Browse Items · Pediatric Palliative Care Library

Parent Experience Of Neonatal Encephalopathy: The Need For Family-centered Outcomes

We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study…

Tags: 2017, Anoxia, Boss RD, Donohue PK, Hypoxic-ischemic Encephalopathy, Infant, Infant Newborn, Ischemia, Journal of Child Neurology, Lemmon M E, May 2017 List, Neonatal Development, Neonatal Encephalopathy, Northington FJ, Parent, Parkinson C, Therapeutic Hypothermia, Therapeutic Processes

A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program

Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services…

Tags: 2012, A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program, Adolescent, Child, Child Preschool, Female, Ho C, Humans, Infant, Journal of Child Neurology, Male, Neuromuscular Diseases/ Mortality/ Nursing, Palliative Care/ Methods/ Utilization, Pediatrics, Retrospective Studies, Straatman L, Terminal Care

Infantile spasms (West syndrome) in children with inborn errors of metabolism: a review of the literature

Tags: 2012, Backlog, Gkampeta A, Journal Article, Journal of Child Neurology, Pavlou E

Neurologic course of congenital disorders of glycosylation

Congenital disorders of glycosylation, formerly called carbohydrate-deficient glycoprotein syndrome, may present in infancy with slowly progressive neurologic deficits including cognitive impairment, ataxia, pigmentary retinal degeneration, and…

Nova Scotia Niemann-Pick disease (type D): Clinical study of 20 cases.

Patients with Niemann-Pick type D have been traced to a single Acadian ancestor in Nova Scotia. The objective of this study was to describe the clinical course. A cohort of children with Niemann-Pick type D was identified by chart review. Some…

Tags: 1998, Age of Onset, Backlog, Camfield PR, Cause Of Death, Child, Female, Humans, Jan MM, Journal Article, Journal of Child Neurology, Longitudinal Studies, Male, Niemann-Pick Diseases/epidemiology/genetics/pathology, Nova Scotia, Preschool

Neurologic presentations of mitochondrial disorders

This article describes the neurologic presentations of children with mitochondrial disorders. The charts of 42 children with highly suspect mitochondrial disorders were reviewed. Thirty-seven children were diagnosed as having definite mitochondrial…

Oral pharmacotherapy of childhood movement disorders

Movement disorders, a common problem in children with neurologic impairment, are receiving increasing clinical attention. The differences in movement disorders between adults and children are striking; presentation is frequently insidious and may be…

Tags: 2003, Administration, Age of Onset, Ataxia/drug therapy, Backlog, Basal Ganglia/physiopathology, Child, Edgar TS, Humans, Hyperkinesis/drug therapy, Hypokinesia/drug therapy, Journal Article, Journal of Child Neurology, Movement Disorders/drug therapy/physiopathology, Muscle Hypotonia/drug therapy/physiopathology, Muscle Spasticity/drug therapy, Neuromuscular Agents/administration & dosage, Oral, Posture

Movement disorders in children: definitions, classifications, and grading systems

Disorders that affect movement in children are relatively common. However, they have received little attention, especially when compared with epilepsy and neuromuscular disorders. In this review article, we address the major types of movement…

Tags: 2003, Albright AL, Ataxia/physiopathology, Athetosis/physiopathology, Backlog, Child, Chorea/physiopathology, Delgado MR, Dystonia/classification/physiopathology, Humans, Journal Article, Journal of Child Neurology, Movement Disorders/classification/diagnosis/physiopathology, Muscle Rigidity/physiopathology, Muscle Spasticity/physiopathology, Myoclonus/physiopathology, Tics/physiopathology, Tremor/physiopathology

Unusual clinical presentations in four cases of Leigh disease, cytochrome C oxidase deficiency, and SURF1 gene mutations

Mutations in the SURF1 gene are the most frequent causes of Leigh disease with cytochrome c oxidase deficiency. We describe four children with novel SURF1 mutations and unusual features: three had prominent renal symptoms and one had ragged red…

Consensus statement on standard of care for congenital muscular dystrophies

Congenital muscular dystrophies are a group of rare neuromuscular disorders with a wide spectrum of clinical phenotypes. Recent advances in understanding the molecular pathogenesis of congenital muscular dystrophy have enabled better diagnosis.…

Incidental neuroimaging findings in nonacute headache

We studied the frequency and consequences of incidental neuroimaging findings in 400 otherwise healthy, nonacute pediatric headache patients through a retrospective, cross-sectional analysis. We excluded patients with currently recommended clinical…

ABRV (or Abbrevobabble Revisited)

Tags: 2009, Abbreviations as Topic, Backlog, Biomedical Research/standards, Brumback RA, Interdisciplinary Communication, Journal Article, Journal of Child Neurology, Language, Peer Review, Periodicals as Topic/standards, Research/standards

Success at publishing in biomedical journals: hints from a journal editor

Tags: 2009, Authorship, Backlog, Biomedical Research, Brumback RA, Journal Article, Journal of Child Neurology, Peer Review, Periodicals as Topic, Publishing, PubMed, Research

Diagnostic yield of brain biopsies in children presenting to neurology

The role of brain biopsy is well established in patients with neoplastic lesions, with a diagnostic yield approaching 95%. The diagnostic yield of brain biopsy in adults with neurological decline varies from 20% to 43%. Only a few studies have…

Mapping the Literature: Palliative Care Within Adult and Child Neurology

Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding…

Tags: 2014, Backlog, Dallara A, End-of-life Care, Journal Article, Journal of Child Neurology, Meret A, neurologic, Saroyan JM

Functional electrical stimulation therapy for recovery of reaching and grasping in severe chronic pediatric stroke patients

Stroke affects 2.7 children per 100,000 annually, leaving many of them with lifelong residual impairments despite intensive rehabilitation. In the present study the authors evaluated the effectiveness of 48 hours of transcutaneous functional…

Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved

BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about…

Tags: 2018, Care coordination, February 2019 List, health care professional, Hjorth E, Jeppesen J, Journal of Child Neurology, Kreicbergs U, Lövgren M, Neuromuscular Disease, parental perception, Pediatric Palliative Care, Rahbek J, Sejersen T, Spinal Muscular Atrophy, Werlauff U

Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey

OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness. STUDY DESIGN:: A full population survey,…

Tags: 2019, Beernaert K, End-of-life Care, Jeppesen J, Journal of Child Neurology, Kreicbergs U, Lovgren M, March 2019 List, Neonatology, Palliative Care, Pediatrics, Rahbek J, Sejersen T, Sma, Werlauff U

Diagnosis and Management of Drooling in Children With Progressive Dystonia: A Case Series of Patients With MEGDEL Syndrome

Drooling is a common problem in children with progressive dystonia. The authors noted a 58% incidence of drooling in 22/38 children with MEGDEL, a rare neurodegenerative cause of dystonia and report on the clinical course of four patients. Drooling…

Tags: 2016, adenotonsillectomy, advice to interrupt tongue protrusion, antireflux medication, bilateral submandibular gland excision, Blommaert D, Erasmus C E, feeding advice, feeding difficulties, Hoogen F J A van den, Journal of Child Neurology, MEGDEL syndrome, parotid duct ligation, pharmacological intervention, surgical intervention, van Hulst K, Wortmann S B

Melatonin appears ineffective in children with intellectual deficits and fragmented sleep: six "N of 1" trials

Melatonin for treatment of sleep disorders in children with developmental disabilities

This study explored the safety and efficacy of synthetic melatonin in the treatment of sleep problems in 20 children with developmental disabilities, in a randomized, double-blind, placebo-controlled 6-week trial of melatonin versus placebo. All but…

Tags: 2001, Developmental Disabilities, Dodge N N, Journal of Child Neurology, melatonin, Neurosciences & Neurology, Pediatrics, pharmacologic intervention, sleep disturbance/disorders, unspecified developmental disabilities, Wilson G A

Longitudinal Hand Function in Rett Syndrome

Loss of hand function is a core feature of Rett syndrome. This article describes longitudinal hand function at 3 time points for 72 subjects participating in the Australian Rett Syndrome Database. Approximately 40% of subjects with some grasping…

Tags: 2011, Bebbington A, characteristics, Downs J, Journal of Child Neurology, Kaufmann W E, Leonard H, Rett syndrome, tone and motor problems, Trajectory

Change in gross motor abilities of girls and women with rett syndrome over a 3- to 4-year period

Rett syndrome is a rare but severe neurological disorder typically associated with a mutation in the MECP2 gene. We describe change in gross motor function over 3 to 4 years for 70 subjects participating in the Australian Rett Syndrome Database.…

Respiratory disturbances in rett syndrome: Don't forget to evaluate upper airway obstruction

Rett syndrome is characterized by loss of motor and social functions, development of stereotypic hand movements, seizures, and breathing disturbances. This study evaluates the presence of overnight respiratory disturbances. Polysomnography in…

Tags: 2012, Bijlmer R P G M, breathing difficulties, characteristics, Hagebeuk E E O, Journal of Child Neurology, Koelman J H T M, Poll-The B T, respiratory muscle strength, Rett syndrome, Trajectory

Melatonin excretion in normal children and in tuberous sclerosis complex with sleep disorder responsive to melatonin

To determine normal melatonin excretion patterns in healthy children without sleep disorder and to compare these with those of patients with tuberous sclerosis complex and sleep disorder responsive to exogenous melatonin, we measured…

Effect of melatonin dosage on sleep disorder in tuberous sclerosis complex

We report a randomized, double-blind, controlled, crossover trial investigating the response to oral melatonin using two dose regimens in patients with sleep disorders associated with tuberous sclerosis complex. Eight outpatients with tuberous…

Sleep and Its Disturbance in a Variant Form of Late Infantile Neuronal Ceroid Lipofuscinosis (CLNS)

To examine the nature of sleep disturbance in patients with a variant form of late infantile neuronal ceroid lipofuscinosis (CLNS), we studied 12 patients (age range 7-32 years). We used a sleep questionnaire to assess sleep and its disturbances…

Tags: 2001, characteristics, Journal of Child Neurology, Kirveskari E, NCL5, Partinen M, Santavuori P, sleep disturbance/disorders, Trajectory

Botulinum Toxin Type A for the Treatment of Equinus Deformity in Patients With Mucopolysaccharidosis Type II

Mucopolysaccharidoses are lysosomal storage disorders that are caused by a deficiency in the enzymes that degrade glycosaminoglycans. The accumulation of glycosaminoglycans affects multiple systems, resulting in coarse facial features, short stature,…

Movement disorder in ataxia-telangiectasia: treatment with amantadine sulfate

Ataxia-telangiectasia is a cerebellar neurodegenerative disorder presenting with ataxia, chorea, myoclonus, and bradykinesia. Literature on treatment of movement disorders is scarce. We treated 17 children (aged 11.2 +/- 3.9 years) for 8 weeks with…

Fatigue and depression in children with demyelinating disorders

Fatigue and depression have been shown to be significant problems in children with multiple sclerosis. The rate at which these conditions occur in children with other acquired demyelinating syndromes is unknown. In this cross-sectional study, the…

Gait, Balance, and Coordination Impairments in Niemann Pick Disease, Type C1

This is the first study to objectively measure gait, balance, and upper limb coordination in a group of patients with NPC1 and compare the results to age and gender matched controls. This is also the first study to report effect sizes in these…

Tags: 2 hydroxypropyl beta cyclodextrin, 2018, 94035-02-6 (2 hydroxypropyl beta cyclodextrin), Adolescent, Adult, Alter K, Article, balance impairment, body equilibrium, case control study, characteristics, Child, Clinical Article, clinical evaluation, Comparative Study, coordination disorder, disease severity assessment, Farhat N, Female, gait disorder, Human, Human Development, intervention study, Journal of Child Neurology, Keener L A, Male, molecular stability, motion analysis system, Neurologic Examination, Niemann Pick disease, NIH NPC Neurologic Severity Scale, NPC, outcome assessment, performance, Porter F, Preschool Child, Priority Journal, Research, Retrospective Study, Sansare A, School Child, scoring system, spatiotemporal analysis, stabilography, Stanley C, tone and motor problems, Trajectory, Upper limb, vts 270, Young Adult, Zampieri C

Cannabis Use in Children With Pantothenate Kinase-Associated Neurodegeneration

BACKGROUND: Pantothenate kinase-associated neurodegeneration is characterized by severe, progressive dystonia. This study aims to describe the reported usage of cannabis products among children with pantothenate kinase-associated neurodegeneration.…

Tags: 2019, Children, Developmental Disability, Dystonia, February 2020 List, Freed A, Gregory A, Hayflick S J, Hogarth P, Journal of Child Neurology, Pediatric, Rai P, Roberts C, Treatment, Wakeman K, Wilson J L

A Prospective, Crossover Survey Study of Child- and Proxy-Reported Quality of Life According to Spinal Muscular Atrophy Type and Medical Interventions

BACKGROUND: Spinal muscular atrophy is an autosomal-recessive, progressive neuromuscular disease associated with extensive morbidity. Children with spinal muscular atrophy have potentially increased life spans due to improved nutrition, respiratory…

Tags: 2020, April 2020 List, child neurology, family impact, Halanski M A, Hanna R, Hetzel S, Journal of Child Neurology, Patient-reported Outcomes, Patterson K, pediatric palliative, Quality Of Life, Schroth M, Schultz M, Spinal Muscular Atrophy, Sund S, Weaver M S, Yuroff A

Browse Items (36 total)