Browse Items · Pediatric Palliative Care Library

Morbidity and mortality in medium chain acyl coenzyme A dehydrogenase deficiency

Medium chain acyl coenzyme A dehydrogenase (MCAD) deficiency presents with episodic fasting, hypoketotic hypoglycaemia, and coma. It is known to be potentially lethal, but the outlook for survivors is thought to be good. We reassessed all patients…

Studies on nutrition in severely neurologically disabled children in an institution

Severe neurological handicaps in children are frequently accompanied by growth retardation. We have studied 13 severely neurologically impaired children in an institution to see if their poor growth was related to a low intake of energy and…

Use of melatonin in the treatment of paediatric sleep disorders

A group of Vancouver health professionals, including the authors, have studied the use of oral melatonin in the treatment of chronic sleep disorders in children with disabilities since the Fall of 1991. This review article is based on the first 100…

Tags: 1996, Administration, Adolescence, Adult, Backlog, Child, Chronic Disease, Disabled Persons, Human, Infant, Jan JE, Journal Article, Journal Of Pineal Research, Melatonin/ae [Adverse Effects], Melatonin/tu [Therapeutic Use], O'Donnell ME, Oral, Preschool, Sleep Disorders/dt [Drug Therapy]

Reduced life expectancy in 40 cases of early onset cerebellar ataxia with retained tendon reflexes: a population-based study

A survival analysis of 40 cases of early onset cerebellar ataxia (EOCA) with retained tendon reflexes was performed. They represent all cases of EOCA diagnosed between 1945 and 1990 among residents of a defined area of Northwestern Italy, followed up…

Caregivers' perceptions following gastrostomy in severely disabled children with feeding problems

Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is…

Status epilepticus in children: aetiology, treatment, and outcome

This retrospective study includes 65 children treated for status epilepticus at Tampere University Hospital in Finland. Aetiology of the condition, effectiveness of the treatment protocol, including short barbiturate anaesthesia to prevent prolonged…

Tags: 1997, Adolescence, Age Distribution, Anesthetics, Anticonvulsants, Backlog, Barbiturates/ad [Administration & Dosage], Chi-Square Distribution, Child, Developmental Medicine & Child Neurology, Diazepam/ad [Administration & Dosage], Drug Administration Schedule, Electroencephalography, Encephalitis/co [Complications], Eriksson KJ, Female, Follow-up Studies, Human, Infant, Intravenous/ad [Administration & Dosage], Journal Article, Koivikko MJ, Male, Meningitis, Nervous System Diseases/ep [Epidemiology], Neuropsychological Tests, Non-U.S. Gov't, Preschool, Prevalence, Retrospective Studies, Risk Factors, Septic/co [Complications], Sex Distribution, Shock, Status Epilepticus/di [Diagnosis], Status Epilepticus/dt [Drug Therapy], Status Epilepticus/ep [Epidemiology], Status Epilepticus/et [Etiology], Streptococcal Infections/co [Complications], Support, Time Factors, Treatment Outcome, Viral/co [Complications]

Sleep problems in children with Sanfilippo syndrome.

Sanfilippo syndrome is a rare degenerative disorder which has severe intellectual and behavioural sequelae, commonly including sleep problems. A parental questionnaire was used to gather information on the sleep patterns of 80 children with…

Sleep abnormalities in patients with severe cerebral palsy

The all-night polysomnographic findings of nine patients with spastic quadriparesis (mean age 36.7 months) were analysed retrospectively and compared with those of nine age-matched controls (mean age 37.4 months). The cerebral palsy group had…

Tags: 1994, Backlog, Cerebral Palsy/co [Complications], Child, Developmental Medicine & Child Neurology, Electroencephalography, Gibbons VP, Human, Infant, Journal Article, Kotagal S, Preschool, Seizures/co [Complications], Sleep Apnea Syndromes/di [Diagnosis], Sleep Apnea Syndromes/et [Etiology], Sleep Disorders/di [Diagnosis], Sleep Disorders/et [Etiology], Stith JA

Nutrition-related growth failure of children with quadriplegic cerebral palsy

Growth failure and nutritional status were evaluated in 142 children with quadriplegic cerebral palsy, aged between two and 18 years. Linear growth was assessed by upper-arm and lower-leg lengths: both means were significantly reduced. Mean…

Effects of sudden infant death on bereaved siblings: a comparative study

This study investigated behavioural problems (as rated by mothers) in 38 children who had been suddenly bereaved of an infant sibling between 3 and 27 months previously. These children were compared with 40 children matched on age, gender, family…

Assessment of nurses' judgement for analgesic requirements of postoperative children

Over the last 5-10 years, there has been significant growth in the knowledge and strategies of pain management in children. Investigations are required to discern whether concomitant improvements in clinical practice have occurred. The purpose of…

Tags: 1996, Acetaminophen/administration & dosage/therapeutic use, Analgesics, Backlog, Child, Female, Humans, Journal Article, Journal Of Clinical Pharmacy And Therapeutics, Male, Non-Narcotic/administration & dosage/therapeutic use, Nursing Assessment, Pain, Postoperative/drug therapy/psychology, Preschool, Romsing J, Suppositories, Tonsillectomy

Siblings of a child with cancer

A total of 21 healthy siblings were interviewed about their experiences when a brother or sister is diagnosed with cancer. Information about the illness, opinions about who should inform siblings, social support, specific worries and worst memories…

Epidural analgesia for postoperative pain control in children

Ninety-eight continuous postoperative epidurals were administered to 87 children. The patients were divided into two groups: group I included 63 cases in which a 0.0625-0.25% solution of bupivacaine was continuously administered; group II included 35…

Variables influencing end-of-life care in children and adolescents with cancer

BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for…

Survival rates among children with severe neurologic disabilities

BACKGROUND: This study was done to determine survival rates in subpopulations of severely neurologically disabled children who reside in pediatric skilled nursing facilities and to compare these survival rates with those in previously published…

Serious adverse events after measles-mumps-rubella vaccination during a fourteen-year prospective follow-up

BACKGROUND: Several disorders have been attributed to measles-mumps-rubella (MMR) vaccination during the past decade. The aim of this prospective follow-up study was to identify serious adverse events causally related to MMR vaccination. METHODS:…

Health status of bereaved parents

Forty-seven mothers and 33 fathers, representing 48 families, participated in a propective longitudinal study of the effects on family members of a child's dying. The purpose of this article is to describe parents' health during the terminal illness…

Progressive sensorineural hearing loss in children with mitochondrial encephalomyopathies

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…

Multiple micronutrient deficiencies in a child fed an elemental formula

Oropharyngeal dysfunction and gastroesophageal dysmotility are present in girls and women with Rett syndrome

BACKGROUND: Feeding impairment frequently complicates the course of children with neurologic disorders and places them at risk for malnutrition and growth failure. Although feeding abnormalities have been reported in female patients with Rett…

Electrogastrography in gastrostomy-tube-fed children

Following gastrostomy tube placement some children develop gagging, retching, vomiting, pain, or irritability during feedings. Conventional medical management is not always successful. It is possible that intolerance of gastrostomy tube feedings…

The use of haloperidol in the agitated, critically ill pediatric patient with burns

Haloperidol has become the drug of choice for sedation of the acutely agitated, delirious adult patient in the critical care setting because of its well-documented efficacy and lack of major side effects. Its use in the critically ill pediatric…

Forgoing life-sustaining treatments: how the decision is made in French pediatric intensive care units

OBJECTIVES: The decision to forgo life support is frequently made in pediatric intensive care units (PICUs). A group of experts is currently preparing recommendations for guidelines concerning this decision-making process in France. We have performed…

Long-stay patients in the pediatric intensive care unit

OBJECTIVE: Length of stay in the pediatric intensive care unit (PICU) is a reflection of patient severity of illness and health status, as well as PICU quality and performance. We determined the clinical profiles and relative resource use of…

Pharmacokinetics of continuous infusions of fentanyl in critically ill children

OBJECTIVE: To determine the pharmacokinetics of fentanyl when used as a long-term continuous infusion for sedation/analgesia in mechanically ventilated critically ill infants and children. DESIGN: Prospective, case series. SETTING: A university…

Experiences of mothers in five countries whose child died of cancer

Although increasing attention is being focused on the emotional aspects of caring for dying children and their families, few research reports concentrate on the experiences of mothers, particularly in different countries. This article describes the…

Oral methadone for the treatment of severe pain in hospitalized children: a report of five cases

OBJECTIVE: Pain relief is still inadequate in many hospitalized patients, especially children in whom suboptimal use of analgesic drugs is still common. In the past 2 years, oral methadone has been used extensively in our institution for treating…

Pain management in children

Interest in the management and study of pain in children has increased in recent years. A range of techniques appropriate to children with different developmental levels is now available for the assessment of various aspects of childhood pain. A…

Tags: 1991, Anti-Inflammatory Agents, Backlog, British Medical Bulletin, Child, Goldman A, Humans, Infant, Journal Article, Lloyd-Thomas AR, Narcotics/therapeutic use, Neoplasms/complications, Newborn, Non-Steroidal/therapeutic use, Pain, Pain Measurement/methods, Pain/drug therapy/etiology, Postoperative/drug therapy, Preschool

The natural history of degenerative ataxia: a retrospective study in 466 patients

The aim of the present study was (i) to compare disease progression and survival in different types of degenerative ataxia, and (ii) to identify variables that may modify the rate of disease progression. We included patients suffering from…

Ventilatory effects of morphine, pethidine and methadone in children

The ventilatory effects of single i.v. doses of morphine 0.1 mg kg-1, pethidine 0.67 mg kg-1 and methadone 0.1 mg kg-1 were compared after ophthalmic surgery in an open, randomized study in 30 children aged 3-8 yr. Ventilatory changes after each drug…

Concurrent validity of the Functional Independence Measure for Children (WeeFIM) and the Pediatric Evaluation of Disabilities Inventory in children with developmental disabilities and acquired brain injuries

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…

Adaptational process of parents of pediatric oncology patients

This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus…

Pain variations during cancer treatment in children: a descriptive survey

Structural interviews were conducted with 66 children and their families to investigate how the experience of pain varied during cancer treatment. At diagnosis, 49% experienced cancer-related pain. Intense pain was more common at the beginning of…

Measuring parental grief after childhood cancer: potential use of the SCL-90R

To contribute to a better understanding of the utility of the Symptom Checklist-90-Revised (SCL-90R; L. Derogatis, 1983) with bereaved samples, an exploratory factor analysis was conducted on SCL-90R responses of 97 parents 2 years after the death of…

Assessment of need for a children's hospice program

Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide…

Tags: 1996, Adolescent, Backlog, Canada, Child, Child Health Services, Davies B, Death, Death studies, Grief, Health Services Needs And Demand, Hospice Care, Humans, Journal Article, PPC Book Chapter 2011 (Kim Widger), Preschool, Program Development

Bereavement and mourning in pediatric rehabilitation settings

Developmental changes in children's acquisition of death concepts and in their emotional reactions are reviewed. Moderating variables that may affect the nature of grieving processes after parental or sibling death are discussed, including…

Tags: 1993, Attitude To Death, Backlog, Bereavement, Brain Injuries, Child, Death studies, Donders J, Hospitalized, Humans, Journal Article, Male, Parents, Preschool, Rehabilitation Centers, sibling bereavement, Sibling Relations, United States

Meeting the bereavement needs of kids in patient/families--not just playing around

Children grieve differently than adults. Although the unit of care in hospice is the patient and family, emphasis is often on the grown members of the family and the anticipatory grief and bereavement needs of children and adolescents are sometimes…

Efficacy and optimal dose of daily polyethylene glycol 3350 for treatment of constipation and encopresis in children

OBJECTIVE: To determine efficacy, safety, and optimal dose of a laxative, polyethylene glycol (PEG) 3350, in children with chronic constipation. STUDY DESIGN: Children with chronic constipation (n = 24) were treated with PEG for 8 weeks at an initial…

Cyclic administration of pamidronate in children with severe osteogenesis imperfecta

BACKGROUND: Severe osteogenesis imperfecta is a disorder characterized by osteopenia, frequent fractures, progressive deformity, loss of mobility, and chronic bone pain. There is no effective therapy for the disorder. We assessed the effects of…

Disorders of movement in Leigh syndrome

Leigh syndrome (LS) is the clinical prototype of a genetically-determined mitochondrial encephalopathy. Twenty-two of 34 patients with LS had evidence of a movement disorder (MD). Dystonia, the most common MD, was present in 19 cases, rigidity in 4,…

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