Abstract:

This study summarizes the nursing experience for a pediatric patient with severe juvenile dermatomyositis complicated by hemophagocytic syndrome and positive anti-MDA-5 antibodies. Key nursing points are as follows. The acute attack period：closely monitoring body temperature and strengthening infection prevention and control；strengthening expectoration and optimizing respiratory tract management；carrying out passive training to prevent muscle contracture and venous thrombosis；providing diverse psychological care to relieve negative emotions. The hormone shock therapy period：the skin condition should be dynamically monitored to maintain its integrity. The plasma adsorption treatment period：catheter maintenance should be carried out to ensure the safety of the pipeline. The stable recovery period：engaging in various forms of active exercises to promote muscle strength recovery；taking multiple measures to reduce adverse reactions caused by combined medication；attaching importance to daily skin management and strengthening health education. The patient improved and was discharged after a 49-day hospitalization.

Key words: Anti-MDA-5 Antibody-Positive, Severe Dermatomyositis, Hemophagocytic Syndrome, Severe Pneu-monia, Adolescent, Nursing Care

摘要：

总结1例抗黑素瘤分化相关基因5抗体阳性重症幼年型皮肌炎并发噬血细胞综合征青少年患者的护理经验，护理要点如下。急性发作期：密切监测体温，加强感染防控；强化排痰，优化呼吸道管理；进行被动训练，防止肌肉挛缩和静脉血栓；给予多样化的心理护理，缓解负性情绪。激素冲击治疗期动态监测皮肤状况，维护皮肤完整性。血浆吸附治疗期进行置管维护，确保管路安全。稳定康复期：开展多种形式的主动运动，促进肌力恢复；采取多种措施，减少联合用药导致的不良反应；重视日常皮肤管理，强化健康宣教。患者于住院49 d后好转出院。

关键词: 抗MDA-5抗体阳性, 重症皮肌炎, 噬血细胞综合征, 重症肺炎, 青少年, 护理