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Sleep Characteristics of Children and Youth with Cerebral Palsy. 脑瘫儿童和青少年的睡眠特征
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-10-13 DOI: 10.1177/08830738241285074
Hangsel Sanguino, Laura Brunton, Elizabeth G Condliffe, Daniel C Kopala-Sibley, Melanie E Noel, Sandra J Mish, Carly A McMorris

Background: Children with cerebral palsy are considered to be a population at risk for the occurrence of sleep difficulties. However, existing literature has been limited by subjective measures of sleep and has failed to examine contributing factors. Methods: Forty-five youth with cerebral palsy participated. Both youth and caregivers completed sleep-related questionnaires, while youth completed daily actigraphy for objective sleep assessments. Results: Sleep patterns, including sleep duration, wake after sleep onset, and sleep efficiency, are generally aligned with existing sleep recommendations. However, the number of awakenings was significantly higher in youth with cerebral palsy compared to these recommendations. Most youth experienced poor sleep quality, and approximately a quarter experienced insomnia. Being a boy and having a preexisting mental health diagnosis was associated with poor sleep quality and greater insomnia symptoms. Conclusions: Most youth with cerebral palsy experience a range of sleep difficulties. This study provides new information on sleep patterns in youth with cerebral palsy, highlighting the importance of addressing sleep issues in this population to improve their well-being and ultimately limit the negative impacts on overall health and quality of life.

背景:脑瘫儿童被认为是有发生睡眠障碍风险的人群。然而,现有的文献受到睡眠主观测量方法的限制,也没有对诱发因素进行研究。研究方法45名患有脑瘫的青少年参加了此次调查。青少年和照护者都填写了与睡眠相关的问卷,同时青少年每天都完成了客观睡眠评估的动图测量。评估结果睡眠模式,包括睡眠时间、入睡后醒来次数和睡眠效率,总体上符合现有的睡眠建议。然而,与这些建议相比,脑瘫青少年的觉醒次数明显偏高。大多数青少年的睡眠质量较差,约有四分之一的青少年经历过失眠。男孩和已有精神健康诊断与睡眠质量差和失眠症状严重有关。结论大多数患有脑瘫的青少年都会遇到一系列睡眠困难。这项研究提供了有关脑瘫青少年睡眠模式的新信息,强调了解决这类人群睡眠问题的重要性,以改善他们的健康状况,并最终限制其对整体健康和生活质量的负面影响。
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引用次数: 0
Telemedicine in Pediatric Neurology: A Survey of Patient and Provider Experience. 儿科神经学远程医疗:患者和医疗服务提供者体验调查。
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-11-14 DOI: 10.1177/08830738241287243
Lauren Strasser, Lamia Hayawi, Richard J Webster, Sunita Venkateswaran, Katherine Muir

Background: Over recent years there has been a shift in clinical practice to support care delivery via telemedicine. This study aims to highlight the patient and provider experience of telemedicine over 2.5 years within a Canadian Pediatric Neurology clinic.

Method: A REDCap survey was sent to all patients/parents and providers with a telemedicine appointment between March 2020 and September 2022.

Results: Seven providers and 272 patients responded. Ninety-one percent of patients and 100% of providers were satisfied with telemedicine. Ninety percent of patients and 100% of providers found telemedicine more convenient. Eighty-seven percent of patients and 100% of providers were interested in future telemedicine appointments. Main challenges were with performing a physical examination and technological issues.

Conclusion: Our survey shows that the majority of patients and providers had highly positive experiences with telemedicine and were interested in continuing care via telemedicine. This study supports incorporating telemedicine into future pediatric neurology practice.

背景:近年来,临床实践已转向支持通过远程医疗提供护理服务。本研究旨在强调加拿大儿科神经病学诊所 2.5 年来患者和医疗服务提供者对远程医疗的体验:方法:向 2020 年 3 月至 2022 年 9 月期间预约远程医疗的所有患者/家长和医疗服务提供者发送 REDCap 调查问卷:结果:7 名医疗服务提供者和 272 名患者做出了回应。91%的患者和 100% 的医疗服务提供者对远程医疗表示满意。90%的患者和 100% 的医疗服务提供者认为远程医疗更方便。87%的患者和 100% 的医疗服务提供者对未来的远程医疗预约感兴趣。主要挑战是进行身体检查和技术问题:我们的调查显示,大多数患者和医疗服务提供者对远程医疗有非常积极的体验,并对通过远程医疗继续提供医疗服务感兴趣。这项研究支持将远程医疗纳入未来的儿科神经学实践中。
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引用次数: 0
Laser Interstitial Thermal Therapy for the Treatment of Mesial Temporal Lobe Epilepsy in Children.
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-31 DOI: 10.1177/08830738241312262
Aditi M Trivedi, Maria A Montenegro, David Gonda, Olivia Kim-McManus, Neggy Rismanchi, Aliya Frederick, Natalie Guido-Estrada, Anuja Jindal, Shifteh Sattar

Objective: Few studies have explored the efficacy of laser interstitial thermal therapy in pediatric epilepsy surgery. This study aims to evaluate seizure-free outcomes in children and adolescents with mesial temporal lobe epilepsy who underwent laser interstitial thermal therapy.

Methods: This was a retrospective cohort study performed at a level 4 epilepsy center. All patients had comprehensive presurgical epilepsy evaluations with a consensus treatment decision made by a multidisciplinary team. Brain magnetic resonance imaging (MRI) data were used to determine lesional vs nonlesional groups. All laser interstitial thermal therapy procedures were performed using Visualase laser ablation systems by the neurosurgical team. Seizure-free outcomes were measured according to the Engel surgical outcome scale.

Results: This study included 19 patients (12 girls, 7 boys). Age of epilepsy onset ranged from 2 to 17 years (mean 9.9 years), and age at time of surgery ranged from 8 to 20 years (mean 15.1 years). Ten patients (52.5%) had signs of hippocampal sclerosis on MRI (lesional group), and 9 patients (47.5%) had a normal brain MRI (nonlesional group). Engel 1 score was achieved by 14 of 19 patients (73.5%): 9 of 10 patients (90%) in the lesional group and 5 of 9 patients (55.5%) in the nonlesional group. Younger age of seizure onset was a predictor of better postsurgical outcome, but no other outcome predictors could be established.

Conclusion: Laser interstitial thermal therapy is safe and effective for the treatment of drug-resistant mesial temporal lobe epilepsy in children, rendering more favorable seizure-free outcomes in pediatric patients with hippocampal atrophy than in those with nonlesional mesial temporal lobe epilepsy.

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引用次数: 0
Development of a Nomogram and Risk Grouping System for Predicting 1-Year Overall Survival of Patients With Atypical Teratoid/Rhabdoid Tumors. 开发用于预测非典型畸形/横纹肌瘤患者 1 年总生存期的提名图和风险分组系统
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-27 DOI: 10.1177/08830738241281393
Xu Kang, Yabing Zhou, Fangjie Shen, Jiaqi Feng, Yunkun Wang, Jie Ma, Qiang Qiang, Xiaoqiang Wang

Purpose: Atypical teratoid/rhabdoid tumor (AT/RT) is a kind of central nervous system malignant tumor in children. In this study, we aimed to develop a practically clinical nomogram and risk grouping system to predict 1-year overall survival for patients with atypical teratoid/rhabdoid tumor.

Methods: The nomogram was constructed based on the pediatric tumor registry of Xinhua Hospital affiliated to Shanghai Jiaotong University School of Medicine. Fifty-four information-integrated patients with atypical teratoid/rhabdoid tumor were included from the database. Cox regression analyses were used to select independent prognostic factors. Based on the fitted multivariate Cox regression model, a nomogram of 1-year overall survival for atypical teratoid/rhabdoid tumor patients was generated. Moreover, the nomogram was validated by assessing its discrimination and calibration.

Results: In these patients, age at diagnosis, the extent of tumor resection, radiotherapy, and chemotherapy were included in the multivariate Cox regression model. Based on this multivariate Cox regression model, a nomogram of 1-year overall survival for atypical teratoid/rhabdoid tumor patients was generated. The nomogram had good discrimination (the concordance index was 0.781) and calibration curves showed no deviation from reference lines. Decision curve analysis demonstrated this nomogram was useful for clinical practice. The risk grouping system was built based on nomogram-derived risk scores, which could classify patients into 3 risk groups. Compared with the low-risk group, the risk of 1-year death was significantly higher in the intermediate-risk group (hazard ratio = 1.42, 95%, confidence intervals = 0.49-4.11) and high-risk group (hazard ratio = 9.78, 95% confidence intervals = 3.53-27.1).

Conclusion: A nomogram and risk grouping system were built to predict for the 1-year overall survival of atypical teratoid/rhabdoid tumor patients. The nomogram could facilitate a personalized prognostic evaluation for atypical teratoid/rhabdoid tumor patients and help medical practitioners make better treatment.

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引用次数: 0
Williams-Beuren Syndrome and Epilepsy: A Retrospective Analysis of 589 Patients. Williams-Beuren综合征与癫痫:589例回顾性分析。
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-22 DOI: 10.1177/08830738241305659
Johanna Pohl, Harry Nuss, Almuth Caliebe, Angela Gosch, Elke Reutershahn, Rainer Pankau, Hiltrud Muhle

Although many reports have described the characteristics of Williams-Beuren syndrome, few specifically analyzed epilepsy in patients with Williams-Beuren syndrome. In this retrospective study, we map the prevalence, types, and prognosis of epileptic seizures in a large cohort of 589 patients with Williams-Beuren syndrome, as well as associations between deletions of the membrane-associated guanylate kinase inverted-2-gene (MAGI2 gene), which is associated with infantile spasms (IS), and epilepsy in patients with Williams-Beuren syndrome.Our findings indicate that the incidence of epilepsy in patients with Williams-Beuren syndrome is approximately 1.02% (6 in 589), and is thus not higher than the incidence in the general population (0.5%-1.0%). West syndrome emerged as the most common epileptic syndrome in patients with Williams-Beuren syndrome (4 of 6) and typically has a favorable prognosis. There was no genotype-phenotype correlation between MAGI2 deletions and West syndrome in this cohort.

虽然许多报道描述了Williams-Beuren综合征的特征,但很少有专门分析Williams-Beuren综合征患者癫痫的报道。在这项回顾性研究中,我们绘制了589例Williams-Beuren综合征患者癫痫发作的患病率、类型和预后图,以及与婴儿痉挛(is)相关的膜相关鸟苷酸激酶倒置2基因(MAGI2基因)缺失与Williams-Beuren综合征患者癫痫之间的关系。我们的研究结果表明,Williams-Beuren综合征患者的癫痫发病率约为1.02%(6 / 589),因此不高于一般人群的发病率(0.5%-1.0%)。West综合征是Williams-Beuren综合征患者中最常见的癫痫综合征(6例中有4例),通常预后良好。在该队列中,MAGI2缺失与West综合征之间没有基因型-表型相关性。
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引用次数: 0
Parental Perceptions of School Experiences for Children With Epilepsy. 家长对癫痫儿童学校经历的看法。
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-21 DOI: 10.1177/08830738241309133
Mary Kay Irwin, Anup D Patel, Hannah Palme', Daniel M Cohen, Christopher Jones, Daniel Skinner

Background: Given the centrality of school to the lives of the more than 450 000 US children living with epilepsy, their interface with schools related to medical and educational needs is critical. This qualitative study explores parental experiences with school systems for the care and education of their children with epilepsy. Methods: Two 90-minute focus groups were empaneled with a total of 11 caregivers of children with epilepsy. Facilitators, moderators, and recorders of each group performed semistructured interviews prompting discussion of families' experiences. Conversations were audio recorded, deidentified, transcribed, and coded. Results: Five central themes emerged: Lack of School Resources (46), Lack of School Support (36), Customized Educational Support Plans (32), Academic Impacts (24), and Positive School Support (22). Families demonstrated a lack of awareness of resources available for their children and reported using other families, advocacy groups, health teams, and others to help. Some participants felt burdened as their child's sole advocate through their educational journey, including educating staff on epilepsy care and fighting for individual educational plans or supplemental resources. Families described global adverse effects of their child's epilepsy on family function related to finances/work, relationships, and sibling depression/anxiety, as well as inconsistent staff education to support students with epilepsy and variable staffing. Conclusion: Families of children with epilepsy face barriers that inform potential areas of improvement within schools. Closer interface between the medical community and educational systems may bridge gaps to ease the burden on families of children with epilepsy.

背景:鉴于学校对45万多名美国癫痫患儿的生活至关重要,他们与学校在医疗和教育需求方面的联系至关重要。本定性研究探讨了父母在学校系统中对癫痫患儿的照顾和教育的经验。方法:选取两个90分钟的焦点小组,共11名癫痫患儿的护理人员。每个小组的主持人、主持人和记录者进行了半结构化的访谈,促进了对家庭经历的讨论。对话被录音、去识别、转录和编码。结果:出现了五个中心主题:缺乏学校资源(46),缺乏学校支持(36),定制教育支持计划(32),学术影响(24)和积极的学校支持(22)。家庭表现出对其子女可获得的资源缺乏认识,并报告求助于其他家庭、宣传团体、保健小组和其他方面的帮助。一些参与者在孩子的教育过程中感到负担沉重,因为他们是孩子的唯一倡导者,包括对工作人员进行癫痫护理教育,争取个人教育计划或补充资源。家庭描述了他们的孩子癫痫对家庭功能的总体不利影响,包括财务/工作、人际关系和兄弟姐妹抑郁/焦虑,以及不一致的工作人员教育,以支持癫痫学生和人员配置的变化。结论:癫痫儿童的家庭面临的障碍,告知潜在的改进领域在学校。医学界和教育系统之间更紧密的联系可以弥合差距,减轻癫痫儿童家庭的负担。
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引用次数: 0
Central Nervous System Involvement in Pediatric Juvenile Idiopathic Arthritis: A Case Report of Cerebellitis and Literature Review. 小儿特发性关节炎累及中枢神经系统:小脑炎1例报告并文献复习。
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-19 DOI: 10.1177/08830738241312437
Miraç Yıldırım, Mert Altıntaş, Fatma Pınar Tabanlı, Ömer Bektaş, Serap Teber

Autoimmune diseases are a heterogeneous group resulting from dysregulation or dysfunction of the immune system due to genetic predisposition and environmental triggers. It is common for these diseases to coexist. However, except for a single case secondary to varicella zoster virus infection, the association between juvenile idiopathic arthritis and acute cerebellitis has not been reported in the literature. A 9-year-old girl with juvenile idiopathic arthritis, initially presenting with symptoms of headache, nausea and vomiting, was diagnosed with diffuse bihemispheric acute cerebellitis by magnetic resonance imaging (MRI). Various tests were performed to determine the etiology of the disease. Infectious, metabolic, and autoimmune causes were excluded. This case report illustrates an ultra-rare association between juvenile idiopathic arthritis and acute cerebellitis, with a successful outcome following treatment and monitoring. There are 17 children, including our patient, who were followed with juvenile idiopathic arthritis and were found to have central nervous system disorders in the literature. Cerebral vasculitis and optic neuritis were the most commonly diagnosed neurologic disorders. Biologic agents have been implicated in some cases of optic neuritis and aseptic meningitis. Prompt treatment with corticosteroids and discontinuation of suspected biologic agents leads to favorable outcomes. This literature review highlights that early diagnosis and intervention can significantly improve outcomes.

自身免疫性疾病是由遗传易感性和环境因素引起的免疫系统失调或功能障碍引起的异质性疾病。这些疾病共存是很常见的。然而,除了一例继发于水痘带状疱疹病毒感染外,文献中尚未报道青少年特发性关节炎与急性小脑炎之间的关系。一名9岁女童患有幼年特发性关节炎,最初表现为头痛、恶心和呕吐,经磁共振成像(MRI)诊断为弥漫性双脑急性小脑炎。进行了各种试验以确定该疾病的病因。排除了感染性、代谢性和自身免疫性原因。本病例报告说明了一种极为罕见的青少年特发性关节炎和急性小脑炎之间的联系,在治疗和监测后取得了成功的结果。包括我们的患者在内,有17名儿童被随访为青少年特发性关节炎,并在文献中发现有中枢神经系统疾病。脑血管炎和视神经炎是最常见的神经系统疾病。一些视神经炎和无菌性脑膜炎病例涉及生物制剂。及时使用皮质类固醇治疗并停用可疑的生物制剂可导致良好的结果。本文献综述强调早期诊断和干预可以显著改善预后。
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引用次数: 0
Retrospective Study of the Efficacy of Biofeedback Therapy for Pediatric Persistent Posttraumatic Headache. 生物反馈疗法治疗儿童持续性创伤后头痛疗效的回顾性研究。
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-17 DOI: 10.1177/08830738241312942
Anisha C Schwarz, Cora C Breuner, Heidi K Blume

Background: Posttraumatic headache is common in pediatrics. Studies have examined treatment of postconcussion symptoms, but few target posttraumatic headache. Biofeedback therapy has been studied in children and teens with primary headaches, but not posttraumatic headache. Our goal was to examine the changes in posttraumatic headache associated with biofeedback therapy in pediatric patients.

Methods: This retrospective study included 74 children aged 10-18 years who received biofeedback therapy for posttraumatic headache. "Positive response" to biofeedback therapy was defined as ≥50% reduction in headache days per week, or 3-point drop in pain rating between the first and last biofeedback therapy visits. Patient characteristics were analyzed using logistic regression to identify factors associated with response.

Results: In our cohort, 42% of all patients with posttraumatic headache had a positive response to biofeedback therapy. Thirty-six percent experienced ≥50% decrease in headache frequency, 13% had a ≥3-point decrease in headache severity and 8% reported both changes. For those with daily headaches, 36% had a positive response to biofeedback therapy. School absences, selective serotonin reuptake inhibitor or prescription preventive medication use were associated with nonresponse.

Conclusions: Biofeedback therapy is a reasonable treatment to consider to manage pediatric posttraumatic headache because more than 40% of our cohort had a beneficial response and biofeedback therapy has few adverse effects.

背景:创伤后头痛在儿科很常见。研究已经检查了脑震荡后症状的治疗,但很少针对创伤后头痛。生物反馈疗法已经在儿童和青少年原发性头痛中进行了研究,但没有研究创伤后头痛。我们的目的是研究儿科患者创伤后头痛与生物反馈治疗相关的变化。方法:回顾性研究74例10-18岁儿童,接受创伤后头痛生物反馈治疗。生物反馈治疗的“积极反应”定义为每周头痛天数减少≥50%,或首次和最后一次生物反馈治疗就诊之间疼痛评分下降3分。使用逻辑回归分析患者特征以确定与反应相关的因素。结果:在我们的队列中,42%的创伤后头痛患者对生物反馈疗法有积极反应。36%的患者头痛频率降低≥50%,13%的患者头痛严重程度降低≥3点,8%的患者报告两种变化。对于那些每天都头痛的人,36%的人对生物反馈疗法有积极反应。缺课、选择性血清素再摄取抑制剂或处方预防性药物的使用与无反应相关。结论:生物反馈疗法是治疗儿童创伤后头痛的一种合理的治疗方法,因为我们的队列中超过40%的患者有有益的反应,生物反馈疗法几乎没有不良反应。
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引用次数: 0
Association Between Social Determinants of Health and Concussion Among High School Students in the United States. 美国高中生健康的社会决定因素与脑震荡之间的关系。
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-17 DOI: 10.1177/08830738241304867
Nathan E Cook, Charles E Gaudet, Grant L Iverson

We examined the association between social determinants of health and the likelihood of sustaining a concussion among adolescents. Participants in this cross-sectional study were 7164 high school students who completed the 2021 Adolescent Behaviors and Experiences Survey (52.7% girls; mean age = 16.0 years, SD = 1.2; age range 12-18 years). Logistic regression was used to determine which social determinants of health variables were associated with a self-reported history of concussion from playing a sport or being physically active over the past year. One in 10 adolescents (n = 716; 10.0% total; 11.8% of boys, 8.3% of girls) reported sustaining a concussion during the past year. Seven of 10 adolescents (70.3%) reported experiencing at least 1 of 8 negative social determinants of health. A multivariable logistic regression was statistically significant (P < .001), indicating that the negative social determinants of health were associated with having sustained a concussion during the past year; the model explained 12.5% (Nagelkerke R2) of the variance in concussion. Controlling for all other predictors, sports participation (odds ratio [OR] = 3.72, medium effect), housing instability (OR = 3.25, small-medium effect) and limited English language proficiency (OR = 3.05, small-medium effect) were the strongest independent predictors of sustaining concussion within the past year. Adolescents who lived in a neighborhood where there is violence (OR = 1.78, small effect), who were bullied (OR = 1.57, very small effect), and who experienced food insecurity (OR = 1.36, very small effect) were more likely to have sustained a concussion. Research is needed to understand the nature of these determinant-injury associations. Whether social determinants of health are associated with specific treatment and rehabilitation needs, and time to recover following concussion, should be examined with prospective studies.

我们研究了青少年健康的社会决定因素与持续脑震荡的可能性之间的关系。这项横断面研究的参与者是7164名完成了2021年青少年行为和经历调查的高中生(52.7%的女孩;平均年龄= 16.0岁,SD = 1.2;年龄介乎12至18岁)。使用逻辑回归来确定哪些健康变量的社会决定因素与自我报告的过去一年中因参加体育运动或身体活动而产生的脑震荡史有关。十分之一的青少年(n = 716;总数10.0%;11.8%的男孩(8.3%的女孩)报告在过去一年中遭受过脑震荡。10名青少年中有7名(70.3%)报告至少经历了8项负面健康社会决定因素中的1项。经多变量logistic回归分析,脑震荡患者的差异有统计学意义(P R2)。控制所有其他预测因素后,运动参与(比值比[OR] = 3.72,中等效应)、住房不稳定性(OR = 3.25,中小型效应)和有限的英语语言能力(OR = 3.05,中小型效应)是过去一年内持续脑震荡的最强独立预测因素。生活在暴力社区的青少年(OR = 1.78,影响小)、被欺负的青少年(OR = 1.57,影响很小)和经历过食品不安全的青少年(OR = 1.36,影响很小)更有可能遭受脑震荡。需要进行研究以了解这些决定性损伤关联的性质。健康的社会决定因素是否与特定的治疗和康复需求以及脑震荡后的恢复时间有关,应该通过前瞻性研究进行检查。
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引用次数: 0
Coffin-Lowry Syndrome: A Case of Clinical Convergence for Psychology, Neuropsychology, Psychiatry, Genetics, and Neurology. 棺材-劳瑞综合征:心理学、神经心理学、精神病学、遗传学和神经病学的临床融合案例。
IF 2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2025-01-17 DOI: 10.1177/08830738241308605
Ji-Sun Kim, Shawen Ilaria, Jasdeep Hundal, Vikram Bhise

We present the case of a 15-year-old girl with new-onset psychosis and abnormal white matter activity on neuroimaging, engaging multidisciplinary care between genetics, neurology, psychiatry, and neuropsychology. She functioned well in mainstream education despite below average intellectual functioning. Physical examination findings enabled the diagnosis, and patient improved with joint psychological and behavioral outpatient services.

我们报告一名15岁女孩的病例,她患有新发精神病和神经影像学上的异常白质活动,在遗传学、神经病学、精神病学和神经心理学之间进行多学科治疗。她在主流教育中表现良好,尽管智力低于平均水平。体格检查结果有助于诊断,患者通过联合心理和行为门诊服务得到改善。
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引用次数: 0
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Journal of Child Neurology
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