Browse Items · Pediatric Palliative Care Library

Pediatric Palliative Care Education in Child Neurology Residency: A National Needs Assessment

Background: Child neurologists require primary palliative care (PC) skills to care for patients with high symptom burdens and variable prognoses. The existing scope of PC education in child neurology training is unclear. We conducted a national…

Tags: 2025, April List 2025, Campen CJ, Koshiya HG, Lin GL, Nguyen VP, Pediatric Neurology, Shear TC, Staub KA

Need for palliative care from birth to infancy in pediatric patients with neurological diseases

BACKGROUND: Palliative care is a comprehensive treatment approach that guarantees comfort for pediatric patients and their families from diagnosis to death. The techniques used for neurological patients in the field of palliative care can enhance the…

Tags: 2023, Clinical and Experimental Pediatrics, Falsaperla R, Marino S, Marino SD, Moscheo C, Newborn Infant, Palliative Care, Pavone P, Pediatric Neurology, Ruggieri M, Sciuto C, September List 2035, Sullo F, Tardino LG, Vitaliti G

Characterization of Death in Infants With Neonatal Seizures

Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at…

Disturbances in cardiorespiratory function during day and night in Rett syndrome

Rett syndrome causes severe autonomic dysregulation, probably due to brainstem dysfunction. Because the brainstem plays a decisive role in cardiorespiratory regulation during sleep, we investigated cardiorespiratory function in 12 girls with Rett…

Tags: 2007, Albåge M, apnea, breathing difficulties, characteristics, Eriksson M, Fernell E, hypoventilation, Katz-Salamon M, Lagercrantz H, Pediatric Neurology, Rett syndrome, Rohdin M, shallow breathing, Trajectory

Health-related quality of life in children with Friedreich ataxia

The use of health-related quality of life scales as outcome measures in clinical trials is increasing. Although such measures have been validated in adults with Friedreich ataxia, they have not been studied in children with this disorder. The…

Tags: 2010, Adolescent Child Female, alertness, Fatigue, Friedman L S, Friedreich ataxia, Friedreich Ataxia/pp [Physiopathology], Friedreich Ataxia/px [Psychology], Health Status, Humans, Lynch D R, Male, Myers L M, Paulsen E K, Pediatric Neurology, Quality Of Life/px [psychology], scale development, tool development

Neuronal Ceroid Lipofuscinosis and Associated Sleep Abnormalities

Purpose: The aims of this study were to evaluate sleep difficulties in children with neuronal ceroid lipofuscinosis and to determine the association between the sleep difficulties and the onset of seizures and loss of vision.Method: We recruited…

Tags: 2016, characteristics, de los Reyes E, Lehwald L M, loss of vision, NCL3, Pappa R, Pediatric Neurology, Seizures, sleep disturbance/disorders, Steward S, Trajectory

Pilot Validation of the Tuberous Sclerosis-Associated Neuropsychiatric Disorders (TAND) Checklist

BACKGROUND: Tuberous sclerosis complex is a multisystem disorder that includes a range of tuberous sclerosis associated neuropsychiatric disorders (TAND). The lifetime prevalence rates of TAND are very high; yet surveys suggest that the majority of…

Sleep Problems in Children With Agenesis of the Corpus Callosum

Background: Very little is known about sleep habits in children with agenesis of the corpus callosum (ACC). The purpose of this investigation was to evaluate sleep problems in children with ACC and examine the association with quality of…

Tags: 2017, agenesis of the corpus callosum, characteristics, Churchill S S, Ingram D G, Pediatric Neurology, Quality Of Life, sleep disturbance/disorders, Trajectory

Prospective study of spinal muscular atrophy before age 6 years. DCN/SMA Group

Spinal muscular atrophy (SMA) is a common neuromuscular disorder of childhood, associated with a high mortality rate during the first 2 years of life. Most practitioners expect patients with SMA to follow a progressive course with loss of muscle…

Sleep alterations in juvenile neuronal ceroid-lipofuscinosis

In juvenile neuronal ceroid-lipofuscinosis (JNCL), sleep disorders are common. The purpose of this study was to investigate the sleep structure of 28 patients with JNCL compared with healthy controls subjects and to clarify the pathophysiology…

Preliminary Study of Neurodevelopmental Outcomes and Parenting Stress in Pediatric Mitochondrial Disease

Background Little is known regarding the neuropsychological profiles of pediatric patients with mitochondrial diseases or their parents, information that is crucial for improving the quality of life (QOL) for both patients and parents. We aimed to…

Defining Hand Stereotypies in Rett Syndrome: A Movement Disorders Perspective

INTRODUCTION: Hand stereotypies (HS) are a primary diagnostic criterion for Rett syndrome (WIT) but are difficult to characterize and quantify systematically. METHODS: We collected video on 27 girls (2-12 years of age) with classic RTT who…

Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist

BACKGROUND: Tuberous sclerosis complex is a multisystem genetic disorder with a range of physical manifestations that require evaluation, surveillance, and management. Individuals with tuberous sclerosis complex also have a range of behavioral,…

Tags: 2015, Behavior, Byars A W, de Vries P J, Dunn D, Ess K C, feeding difficulties, Hook D, J ansen A, King B H, Leclezio L, Pediatric Neurology, Sahin M, scale development, sleep disturbance, TAND checklist, tool development, Tuberous Sclerosis, Whittemore V H

Prolonged-release melatonin for children with neurodevelopmental disorders

Previous studies demonstrated the efficacy and safety of prolonged-release melatonin in children and adolescents with neurodevelopmental and behavioral disorders. The long-term effectiveness and safety of prolonged-release melatonin treatment were…

Tags: 2011, De Leersnyder H, Laudon M, melatonin, Pediatric Neurology, pharmacologic intervention, PR melatonin, prolonged-release melatonin, Rett syndrome, sleep disturbance/disorders, Zisapel N

Defining death: when physicians and family differ

2014-10

Tags: 2014, Backlog, Breningstall GN, Journal Article, Pediatric Neurology

Rotavirus gastroenteritis and seizures in young children

In this retrospective cohort study, a clinical and administrative database of children hospitalized at Primary Children's Medical Center, Salt Lake City, Utah, between January 1, 2002, and December 31, 2006, was used to identify those with…

Are males with duchenne muscular dystrophy at risk for reading disabilities?

Males with Duchenne muscular dystrophy have sub-average cognitive capacities and may manifest more specifically language-related deficits. In the current study, the information-processing capacity, reading performance, and behavioral functioning of…

Tags: 2006, Backlog, Hendriksen J, Journal Article, Pediatric Neurology, PedPal Lit, Vles JS

Links between abnormal brain structure and cognition in holoprosencephaly

Converging information on medical issues, motor ability, and cognitive outcomes is essential when addressing long-term clinical management in children with holoprosencephaly. This study considered whether adding more informative structural indices to…

Early peripheral nervous system manifestations of infantile Krabbe disease

Early infantile Krabbe disease is relatively frequent in the Muslim-Arab population in Israel. It can be easily diagnosed when it presents with the classic clinical picture characterized by central nervous system manifestations of spasticity,…

Magnetic resonance spectroscopy in Niemann-Pick disease type C: Correlation with diagnosis and clinical response to cholestyramine and lovastatin.

Niemann-Pick type C is an autosomal-recessive, neurovisceral storage disorder that results from defective cholesterol esterification. Cholesterol-lowering agents have been demonstrated to decrease hepatic lipids in Niemann-Pick type C patients. The…

Rapid cycling in severely multidisabled children: a form of bipolar affective disorder?

A debilitating, regularly recurring, biphasic disorder is described in 6 severely multidisabled children. It was characterized by several days of lethargy, withdrawal, loss of abilities, irritability, and hypersomnolence followed or preceded by a…

Tags: 1994, Abroms IF, Adolescence, Amnestic, Anticonvulsants/tu [Therapeutic Use], Backlog, Bipolar Disorder/di [Diagnosis], Bipolar Disorder/dt [Drug Therapy], Bipolar Disorder/ge [Genetics], Bipolar Disorder/px [Psychology], Brown GM, Case Report, Child, Cognitive Disorders/di [Diagnosis], Cognitive Disorders/dt [Drug Therapy], Cognitive Disorders/ge [Genetics], Cognitive Disorders/px [Psychology], Connolly MB, Delirium, Dementia, Disabled Persons/px [Psychology], Espezel H, Female, Freeman RD, Human, Jan JE, Journal Article, Lithium/tu [Therapeutic Use], Male, Mental Retardation/di [Diagnosis], Mental Retardation/ge [Genetics], Mental Retardation/px [Psychology], Pediatric Neurology, Preschool, Psychomotor Agitation/di [Diagnosis], Psychomotor Agitation/px [Psychology], Psychotropic Drugs/tu [Therapeutic Use], Risk Factors, Sleep Stages

Melatonin for the treatment of handicapped children with severe sleep disorders

Sleep disorders are common in children with mental retardation and neurologic disorders. Melatonin, a recently developed natural compound, has been used successfully in sleep disorders. I report my experience with melatonin in an open, prospective…

Update on genetic disorders affecting white matter

The classification of diseases affecting white matter has changed dramatically with the use of magnetic resonance imaging. Classical leukodystrophies, such as metachromatic leukodystrophy and Krabbe's disease, account for only a small number of…

Tags: 2001, Backlog, Brain Diseases/diagnosis/genetics/metabolism/pathology, Brain/pathology, Child, Diagnosis, Differential, Hereditary Central Nervous System Demyelinating Diseases/diagnosis/genetics/pathology, Humans, Journal Article, Kaye EM, Magnetic Resonance Imaging, Pediatric Neurology

Families caring for chronically ill children with tuberous sclerosis complex.

Families who care for children with tuberous sclerosis complex (TSC) tend to experience severe psychological stress. Families react to TSC with guilt, chronic grief, and a gradual loss of spontaneity. Since TSC is a relatively rare pediatric…

Tags: 1996, Backlog, Caregivers, Caregivers-Psychological Aspects, Chronically Ill Children-Home Care, Family & Community Health, Journal Article, Longitudinal Studies, Parker M, Pediatric Neurology, Pediatric Neurology-Care and Treatment, Stress (Psychology), Stress (Psychology)-Care and Treatment, Tuberous Sclerosis, Tuberous Sclerosis-Psychological Aspects

Browse Items (28 total)