How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers.

OBJECTIVE: This study aimed to describe the characteristics of pediatric neurologists (PNs) in Latin America (LA) who attend to children and adolescents with epilepsy and convey to them the risk of sudden unexpected death in epilepsy (SUDEP). METHODS: Personal data and details of discussion of SUDEP with families, including relevance of SUDEP disclosure, frequency of such communication, perceived benefits and risks of disclosure, extent of training received on such disclosure, and professional experience with SUDEP, were collected through an online survey of PNs from LA. Their personal experience in carrying out this conversation was obtained through responses to an open question, further used to identify the main barriers. RESULTS: Of the 442 surveys received, 367 (83%) were analyzed. Most participants (73.8%) responded that the communication of SUDEP risk was relevant or very relevant; however, only 17.9% reported communicating it always or very frequently. Factors that increased the frequency of SUDEP communication included patients with higher levels of complexity (OR = 2.18, P = .003) and the physician's personal experience with SUDEP (OR = 2.305, P < .001). Direct questions from the family and avoiding scaring them about a rare outcome were the main motivations behind discussing and not discussing SUDEP, respectively. In the open question, respondents identified worries about the patient's ability to understand the information and cultural gaps as barriers. "Informing with the intention of improving adherence to treatment" and "establishing an empathic relationship" were significantly related. Further, the concept of "do not scare" was significantly related to "personal difficulties in discussing SUDEP." SIGNIFICANCE: Although most PNs agree that communication about SUDEP is relevant, only a minority actually engages in it. Participants identified a lack of appropriate training in such communication as a barrier. A better understanding of communication expectations, education of health professionals, and communication techniques have a strong relevance in diminishing the gap between guidelines and practice.

Survey on the worldwide availability and affordability of antiseizure medications: Report of the ILAE Task Force on Access to Treatment.

Health systems worldwide are challenged in the provision of basic medical services and access to treatments for chronic conditions. Epilepsy, the most common severe chronic neurological disorder, does not receive sufficient attention despite being officially declared a public health priority by the World Health Organization. More than 80% of people with epilepsy live in middle- and low-income countries (MICs and LICs, respectively), where most of the population lacks reliable access to antiseizure medications (ASMs), contributing significantly to the large epilepsy treatment gap in these regions. The International League Against Epilepsy (ILAE) Task Force on Access to Treatment administered a global survey to report on the current access to ASMs worldwide. The survey was developed and distributed online through the ILAE and International Bureau of Epilepsy (IBE) secretariats to the chapter representatives. The survey was completed by one representative per country. Response rate was 73.2% (101 countries of the 138 represented in ILAE and/or IBE organizations). Availability and access of ASMs, including distribution problems and costs, reimbursement procedures, general barriers to access to care, and presence of projects targeted toward improving care access, were studied, and descriptive statistics on available responses were performed. Among the 15 first-generation ASMs surveyed, carbamazepine was reported as the most widely available globally. At least one first-generation ASM is widely available in most countries, but their number differs dramatically across income levels. Second- and third-generation ASMs are even more limited in MICs and LICs. Additionally, average retail prices for ASMs were not significantly different across countries despite the differences in per capita income from high-income countries to LICs. This survey provides a worrisome picture of availability and accessibility of ASMs across the world, with wide disparities according to socioeconomic status. Recommendations for direct action on improving access to care will be discussed.

Acute symptomatic seizures secondary to autoimmune encephalitis and autoimmune-associated epilepsy: Conceptual definitions.

Seizures are a well-recognized and often prominent manifestation of autoimmune encephalitic syndromes. Progress in detection of pathogenic neural autoantibodies has led to increased awareness of autoimmune causes of seizures. Clinical studies of patients with these autoantibodies have improved our understanding of the seizure characteristics, treatments, and seizure prognosis in these disorders. The International League Against Epilepsy (ILAE) Autoimmunity and Inflammation Taskforce proposes conceptual definitions for two main diagnostic entities: (a) acute symptomatic seizures secondary to autoimmune encephalitis, and (b) autoimmune-associated epilepsy, the latter of which suggests an enduring predisposition to seizures. Such a distinction is relevant when discussing the pathophysiology, treatment, prognosis, and social consequences of these disorders. We discuss the role of biomarkers in the application of these conceptual definitions and illustrate their use in patients cared for by members of the task force.

[Clinical features of the attentional deficit and hyperactivity disorder in epilepsy]. / Características clínicas del trastorno de déficit atencional e hiperactividad en epilepsia.

Epilepsy and attention deficit and hyperactivity disorder (ADHD) are frequent conditions in pediatrics. Their association is frequent and complex, often sharing psychiatric comorbidity. Patients who present epilepsy and ADHD, show equal frequency in both genders, with the inattentive type, as predominant presentation. Cognitive deficit increases the risk of associating ADHD in patients with epilepsy. There is not enough evidence for other risk factors, however there is enough information that allows to ant icipate its presence in some types of epilepsy, with neuropsychological models that evidence the underlying network dysfunction. The relationship with frequency and seizure control, electroencephalographic alterations and antiepileptic drugs (AEDs) is also reviewed. Recommendations to reduce adverse effects of AEDs are described. The diagnosis must therefore be based on suspicion, through clinical instruments and assessments of cognitive functioning. Multimodal treatment is also recommended in patients with ADHD with and without epilepsy. Psych stimulants can be used safely. The quality of life of the patients and their families is affected, so it is advisable for them to be supported by a specialized team that could provide education, early assessment and therapy. If they are omitted, the consequences can be negative at school, social environment and emotional development, which could be relevant and become persistent.

La epilepsia y el trastorno por déficit de atención e hiperactividad (TDAH) son condiciones frecuentes en pediatría y suelen presentarse asociadas en muchos pacientes. Su relación es compleja y comparten comorbilidad psiquiátrica. Los pacientes con ambas condiciones conjuntas, epilepsia y TDAH, se presentan con igual frecuencia en ambos géneros, predominando la presentación inatenta. El déficit cognitivo incrementa el riesgo de asociar TDAH en pacientes con epilepsia. No hay evidencia suficiente para otros factores de riesgo, sin embargo, se puede anticipar su presencia en pacientes con algunos tipos de epilepsia y con modelos neuropsicológicos que evidencian la disfunción de redes subyacentes. Se revisa la relación con el control de crisis, las alteraciones electroencefalográficas y los fármacos antiepilépticos (FAEs). Se describen las recomendaciones para reducir efectos adversos de FAEs. El diagnóstico de TDAH en pacientes con epilepsia debe partir por la sospecha, a través de instrumentos clínicos y valoraciones de funcionamiento cognitivo. El tratamiento multimodal es recomendado para pacientes con TDAH con y sin epilepsia. Los psicoestimulantes se pueden usar con seguridad. La calidad de vida se afecta en pacientes y sus familias, por lo que la educación, pesquisa precoz y referencia para rehabilitación, están encaminadas a resolver las dificultades de estos pacientes. En caso contrario, se generan consecuencias negativas escolares, sociales y emocionales, que pueden ser relevantes y persistentes.

Características clínicas del trastorno de déficit atencional e hiperactividad en epilepsia / Clinical features of the attentional deficit and hyperactivity disorder in epilepsy

La epilepsia y el trastorno por déficit de atención e hiperactividad (TDAH) son condiciones frecuentes en pediatría y suelen presentarse asociadas en muchos pacientes. Su relación es compleja y comparten comorbilidad psiquiátrica. Los pacientes con ambas condiciones conjuntas, epilepsia y TDAH, se presentan con igual frecuencia en ambos géneros, predominando la presentación inatenta. El déficit cognitivo incrementa el riesgo de asociar TDAH en pacientes con epilepsia. No hay evidencia suficiente para otros factores de riesgo, sin embargo, se puede anticipar su presencia en pacientes con algunos tipos de epilepsia y con modelos neuropsicológicos que evidencian la disfunción de redes subyacentes. Se revisa la relación con el control de crisis, las alteraciones electroencefalográficas y los fármacos antiepilépticos (FAEs). Se describen las recomendaciones para reducir efectos adversos de FAEs. El diagnóstico de TDAH en pacientes con epilepsia debe partir por la sospecha, a través de instrumentos clínicos y valoraciones de funcionamiento cognitivo. El tratamiento multimodal es recomendado para pacientes con TDAH con y sin epilepsia. Los psicoestimulantes se pueden usar con seguridad. La calidad de vida se afecta en pacientes y sus familias, por lo que la educación, pesquisa precoz y referencia para rehabilitación, están encaminadas a resolver las dificultades de estos pacientes. En caso contrario, se generan consecuencias negativas escolares, sociales y emocionales, que pueden ser relevantes y persistentes.

Epilepsy and attention deficit and hyperactivity disorder (ADHD) are frequent conditions in pediatrics. Their association is frequent and complex, often sharing psychiatric comorbidity. Patients who present epilepsy and ADHD, show equal frequency in both genders, with the inattentive type, as predominant presentation. Cognitive deficit increases the risk of associating ADHD in patients with epilepsy. There is not enough evidence for other risk factors, however there is enough information that allows to ant icipate its presence in some types of epilepsy, with neuropsychological models that evidence the underlying network dysfunction. The relationship with frequency and seizure control, electroencephalographic alterations and antiepileptic drugs (AEDs) is also reviewed. Recommendations to reduce adverse effects of AEDs are described. The diagnosis must therefore be based on suspicion, through clinical instruments and assessments of cognitive functioning. Multimodal treatment is also recommended in patients with ADHD with and without epilepsy. Psych stimulants can be used safely. The quality of life of the patients and their families is affected, so it is advisable for them to be supported by a specialized team that could provide education, early assessment and therapy. If they are omitted, the consequences can be negative at school, social environment and emotional development, which could be relevant and become persistent.

Saberes ancestrales y prácticas tradicionales: embarazo, parto y puerperio en mujeres Colla de la región de Atacama / Ancestral knowledge and traditional practices: pregnancy, childbirth, and puerperio in women Colla of the Atacama region

Etnografía feminista que indaga en los saberes ancestrales y las prácticas de cuidado transmitidas intergeneracionalmente por mujeres colla de la región de Atacama, Chile, en virtud de las etapas vitales del embarazo, parto y puerperio. Los resultados del estudio revelan que son conocimientos encarnados en los cuerpos, oralidades y experiencias de mujeres colla, transmitidos matrilinealmente mediante una sólida red familiar y comunitaria, situados en el territorio atacameño, apegados a las costumbres y tradiciones culturales propias de su pueblo. El proceso investigativo reconoce la profunda sabiduría ancestral de la medicina indígena colla, recuperada por medio de la me moria larga de las mujeres indígenas, fundamentada tanto en el compartir saberes y prácticas en salud y nutrición como el parir y criar en virtud de su historia y cultura. Las mujeres colla ponen en el centro los cuidados del cuerpo y la maternidad colectiva, la preservación de la ancestralidad y la desmedicalización de los procesos femeninos, transformándose así en su principal estrategia de resistencia cultural descolonizadora

Epilepsy for primary health care: a cost-effective Latin American E-learning initiative.

A lack of neurologists in Latin America forces primary health care providers to manage epilepsy. With the main goal of improving diagnostic and therapeutic management of patients with epilepsy through training of physicians in the primary health care level, the International League Against Epilepsy Education Commission (2013-2017) created a low-cost, regional, virtual course. The course, set-up in Moodle platform, was structured in eight modules, each lasting for a week. Teaching was based on written didactic material, videos, and interactive discussions, both in Spanish and Portuguese. Topics included epidemiology, diagnosis, classification, treatment, prognosis, social issues, and epilepsy policies. Each course was limited to 50 participants and priority was given to general practitioners. Certification was given to those approving the final examination. Since 2015, five courses have been developed, involving 143 participants from 17 countries and 21 tutors. Of the participants, 61% worked in primary health care services. A total of 129 participants (90%) completed the course, and 110 submitted the final examination with an approval rate of 95%. From 85 participants completing the course evaluation, 98% would recommend the course to other colleagues, and 99% showed interest in taking other similar courses. High self-confidence for the management of patients with epilepsy increased from 21% at baseline to 73% after the course. The online course on epilepsy for primary care physicians in Latin America was shown to be a cost-effective course, with good retention and excellent approval rates. Our current challenges include periodic updating, complete self-sustainability, and exploring different strategies to reach our target audience more effectively.

Vigabatrin-induced MRI changes associated with extrapyramidal symptoms in a child with infantile spasms.

Vigabatrin is an antiepileptic drug used for treatment of infantile spasms. We present a female patient with infantile spasms in treatment with vigabatrin who developed ataxic movements. MRI demonstrated a symmetrical pattern of thalamic and globi pallidi diffusion restriction. While these image features have been widely described to be related to the use of vigabatrin, this case highlights the development of movement disorders in association with MRI signal changes. Awareness of the reversible nature of this condition is reassuring for the treating team and avoids unjustified studies.

Estado epiléptico en pediatría / Status epilepticus in childhood

El estado epiléptico es la forma de presentación de crisis de epilepsia más alarmante y severa. Es un cuadro clínico de alta morbimortalidad con un alto riesgo de daño cerebral entre los pacientes que sobreviven, cuyo pronóstico está determinado por la edad de presentación, duración de la crisis y etiología subyacente.

Neuropsicofármacos y neurodesarrollo / Psychotropic drugs and neurodevelopment

La infancia temprana es un tiempo de importantes cambios en el cerebro humano. Existe en la actualidad preocupación por el aumento de la indicación de psicotrópicos en preescolares, ya que hay muy pocos estudios controlados que muestren efectividad en este grupo de edad y el diagnóstico neurológico y / o psiquiátrico en preescolares es difícil de efectuar, con un suficiente grado de confiabilidad. Se requiere analizar cada paciente antes de indicar psicofármacos que pueden alterar el desarrollo cerebral.

Cefalea en niños y adolescentes / Headache in children and adolescents

La cefalea es un problema de salud pública y plantea grandes desafíos en diagnóstico y tratamiento. La epidemiología de cefalea en niños y adolescentes, presenta una prevalencia de 30 por ciento entre los 3 y 15 años y de migraña de un 3-4 por ciento. La clasificación de la Sociedad Internacional de Cefaleas incorpora criterios para el diagnóstico de migraña infantil. Las principales diferencias con el adulto son: la duración, lateralidad y síntomas asociados como foto y/o fonofobia. La clasificación temporal de cefalea, diferencia la cefalea aguda, aguda recurrente, crónica no progresiva y crónica progresiva. La cefalea mixta, combina más de un tipo de cefalea. En la fisiopatología, se describen las vías involucradas en la activación del dolor como también los sistemas moduladores. Se analizan las teorías (muscular, vascular y neurogénica) que intentan explicar el fenómeno. El diagnóstico se basa en la historia clínica, examen físico y pruebas complementarias. En tratamiento se consideran medidas no farmacológicas, (educación, prevención, control ambiental de gatillantes) y farmacológicas. El uso de profilaxis continua es según frecuencia de eventos. Si bien faltan estudios en niños, la creación de unidades de cefalea que aborden en forma multidisciplinaria esta morbilidad, tendrán éxito si se usan protocolos ordenados, interactuando con las consultas de especialidad en aquellos casos de mayor complejidad, que no responden a intervenciones básicas, definidas éstas de acuerdo a la realidad local de cada unidad de cefalea.

Headache is a public health problem which presents challenges in diagnosis and therapy. In epidemiologic reports, headache prevalence in children to years old is 30 percent. Prevalence for migraine is to The International Headache Society Classification has now included pediatric criteria for migraine diagnosis. Main differences with adults are: duration, laterality and associated symptoms like photo and/or phonophobia. Classification according to the temporal profile includes categories such as: acute headache, acute recurrent headache, chronic progressive and chronic non progressive headache. The mixed-pattern refers to presentation with more than one type of headache. Physiopathology of pain and modulating system is described and analysis is made of different theories (muscular, vascular and neurogenic) to understand the principal causes of headaches. The clue of headache diagnosis is the clinic history, physical examination and laboratory tests. Treatment involves non pharmacological approaches (education, prevention, trigger avoidance), and medication. There are not enough studies in children, so the establishment of headache clinics will allow a multidisciplinary approach, the application of defined protocols and interaction with other specialties in more complex cases.

Variables psicosociales en cefalea infantil / Psychosocial variables in child headache

La cefalea es un motivo frecuente de consulta en niños y adolescentes. Los factores psicológicos influyen en la evolución sintomática y han sido abordados desde distintos puntos de vista según los diversos modelos teóricos. Para realizar diagnóstico de cefalea se debe objetivar evolución, frecuencia, intensidad, horario y duración, localización, características del dolor, síntomas asociados, factores desencadenantes, antecedentes familiares y antecedentes personales. El objetivo de este estudio fue evaluar las variables psicológicas y sociales en pacientes que consultan en la Unidad de Cefalea del Servicio de Neurología Infantil del Hospital San Juan de Dios. Los pacientes fueron evaluados mediante una encuesta diseñada por el equipo, que incluyó las variables psicológicas a estudiar: características personales, disfunción y conflictos familiares, violencia intrafamiliar y problemas en el ámbito escolar. Se caracterizó el nivel socioeconómico mediante escala de Graffar. Los pacientes con cefalea evaluados se presentaron con mayor frecuencia en sexo femenino. Se encontró frecuentemente alteración de las variables psicológicas estudiadas. Al plantear el tratamiento, hay diversas modalidades de intervención, así se realizó manejo familiar y/o individual. La inclusión de variables psicosociales, parecen ser útiles tanto en la evaluación como en el posterior diseño de estrategias de intervención que apoyen el tratamiento de estos pacientes.

Headache is a frequent symptom in children and adolescents. Psychological variables affect the clinical evolution and they have been approached from different theoretical models. Headache diagnosis requires specifying course, frequency, intensity, duration, localization, associated symptoms, family and personal history. The aims of this study were to evaluate the psychological and social variables in outpatients consulting the Headache Unit in Neurology Pediatric Service of Hospital San Juan de Dios. The patients were assessed with a structured questionnaire designed for this purpose and socioeconomic status was evaluated with Graffar scale. The patients of our sample were mainly females. The psychological variables were frequently present in all patients. There are different treatments for this kind of pathology; we chose family and/or individual interventions depending on the case. This approach seems to be useful both to proper assessment and treatment strategies for these patients.

Epidemiología en cefalea de niños y adolescentes / Epidemiology of headache in children and adolescents

Cefalea es dolor ubicado por sobre la línea órbito meatal, con etiología definida en su mayoría con la anamnesis. La prevalencia es variable según edad y es un problema asistencial importante. Los objetivos de este estudio descriptivo son: presentar una experiencia de modelo de atención, la Unidad de Cefalea del Servicio de Neurología Infantil de Hospital San Juan de Dios y describir las características epidemiológicas generales encontradas. Pacientes y Métodos: Se diseña programa de atención y se describen las características clínicas generales. Resultados: Se presenta flujograma. Se citan 225 pacientes a primera evaluación (enero-diciembre 2004) y entre enero y julio de 2004, 153 pacientes (edad promedio fue de 10,48 años, DS:2,91, rango 2 a 14 años). En la distribución por edad y sexo de los 225 pacientes, hubo mayor proporción de niños en edad prepuberal y más niñas en edad postpuberal. De 476 casos (2004-2005), 360 pacientes reciben primera atención y un 54,7 por ciento abandona controles a través del tiempo. De 112 pacientes analizados, 65 tenían antecedentes familiares de migraña. La cefalea interrumpió colegio, actividad física, estudio y/o demandó la asistencia a servicio de urgencia en un alto porcentaje; dolor bilateral: 90 casos y frontal: 67; dolor opresivo en 27 niños y pulsátil en 41. Fueron gatillantes: ejercicio físico, estrés escolar y/o familiar entre otros. Se cuantifican Cefaleas Primarias 90 casos y Secundarias 9 (IHS 2004). Discusión y conclusiones: La baja adherencia está descrita en otros cuadros crónicos. Se afectó la calidad calidad de vida en forma relevante en este grupo evaluado. El uso de protocolos de tratamiento e intervención multidisciplinaria permite abordar esta morbilidad biopsicosocialmente con grandes posibilidades de éxito.

Headache is a skull pain whose etiology is best defined through the clinical history. Its prevalence varies with age and it is a very important problem in public health. The aims in this descriptive work are: To report the experience n the Pediatric Neurology Service Headache Unit (Hospital San Juan de Dios) and to describe the epidemiologic characteristics of children consulting because of headache. Patients and methods: The protocol applied and clinical characteristics are presented. Results: The patients chart flow and general clinical aspects are described. The analysis was done in 225 patients who had a first appointment between January December 2004 and 153 patients attended between January and July (average age: 10,48, SD: 2,91, range to years old). In the first group of 225 patients, pre-pubertal boys and postpuberal girls were more frequent. . From 476 cases (2004-2005), 360 patients had a first assessment and 54, 7 percent of them abandoned follow up. In patients studied, 65 had a family history of migraine. Headache interrupted school attendance, sports, studies or required therapy in emergency room in a large number of patients; Characteristics of pain were: bilateral in 90 cases and frontal in 67; oppressive pain in 27 children and throbbing or pulsatile in 41. Triggers identified were: sports, school or familial stress. There were 90 cases which corresponded to primary headaches: and 9 to secondary etiologies. (IHS 2004). Discussion and conclusions: The low adherence to treatment is also described in other chronic diseases. The quality of life was affected in this population. The use of diagnostic and therapeutic protocols and multidisciplinary intervention helps to improve prognosis.

Síndrome del hemisferio derecho en niños: una entidad clínica a definir / Right hemisphere syndrome in children: a clinical entity to be defined

El síndrome hemisférico derecho es una entidad diagnóstica inicialmente planteada en adultos, secundario a lesiones adquiridas a este nivel. La literatura describe un cuadro clínico similar en niños, como resultado de un trastorno del desarrollo que puede ser de origen genético o adquirido por noxas perinatales. Las características clínicas en que se basa esta entidad se relacionan básicamente con trastornos en la interacción social, síntomas conductuales, alteraciones pragmáticas del lenguaje, signos físicos de disfunción hemicuerpo izquierdo y hallazgos específicos en pruebas neuropsicológicas (WISC discordante, alteraciones visoespaciales, discalculia). También se ha descrito el hallazgo de parientes con síntomas similares. Las formas clínicas de este cuadro en niños no están claramente estandarizadas, con pruebas que sean universalmente aceptadas. Se presenta una serie de 3 casos con trastornos de conducta cuya evaluación clínica cumpliría con los criterios diagnósticos planteados. Se comentan los hallazgos de la literatura, y se describen las perspectivas terapéuticas que en la actualidad existen