ISSN 2097-6046（网络）
ISSN 2096-7446（印刷）
CN 10-1655/R
主管：中国科学技术协会
主办：中华护理学会
中华急危重症护理杂志

中华急危重症护理杂志 ›› 2026, Vol. 7 ›› Issue (4): 450-452.doi: 10.3761/j.issn.2096-7446.2026.04.010

• 急症护理研究 • 上一篇    下一篇

先天性无痛无汗症患儿合并脓毒症并发惊厥持续状态的护理

徐峰1(), 章毅1, 王秀玲1, 潘丽丽1, 诸纪华2,*()   

  1. 1 浙江大学医学院附属儿童医院/儿童少年健康与疾病国家临床医学研究中心神经内科 杭州市 310052
    2 浙江大学医学院附属儿童医院/儿童少年健康与疾病国家临床医学研究中心护理部 杭州市 310052
  • 收稿日期:2025-10-21 出版日期:2026-04-10 发布日期:2026-04-02
  • 通讯作者: 诸纪华 E-mail:6513308@zju.edu.cn;jihuazhu@zju.edu.cn
  • 作者简介:徐峰：女，本科（硕士在读），主管护师，E-mail：6513308@zju.edu.cn
  • 基金资助:
    浙江省教育厅一般科研项目(Y202456993)

Nursing care for a child with congenital insensitivity to pain and anhidrosis complicated by sepsis and status epilepticus

XU Feng1(), ZHANG Yi1, WANG Xiuling1, PAN Lili1, ZHU Jihua2,*()   

  1. 1 Department of Neurology, Children’s Hospital，Zhejiang University School of Medicine，National Clinical Research Center for Children and Adolescents’ Health and Diseases， Hangzhou 310052， China
    2 Department of Nursing， Chil-dren’s Hospital，Zhejiang University School of Medicine，National Clinical Research Center for Children and Adoles-cents’ Health and Diseases， Hangzhou 310052， China
  • Received:2025-10-21 Online:2026-04-10 Published:2026-04-02
  • Contact: ZHU Jihua E-mail:6513308@zju.edu.cn;jihuazhu@zju.edu.cn
  • Supported by:
    General Research Projects of Zhejiang Provincial Department of Education(Y202456993)

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摘要：

总结1例无痛无汗症合并脓毒症伴惊厥持续状态患儿的护理体会。护理要点：基于菲尼克斯脓毒症评分对病情进行动态评估，早期识别脓毒症高风险状态并警惕脓毒性休克；在多学科团队协作模式下，开展惊厥多模态监测与急救处置；针对无汗所致体温调节障碍，强化体温精细化管理，前移高热风险防控；针对痛觉缺失问题，加强自伤行为防护，降低感染及骨折风险；出院前运用照顾图谱指导家庭护理。经过14 d积极治疗与精心护理，患儿病情稳定出院。

关键词: 无痛无汗症, 脓毒症, 惊厥, 儿童, 危重病护理

Abstract:

To summarize the nursing experience for a child with congenital insensitivity to pain with anhidrosis complicated by sepsis and status epilepticus. Key interventions included dynamic condition assessment using the Phoenix Sepsis Score and early identification of sepsis high-risk state and vigilance against septic shock，multidisciplinary collaborative convulsion monitoring and emergency care，refined temperature management for anhidrosis-related dysregulation and advancing high fever risk prevention，addressing the issue of pain sensation loss by enhancing self-harm behavior protection to reduce infection and fracture risks，and family-centered discharge care guided by a care map. The child achieved stable condition and was discharged after 14 days of standardized intervention.

Key words: Congenital Insensitivity to Pain with Anhidrosis, Sepsis, Convulsions, Child, Critical Care Nursing