理、抗癫痫药物的服药以及皮肤色素脱失斑护理指导，建立医护同组随访模式。结果 13例患儿症状均控制出院，未出现舌咬伤或骨折等意外事件。1例患儿发生癫痫持续状态再次入院，1例患儿发生坠床不良事件，13例患儿通过皮肤涂抹雷帕霉素软膏后，皮肤色素脱失斑范围均有所缩小。结论 对结节性硬化症合并癫痫的患儿实施针对性的护理干预措施，能提高治疗效果，降低并发症发生率。
英文摘要:
      [Abstract] Objective To study the admission nursing and out-of-hospital care management for children with tuberous sclerosis complicated with epilepsy. Methods The clinical data of 13 children with tuberous sclerosis complicated with epilepsy from January 2015 to February 2018 were collected. Nursing guidance for epilepsy symptoms, medication guidance for antiepileptic drugs, rehabilitation guidance, skin care, room management follow-up and regular follow-up management were performed. Results Among these children, 9 were boys and 4 girls. There were no accidents such as tongue bites or fractures. In this group, one family member suspended the drug for 2 days for personal reasons, causing children re-admitted to the hospital for status epilepticus. There were 10 cases of psychological behavior abnormalities, and the necessary psychological counseling was provided and their families on a regular basis to inform the family that the rehabilitation process is a long-term process. At present, there are no obvious abnormal behaviors in these children. 13 cases of patients all skin pigmentation spots were reduced after applying rapamycin ointment through the skin. Conclusions Tuberous sclerosis combined with epilepsy involves multiple organ systems with varying degrees of severity, so standard monitoring and management of the disease is necessary to reduce morbidity and mortality.
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