OBJECTIVE: Mitochondrial disorders are responsible for a variety of neurological syndromes. Specific mitochondrial DNA mutations have been identified recently in some of these rare disorders. Clinical symptoms may occur in different organs to various…
Pediatric neurologic diseases are often associated with different kinds of sleep disruption (mainly insomnia, less frequently hypersomnia or parasomnias). Due to the key-role of sleep for development, the effort to ameliorate sleep patterns in these…
The Functional Independence Measure for Children (WeeFIM) and the Pediatric Evaluation of Disability Inventory (PEDI) are the most commonly used measures of functional performance in children. The purpose of this study was to determine the concurrent…
This descriptive study used qualitative methods to look at two aspects of the search for meaning in parental bereavement--the search for cognitive mastery and the search for renewed purpose. One hundred and seventy-six bereaved parents answered…
A retrospective, qualitative, preliminary study examined if parental involvement in a life-support withdrawal (LSW) decision impacts the perceptions and adjustment of parents whose child died in a pediatric critical care unit. Participants were…
User involvement has become a central tenet of government policy regarding health and social care. Likewise, the role of 'evidence' is seen as being at the heart of effective planning and delivery of health services. (Our Healthier Nation, 1999).…
BACKGROUND: Birth defects impose substantial costs on both families and society because of medical, developmental, and special education needs. Caring for children with birth defects also may influence caregiver time and impact the family. However,…
The Netherlands is one of the very few countries that has guidelines for the practice of euthanasia. Each year there are about 9700 explicit requests for euthanasia or physician-assisted suicide (EAS), of which approximately 3600 patients are agreed…
In a single subject design, acupuncture effects on peripheral skin temperature were studied in six children with cold feet associated with cerebral palsy, progressive encephalopathy or Smith-Lemli-Opitz syndrome. Skin temperature was measured at…
The clinical course of Japanese patients with childhood and adolescent adrenoleukodystrophy (ALD) who were treated with Lorenzo's oil after the progression of early symptoms was investigated by Kaplan-Meier analyses. Many of the early symptoms,…
A boy presented at age 3.5 months with joint contractures, restlessness, and pain on handling. His skin was thickened and there were livid-red macular lesions over bony prominences. Infantile systemic hyalinosis (ISH) was diagnosed, a presumably…
AIM To detail the everyday occurrence of pain in non-communicating children with cognitive impairment. METHODS Thirty four parents of cognitively impaired verbally non-communicating children completed pain diaries over a two week period. Each day,…
BACKGROUND: Institutional review boards (IRBs) are given discretion to interpret and apply the federal regulations governing the protection of human subjects in research. OBJECTIVE: To determine the extent of the variability among different IRBs on…
Telehealth is defined as the provision of health care via telecommunications wherever individuals are geographically separated. In this literature review, we explore the role of telehealth in family care. Telehealth has not been fully examined for…
PURPOSE: Methadone is still regarded as a second line opioid for patients suffering from severe pain, and is rarely used in hospitalized patients. The infrequent use of methadone is probably due to its long plasma half-life that could lead to…
This article contextualizes an emerging issue in critical ethnography, specifically, the problem of establishing rapport and negotiating boundaries for a partial insider in a non-Western setting. A description of the author’s experiences while…
This review centers on important recent advances in the understanding of the role of glial fibrillary acidic protein in Alexander disease and of proteolipid protein in hypomyelinating disorders such as Pelizaeus-Merzbacher and spastic paraplegia. We…
