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Journal of Pediatric Epilepsy最新文献

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Ethical Issue as the Limiting Factor for Epilepsy Surgery 伦理问题是癫痫手术的限制因素
IF 0.2 Pub Date : 2020-08-20 DOI: 10.1055/s-0040-1714355
S. Gedela, C. Korff
Abstract Epilepsy is one of the most common neurological disorders with almost one-third of these patients becoming intractable to medical treatments. For some of these patients, epilepsy surgery could be the best option. There are lot of disparities in caring of the epilepsy patients. There are multiple limitations in offering epilepsy surgery for the medically intractable epilepsy patients, resulting in almost 19 years gap from the diagnosis of intractable epilepsy to epilepsy surgery. These limitations range from patient or parental fear to lack of available resources. Sometimes we face an ethical issue being the limitation from doing the right thing for the patient. We want to share our experience with one of our patients with symptomatic medically intractable focal epilepsy from Rasmussen’s encephalitis who could not get the epilepsy surgery treatment because of an ethical issue.
癫痫是最常见的神经系统疾病之一,近三分之一的癫痫患者难以治疗。对其中一些患者来说,癫痫手术可能是最好的选择。在对癫痫患者的护理方面存在着很大的差异。对医学上难治性癫痫患者进行癫痫手术治疗存在诸多局限性,导致从难治性癫痫的诊断到癫痫手术治疗之间存在近19年的差距。这些限制包括从患者或家长的恐惧到缺乏可用资源。有时我们会面临伦理问题,不能为病人做正确的事。我们想与一位患有拉斯穆森脑炎的症状性难治性局灶性癫痫的患者分享我们的经验,他因为伦理问题而无法接受癫痫手术治疗。
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引用次数: 0
An Overview of Anxiety Disorders and Depression in Children with Epilepsy: A Literature Review 癫痫儿童焦虑障碍和抑郁的综述:文献综述
IF 0.2 Pub Date : 2020-08-14 DOI: 10.1055/s-0040-1715566
O. Gökçen, M. Turgut
Abstract Comorbid psychiatric disorders in children with epilepsy have long been a subject of medical literature. Many studies conducted by pediatric neurologists, neurosurgeons, psychiatrists, and psychologists have revealed that psychiatric disorders, including anxiety disorders and depression, are frequently seen in children and adolescents with epilepsy. Due to various etiologies behind epilepsy, causes, manifestation, and treatment of anxiety and depression all have unique aspects. We think there are multiple reasons behind anxiety disorders and depression in children with epilepsy, varying from the physiological nature of the epilepsy itself to the environmental factors such as family, parenting, and social status. In this article, we aim to review the causes, risk factors, and management of anxiety disorders and depression in children with epilepsy.
癫痫患儿的共病性精神障碍一直是医学文献研究的课题。由儿科神经学家、神经外科医生、精神科医生和心理学家进行的许多研究表明,精神疾病,包括焦虑症和抑郁症,在患有癫痫的儿童和青少年中很常见。由于癫痫背后的各种病因,原因,表现和治疗焦虑和抑郁都有其独特的方面。我们认为癫痫患儿的焦虑和抑郁背后有多种原因,从癫痫本身的生理性质到环境因素,如家庭、父母和社会地位。在这篇文章中,我们的目的是回顾癫痫儿童焦虑障碍和抑郁的原因、危险因素和管理。
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引用次数: 1
Practical Ethical Approaches for Common Issues in Pediatric Epilepsy 儿科癫痫常见问题的实用伦理方法
IF 0.2 Pub Date : 2020-08-13 DOI: 10.1055/s-0040-1715563
C. Lancaster
Abstract The aim of this commentary is to provide clinicians with the tools needed (or, at least, knowledge of where to find them) to navigate the often-turbulent seas of medical ethics. The cases described and questions asked in this issue are not only relevant to pediatric epilepsy but also typical of quandaries faced frequently by health care professionals (HCPs). By examining these cases and extrapolating the ethical questions raised, the clinician will find that there are several ethical approaches that can be taken and may lead to a variety of ways forward. However, by employing the ideas highlighted in this commentary, it is my hope that HCPs will be able to identify these various points of view, evaluate their options, and act in ways that are ethically justifiable.
本评论的目的是为临床医生提供所需的工具(或者,至少,在哪里可以找到它们的知识),以导航经常动荡的医学伦理海洋。本问题中所描述的病例和提出的问题不仅与儿童癫痫有关,而且也是卫生保健专业人员(HCPs)经常面临的典型困境。通过检查这些病例并推断所提出的伦理问题,临床医生会发现有几种可以采用的伦理方法,并可能导致各种各样的前进道路。然而,通过采用这篇评论中强调的观点,我希望医护人员能够识别这些不同的观点,评估他们的选择,并以道德上合理的方式行事。
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引用次数: 0
Ethical Issues in Pediatric Epilepsy 儿童癫痫的伦理问题
IF 0.2 Pub Date : 2020-08-13 DOI: 10.1055/s-0040-1715565
E. Posner, C. Lancaster
Medicine frequently comes up against ethical dilemmas, for which there are no clear “right” answers. This special issue aims to highlight some of those occurring in pediatric epileptology and raise awareness of potential frameworks to aid clinicians. What readers may recognize through the papers presented is that despite the contributors coming from a wide geographical range, there are recurrent themes that appear throughout 21-century clinical practice. A child who may benefit from surgical interventionmaybe living in theUnited States, Spain, Italy, Romania, and so on, and similar discussion may be required involving health care professionals (HCPs), the patient, and patient advocates. Similar questions arise regardless of country: How much weight should be given to patients’ requests? Who ultimately decides on current treatment? If the patient cannot make a contribution, who should be their representative? Howdowebalance the “pros and cons” of a particular therapeutic regime? Is it ethical to try pediatric patients on drugs that have not been licensed for use in children? Despite the cultural pluralities in the countries represented, the same dilemmas emerge. This suggests that there is a need for an overarching understanding of medical ethics in a way that can be practically employed by the HCPs wherever they work. It would be nice to have a flowchart telling HCPs which “morally correct” action should be taken in each situation, but this unfortunately is not possible.What is possible, however, is that practitioners are equipped with knowledge about moral theories and ethical approaches that enable them to make ethically sound (and justifiable) decisions, which take into account cultural, social, religious, and legal pluralities. These types of considerations are vital for developing ethically justifiable decisions. It is by learning various approaches to medical ethics that the practitioner can navigate their field. The practice of medicine was, at least initially, considered to be an art. Although science has helped medicine develop therapies, diagnostic tests, and classification of diseases (for example), the importance of medical ethics demonstrates that the clinician still needs an ability to practice their art. The hypothetical questions listed above are unsurprisingly present in the papers included in this issue. There are also particular themes that emerge (again, regardless of geographical region), showing that there is a need for HCPs to be fully ethically equipped for their role in pediatric epileptology. A quick check of medicine legislation in many countries highlights the separation of licensing drugs for pediatric use and adult use. In this issue, Rose et al’s contribution on clinical trials and use of various epilepsy treatments in pediatric patients go some way to examining whether this is simply a regulatory issue or whether children may be thought of as “little adults”with regard to pharmacokinetics and pharmacodynamics, aski
医学经常遇到道德困境,对此没有明确的“正确”答案。本期特刊旨在强调儿童癫痫学中发生的一些问题,并提高对潜在框架的认识,以帮助临床医生。通过这些论文,读者可能会认识到,尽管贡献者来自广泛的地理范围,但在21世纪的临床实践中出现了反复出现的主题。可能受益于手术干预的儿童可能生活在美国、西班牙、意大利、罗马尼亚等地,类似的讨论可能需要涉及卫生保健专业人员(HCPs)、患者和患者倡导者。无论在哪个国家,都会出现类似的问题:对患者的要求应给予多大的重视?谁最终决定当前的治疗方法?如果病人不能供款,谁应该成为他们的代表?如何平衡特定治疗方案的“利弊”?让儿科患者尝试使用未经许可用于儿童的药物是否合乎道德?尽管所代表的国家文化多元,但同样的困境也出现了。这表明,有必要对医学伦理有一个总体的理解,以便医务人员无论在哪里工作都能实际运用。如果有一个流程图告诉医护人员在每种情况下应该采取哪些“道德正确”的行动,那就太好了,但不幸的是,这是不可能的。然而,有可能的是,从业者具备道德理论和伦理方法的知识,使他们能够做出合乎道德的(和合理的)决定,这些决定考虑到文化、社会、宗教和法律的多元性。这些类型的考虑对于制定合乎道德的决策至关重要。通过学习医学伦理的各种方法,从业者可以驾驭他们的领域。至少在最初,行医被认为是一门艺术。尽管科学帮助医学发展了治疗方法、诊断测试和疾病分类(例如),但医学伦理的重要性表明,临床医生仍然需要有能力实践他们的艺术。上面列出的假设性问题毫不奇怪地出现在本期的论文中。此外,还出现了一些特别的主题(同样,无论地理区域如何),表明有必要为卫生专业人员在儿童癫痫学中的作用提供充分的道德装备。对许多国家的药品立法进行快速检查就会发现,儿童用药和成人用药的许可是分开的。在本期中,Rose等人对临床试验和各种癫痫治疗在儿科患者中的应用的贡献在一定程度上探讨了这是否仅仅是一个监管问题,或者在药代动力学和药效学方面,儿童是否可以被认为是“小大人”,并询问是否没有必要对某些治疗进行儿科临床试验。Rose等人认为,“儿童”的法律意义和生理意义之间的冲突,使癫痫儿童的医疗处于某种不稳定的位置,在药理学和立法之间取得平衡。继续这个主题,温坦提供了有关德拉韦综合征的例子。斯立哌醇与丙戊酸钠和氯巴唑仑一起被证明对这种情况有效。然而,Diacomit(联合王国许可的施曲妥醇药物)的产品特性摘要指出,必须仔细监测其在幼儿中的使用,并且关于在12个月以下婴儿中使用施曲妥醇的数据有限。因此,临床医生在为非常年幼的儿童开处方时应谨慎行事。在文章的最后,温坦强调,这些孩子的父母必须随时了解可能的新治疗方法、疗效和不良事件。知情同意长期以来一直是医学伦理的基石,在指导家长和患者时至关重要。正如温坦指出的那样,医护人员意识到,对减轻症状的绝望可能会严重影响做出决定的自主权。
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引用次数: 0
At What Point Should We Discontinue Treatment in Super-Refractory Status Epilepticus? 超难治性癫痫持续状态在什么时候应该停止治疗?
IF 0.2 Pub Date : 2020-07-29 DOI: 10.1055/s-0040-1714389
A. Datta
Abstract This case report portrays the case of a child with super-refractory status epilepticus. The seizures were secondary to febrile infection-related epilepsy syndrome and the child required multiple anticonvulsants and eventually anesthetic infusions for several weeks. During the treatment, an ethical dilemma arose and was discussed by neurologists, intensivists, and family members.
摘要:本病例报告描述了一名患有超难治性癫痫持续状态的儿童。癫痫发作继发于发热性感染相关癫痫综合征,患儿需要服用多种抗惊厥药物,并最终持续数周注射麻醉剂。在治疗过程中,出现了一个道德困境,神经学家、重症监护医师和家庭成员对此进行了讨论。
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引用次数: 1
Quality of Life Dilemmas in Pediatric Patients with Epilepsy Residing in Long-Term Care Facilities 长期护理机构儿童癫痫患者的生活质量困境
IF 0.2 Pub Date : 2020-07-22 DOI: 10.1055/s-0040-1714356
L. Tran
Abstract Children with chronic care or complex medical needs, such as epilepsy, depend on advocates to ensure their safety and well-being, a role typically filled by parents or extended family. Close participation to provide vital history and details is quintessential to help guide appropriate management decisions to ensure optimal neurodevelopmental outcome. However, when these vulnerable children are placed in the foster care system, their need for an advocate becomes even more paramount. Unfortunately, this can be lacking and can lead to a breakdown in their medical care. Their complex medical conditions often can be intimidating to most potential foster families and may result in placement in long-term care facilities. This, in turn, presents additional obstacles that can hinder optimal care such as lack of consistent, dedicated caretakers. This void not only impacts their outcome and medical care but also leads to excessive use of limited healthcare resources as well as unwanted adverse reactions that can be prevented if a reliable source of history is available. As a result, there is a need for dedicated resources to help provide devoted advocates for these vulnerable children.
患有慢性护理或复杂医疗需求(如癫痫)的儿童依靠倡导者来确保他们的安全和福祉,这一角色通常由父母或大家庭承担。密切参与提供重要的历史和细节是帮助指导适当的管理决策,以确保最佳的神经发育结果的精髓。然而,当这些弱势儿童被安置在寄养系统中时,他们对倡导者的需求变得更加重要。不幸的是,这可能是缺乏的,并可能导致他们的医疗崩溃。他们复杂的医疗状况往往会对大多数潜在的寄养家庭造成威胁,并可能导致他们被安置在长期护理机构。这反过来又带来了额外的障碍,如缺乏一致的、专门的护理人员,可能会阻碍最佳护理。这种空白不仅会影响他们的治疗结果和医疗护理,还会导致过度使用有限的医疗资源,以及如果有可靠的病史来源就可以预防的不必要的不良反应。因此,需要专门的资源来帮助为这些弱势儿童提供专门的倡导者。
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引用次数: 0
Repetitive Arm and Hand Movements (Complex Motor Stereotypy) in a Six-Year Boy 六岁男孩重复性手臂和手部动作(复杂运动刻板印象)
IF 0.2 Pub Date : 2020-07-21 DOI: 10.1055/s-0040-1712162
R. Koul, R. Hora
Abstract Abnormal movements are not uncommon in children. Most of these abnormal movements can be defined by the available criteria. Abnormal movements are easily diagnosed in adults. Most of these abnormal movements are well categorized and diagnosed by the defined characteristics. Sometimes it is difficult to diagnose an unusual movement disorder in children, particularly if it is rare and there are no investigations to prove the diagnosis. Repetitive arm and hand movements (complex motor stereotypy) is one such disorder which is rare and difficult to diagnose unless seen before. In this case report, we described a 6-year-old boy with this disorder, in whom it took 6 years to diagnose.
异常运动在儿童中并不少见。大多数这些异常运动都可以用现有的标准来定义。成人的异常运动很容易被诊断出来。这些异常运动大多可以很好地分类并根据定义的特征进行诊断。有时很难诊断儿童的异常运动障碍,特别是如果它很罕见并且没有调查来证明诊断。重复的手臂和手部运动(复杂运动刻板印象)就是这样一种罕见且难以诊断的疾病,除非以前见过。在这个病例报告中,我们描述了一个患有这种疾病的6岁男孩,他花了6年的时间才诊断出来。
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引用次数: 0
Exploring the Role of Pediatric Neurology in Determinations of Futility, Identifying Vulnerability, and Participating in Shared Decision Making through Case-Based Analysis 通过案例分析,探索儿童神经病学在确定无效、识别脆弱性和参与共同决策中的作用
IF 0.2 Pub Date : 2020-07-20 DOI: 10.1055/s-0040-1714354
Julio Quezada, J. Lantos
Abstract It is not uncommon for pediatric neurologists to encounter ethical dilemmas in clinical practice. These dilemmas not only require an exploration of the basic bioethical principles, but also considering that neurological disease can have impact on a person's self-identity. Patients with neurological disease are particularly vulnerable and at risk of having long-term sequelae of their nervous system and their individual selves. These important considerations can then raise the question of futility of treatment in a setting of uncertainty of outcome. In these complex situations, a pediatric neurologist plays an important role in shared decision making with both families and multidisciplinary teams. In this paper, we explore case-based scenarios that serve to demonstrate the unique character of ethics in neurology and the role of pediatric neurologists in finding solutions that are in a patient's best interest, have a minimal chance of harm, respect a patient's autonomy, and are just and promote justice.
摘要小儿神经科医师在临床实践中遇到伦理困境并不罕见。这些困境不仅需要探索基本的生物伦理原则,还需要考虑到神经系统疾病可能对一个人的自我认同产生影响。患有神经系统疾病的患者尤其容易受到伤害,他们的神经系统和个人自我都有长期后遗症的风险。这些重要的考虑可能会在结果不确定的情况下提出治疗无效的问题。在这些复杂的情况下,儿科神经科医生在与家庭和多学科团队共同决策方面发挥着重要作用。在本文中,我们探讨了基于案例的场景,以展示神经病学伦理的独特特征,以及儿科神经学家在寻找符合患者最佳利益的解决方案方面的作用,伤害的可能性最小,尊重患者的自主权,公正和促进正义。
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引用次数: 0
Social and Economic Challenges to Implementing the Ketogenic Diet: A Case Series 实施生酮饮食的社会和经济挑战:一个案例系列
IF 0.2 Pub Date : 2020-07-15 DOI: 10.1055/s-0040-1713908
Sloan Lynch, Catherine N. Barry, L. Douglass
Abstract The ketogenic diet (KD) is a powerful therapeutic tool that can reduce seizure activity in patients with refractory epilepsy. However, dietary implementation can be difficult for patients and families due to the time and resource intensive nature of the diet. These challenges are particularly pronounced in economically disadvantaged or socially unstable patient populations. The first case of this series describes the successful implementation of KD in a low-income, homeless patient through the use of innovative KD recipes and access to social programs offered through Boston Medical Center. The second case illustrates the importance of consistent parental support to the success of KD and describes mechanisms used to improve familial support within a nonunified household. Collectively, these cases demonstrate ways by which health care providers can make this powerful dietary treatment accessible to low-resource patients.
生酮饮食(KD)是一种有效的治疗工具,可以减少难治性癫痫患者的癫痫发作活动。然而,由于饮食的时间和资源密集性,饮食的实施对患者和家属来说可能很困难。这些挑战在经济上处于不利地位或社会不稳定的患者群体中尤为明显。本系列的第一个案例描述了通过使用创新的KD食谱和波士顿医疗中心提供的社会项目,在一个低收入、无家可归的病人中成功实施KD。第二个案例说明了持续的父母支持对KD成功的重要性,并描述了在非统一家庭中用于改善家庭支持的机制。总的来说,这些案例表明,卫生保健提供者可以通过各种方式使这种强大的饮食治疗对资源不足的患者有效。
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引用次数: 0
Ethical, Social, and Economic Challenges in Managing a Child with Dravet Syndrome in a Developing Country 在一个发展中国家,管理患特拉韦特综合症儿童的伦理、社会和经济挑战
IF 0.2 Pub Date : 2020-07-15 DOI: 10.1055/s-0040-1714065
S. Gulati, R. Sinha, Priyanka Madaan
Abstract Epilepsy is a chronic neurological disorder with a significant impact on sociocultural and economic aspects. The management of epilepsy in low-middle income countries (LMICs) is influenced by many factors such as disease burden, poverty, educational status, the reflection of the disease as a social stigma, diverse religious beliefs, and treatment expense. Despite the improvement in educational and social parameters, the stigmatization of the disease is still evident in many LMICs. The associated comorbidities and neurodevelopmental disorders further add to the cost and stigmatization. The pediatric neurologists/epileptologists in LMICs are encountered by distinctive ethical, social, and economic dilemmas during the patient care and management of epilepsy. This article discusses the various ethical dilemmas in a child with Dravet syndrome in a developing country.
癫痫是一种慢性神经系统疾病,对社会文化和经济产生重大影响。中低收入国家的癫痫管理受到许多因素的影响,如疾病负担、贫困、教育状况、该病作为一种社会耻辱的反映、不同的宗教信仰和治疗费用。尽管教育和社会条件有所改善,但在许多中低收入国家,对这种疾病的污名化仍然很明显。相关的合并症和神经发育障碍进一步增加了成本和污名化。中低收入国家的儿科神经科医生/癫痫学家在对癫痫患者的护理和管理过程中遇到了独特的伦理、社会和经济困境。这篇文章讨论了发展中国家患德拉韦特综合症儿童的各种伦理困境。
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引用次数: 2
期刊
Journal of Pediatric Epilepsy
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