Journal of Pediatric Epilepsy最新文献

{"title":"Ethical Issue as the Limiting Factor for Epilepsy Surgery","authors":"S. Gedela, C. Korff","doi":"10.1055/s-0040-1714355","DOIUrl":"https://doi.org/10.1055/s-0040-1714355","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81461959","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An Overview of Anxiety Disorders and Depression in Children with Epilepsy: A Literature Review","authors":"O. Gökçen, M. Turgut","doi":"10.1055/s-0040-1715566","DOIUrl":"https://doi.org/10.1055/s-0040-1715566","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84182156","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Practical Ethical Approaches for Common Issues in Pediatric Epilepsy","authors":"C. Lancaster","doi":"10.1055/s-0040-1715563","DOIUrl":"https://doi.org/10.1055/s-0040-1715563","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86808357","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Issues in Pediatric Epilepsy","authors":"E. Posner, C. Lancaster","doi":"10.1055/s-0040-1715565","DOIUrl":"https://doi.org/10.1055/s-0040-1715565","url":null,"abstract":"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","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87558344","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"At What Point Should We Discontinue Treatment in Super-Refractory Status Epilepticus?","authors":"A. Datta","doi":"10.1055/s-0040-1714389","DOIUrl":"https://doi.org/10.1055/s-0040-1714389","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87909753","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Quality of Life Dilemmas in Pediatric Patients with Epilepsy Residing in Long-Term Care Facilities","authors":"L. Tran","doi":"10.1055/s-0040-1714356","DOIUrl":"https://doi.org/10.1055/s-0040-1714356","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90868554","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Repetitive Arm and Hand Movements (Complex Motor Stereotypy) in a Six-Year Boy","authors":"R. Koul, R. Hora","doi":"10.1055/s-0040-1712162","DOIUrl":"https://doi.org/10.1055/s-0040-1712162","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-07-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81298023","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the Role of Pediatric Neurology in Determinations of Futility, Identifying Vulnerability, and Participating in Shared Decision Making through Case-Based Analysis","authors":"Julio Quezada, J. Lantos","doi":"10.1055/s-0040-1714354","DOIUrl":"https://doi.org/10.1055/s-0040-1714354","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78985788","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Social and Economic Challenges to Implementing the Ketogenic Diet: A Case Series","authors":"Sloan Lynch, Catherine N. Barry, L. Douglass","doi":"10.1055/s-0040-1713908","DOIUrl":"https://doi.org/10.1055/s-0040-1713908","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83654983","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical, Social, and Economic Challenges in Managing a Child with Dravet Syndrome in a Developing Country","authors":"S. Gulati, R. Sinha, Priyanka Madaan","doi":"10.1055/s-0040-1714065","DOIUrl":"https://doi.org/10.1055/s-0040-1714065","url":null,"abstract":"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.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81572688","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}