目的：探讨线上线下综合康复治疗对全面性发育迟缓（global developmental delay，GDD）儿童 的康复干预有效性；建构全面性发育迟缓儿童线上线下混合式综合康复治疗的模式。方法：选取在 南京市儿童医院康复医学科治疗的全面性发育迟缓儿童50例，接受6个月线上线下综合康复训练，线 下治疗包括家长培训、家庭康复指导、感觉统合治疗、物理治疗（PT）、作业治疗（OT）、言语治 疗（ST）、中医针灸推拿疗法、经颅磁刺激（TMS）等综合康复治疗；线上治疗则采取治疗师线上 指导、家长线下操作的居家康复训练策略。线下治疗方案为：每天治疗1次，每周治疗5 d，疗程1个 月；线上治疗方案为：治疗师线上指导1次/周，疗程1个月。线上线下治疗交替进行。于介入前及介 入2、4、6个月，分别采用粗大运动功能测试量表（GMFM）、Gesell婴幼儿发展量表进行评估，评价 线上线下综合康复治疗对GDD儿童的康复效果。结果：线上线下综合康复治疗介入后，GDD儿童 GMFM、Gesell婴幼儿发展量表分值显著提高，差异有统计学意义（P ＜0.05）。结论：线上线下综合 康复治疗能进一步改善GDD儿童发育水平，对改善患儿运动能力及社会适应能力方面具有重要意义。

Objective:To explore the understanding among medical rehabilitation staff about pain in children with cerebral palsy.Methods:A questionnaire was developed by referring to the literature on children′s rehabilitation and pain. It was used to survey 856 rehabilitation personnel including 110 doctors, 313 therapists and 433 nurses from 12 hospitals in 10 provinces using an online platform at overall rate of correct responses was (67.89±13.35) %. Doctors and therapists scored about 70% correct and nurses about 65%. There were significant differences in pain knowledge related with educational background, age, work experience and position. Gender, professional title and parent status were not significant predictors. About 93% of those surveyed thought it was necessary to provide pain-related training, and 95% were willing to receive such training.Conclusions:There is a lack of knowledge about pain in children with cerebral palsy among rehabilitation medical staff. It is urgent to provide more related training and guidance to those in clinical practice.

神经元蜡样质脂褐质沉积症(neuronal ceroid lipofuscinosis,NCL)是一种罕见的、预后普遍较差的遗传性神经退行性疾病,病理表现为在神经细胞和其他细胞内有黄色自发荧光特性的脂色素沉积,导致以大脑皮质和视网膜为主的神经细胞脱失[1-3].MFSD8基因突变导致的常染色体隐性遗传性NCL7型(CLN7)多于儿童期发病,目前临床上没有有效的治疗方案[1-3].迄今为止,国内已有的CLN7病例报道较少,现就我院发现1例MFSD8致病性复合杂合突变导致的儿童CLN7病例特征及康复进展跟踪报告如下:1资料与方法1.1临床资料

Objective:To observe the effect of acupuncture and tuina combined with neurodevelopment therapy on gross motor function of children with spastic cerebral palsy.Method:According to the case inclusion criteria,60 children with spastic cerebral palsy were included and divided into control group and treatment group,30 cases in each group.The control group was only given neurodevelopment therapy,the treatment group was given acupuncture and tuina on the basis of the neurodevelopment therapy.The two groups were both treated for 8 consecutive weeks.Result:After 8 weeks of treatment,the total score of gross motor function measurement of the both groups was significant higher than that of their baseline evaluation(P0.001),and the change of total score of gross motor function measurement in treatment group was significant higher than that in control group(P0.001).Conclusion:Acupuncture and tuina combined with neurodevelopment therapy can obviously improve the gross motor function of children with spastic cerebral palsy,and its efficacy were higher than neurodevelopment therapy.

目的:探讨早期干预过程中中枢性协调障碍(ZKS)患儿家长心理问题。方法:ZKS患儿早期干预治疗中,注重患儿家长的心理问题,通过心理疏导,充分鼓励家长,使家长重新找到平衡点,观察治疗效果。结论:充分鼓励能够最大程度的调动家长治疗积极性,达到早期干预更好的效果。