Background: Rett syndrome (RTT) and autism disorder (AD) are 2 neurodevelopmental disorders of early life that share phenotypic features, one being hand stereotypies. Distinguishing RTT from AD often represents a challenge, and given their distinct…
Frequency and type of incontinence and its association with other variables were assessed in females with Rett Syndrome (RS) ( = 63), using an adapted Dutch version of the 'Parental Questionnaire: Enuresis/Urinary Incontinence' (Beetz et al. 1994).…
Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful…
Purpose: In girls and women with Rett syndrome, we assessed the accuracy of the StepWatch Activity Monitor (TM) and investigated relationships between daily step counts, gross motor skills and age. Method: Twelve subjects (age 12.9 +/- 8.0 years)…
PURPOSE: In girls and women with Rett syndrome, we assessed the accuracy of the StepWatch Activity Monitor™ and investigated relationships between daily step counts, gross motor skills and age. METHOD: Twelve subjects (age 12.9 ± 8.0 years)…
Objective: Up to 55% of patients with Cornelia de Lange Syndrome (CdLS) experience sleep disturbance. Prior evaluation of children without CdLS with similar intellectual disability and self-injurious behavior suggests that sleep disturbances may be…
BACKGROUND:Primary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care…
BACKGROUND: Oropharyngeal dysphagia encompasses problems with the oral preparatory phase of swallowing (chewing and preparing the food), oral phase (moving the food or fluid posteriorly through the oral cavity with the tongue into the back of the…
AIM: This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services., BACKGROUND: An effective advance care planning programme involves an organizational wide…
OBJECTIVE: To assess the effectiveness and safety of melatonin in treating severe sleep problems in children with neurodevelopmental disorders. DESIGN: 12 week double masked randomised placebo controlled phase III trial. SETTING: 19 hospitals across…
There is an extensive literature on discrepancies between adult informant ratings of symptom severity on the Child Behavior Checklist and ratings by children and adolescents on the Youth Self Report. This article presents an elaboration of a caveat…
OBJECTIVES: To determine whether the recommended nutritional intake of moderately to severely neurologically impaired children is congruent with current growth parameter expectations. METHODS: Observational cross-sectional study at a children's…
Like any new specialty, paediatric palliative medicine is facing challenges as it establishes itself. While many of the required core skills have their roots in adult palliative medicine, its practitioners come from a range of paediatric backgrounds…
Palliative care provides a holistic approach to symptom relief using a multidisciplinary team approach to enhance quality of life throughout the entire course of a particular illness. The care team consists of movement disorders neurologist, a…
BACKGROUND AND PURPOSE: The purpose of this study was to evaluate the mutation status of PANK2 among Korean patients with pantothenate kinase-associated neurodegeneration (PKAN) and to document the outcome of pallidal deep brain stimulation (DBS).…
Abstract Background: The use of propofol for palliative sedation of children is not well documented. Objective: Here we describe our experience with the use of propofol palliative sedation therapy (PST) to alleviate intractable end-of-life suffering…
OBJECTIVES: To compare peer relationships among bereaved siblings and matched classmates, and to examine gender, grade level, and time since death as moderators. METHODS: Families were recruited from cancer registries at four hospitals 3-12 months…
Abstract Background: People with intellectual disabilities (ID) experience many barriers in accessing quality health care for serious and terminal illness, including delayed diagnosis, as signs and symptoms of illness are misinterpreted There is…
