Browse Items · Pediatric Palliative Care Library

A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care

Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of…

Tags: 2021, concurrent hospice care, Constipation, Cozad MJ, Fornehed MLC, Hinds PS, January 2022 List, Journal Of Hospice & Palliative Nursing, Keim-Malpass J, Lindley LC, Mack JW, Medicaid, pediatric end of life, Pediatric Hospice Care, Qualls K, Stone W, Svynarenko R

Gastrointestinal Symptoms in Children With Life-Limiting Conditions Receiving Palliative Home Care

Context: Children with life-limiting diseases suffer from gastrointestinal (GI) symptoms. Since the introduction of specialized palliative home care (SPHC) in Germany, it is possible to care for these children at home. In phase 1 of care the aim is…

Incontinence and psychological symptoms in individuals with Mowat-Wilson Syndrome

Background: Mowat-Wilson Syndrome (MWS) is caused by deletion/mutation of the ZEB2 gene on chromosome 2q22. MWS is characterized by a distinctive facial appearance, severe intellectual disability and other anomalies, e.g. seizures and/or Hirschsprung…

Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities

Carnitine is an essential nutrient for the mitochondrial transport of fatty acids. Carnitine deficiency causes a variety of symptoms in multiple organs. Patients with severe motor and intellectual disabilities often have carnitine deficiency. This…

Tags: 102767-28-2 (levetiracetam), 1069-66-5 (valproic acid), 1309-48-4 (magnesium oxide), 1317-74-4 (magnesium oxide), 14093-02-8 (iron), 14378-32-6 (zinc), 146-22-5 (nitrazepam), 1622-61-3 (clonazepam), 2017, 22316-47-8 (clobazam), 298-46-4 (carbamazepine), 461-06-3 (carnitine), 50-06-6 (phenobarbital), 53858-86-9 (iron), 541-15-1 (carnitine), 56-99-5 (carnitine), 57-30-7 (phenobarbital), 57-88-5 (cholesterol), 59-30-3 (folic acid), 6484-89-5 (folic acid), 68291-97-4 (zonisamide), 7439-89-6 (iron), 7440-66-6 (zinc), 7782-49-2 (selenium), 8028-68-0 (phenobarbital), 8047-84-5 (carbamazepine), 84057-84-1 (lamotrigine), 99-66-1 (valproic acid), acute brain disease, Adult, albumin, albumin blood level, anticonvulsant therapy, Aomatsu T, Article, bacterial meningitis, bed rest, body mass, brain infarction, carbamazepine/dt [Drug Therapy], carnitine, carnitine deficiency, carnitine deficiency/dt [Drug Therapy], carnitine/dt [Drug Therapy], Cerebral Palsy, Child, cholesterol blood level, cholesterol/ec [Endogenous Compound], Clinical Article, Clinical Trial, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Constipation, constipation/dt [Drug Therapy], constipation/pc [Prevention], Controlled Study, copper blood level, cupric ion/ec [Endogenous Compound], diet supplementation, Disease Severity, Endogenous Compound, enema/dt [Drug Therapy], enteric feeding, epilepsy/dt [Drug Therapy], Female, folic acid, folic acid blood level, folic acid/ec [Endogenous Compound], Gene Expression, groups by age, Hospital, Human, Human Tissue, infantile spasm, Inoue K, Intellectual Impairment, iron blood level, iron/ec [Endogenous Compound], Journal of Clinical Biochemistry and Nutrition, lamotrigine/dt [Drug Therapy], levetiracetam/dt [Drug Therapy], magnesium oxide/dt [Drug Therapy], Male, Medical Record Review, Middle Aged, motor dysfunction, Murata S, NCL3, neuronal ceroid lipofuscinosis, nitrazepam/dt [Drug Therapy], Pelizaeus Merzbacher disease, Pelizaeus- Merzbacher disease, periventricular leukomalacia, pharmacologic intervention, phenobarbital/dt [Drug Therapy], prealbumin, prealbumin/ec [Endogenous Compound], Preschool Child, Retrospective Study, School Child, selenium blood level, selenium/ec [Endogenous Compound], sex difference, Tamai H, trace element, Tuberous Sclerosis, valproic acid, valproic acid/dt [Drug Therapy], West syndrome, Yoden A, Young Adult, zinc/ec [Endogenous Compound], zonisamide/dt [Drug Therapy]

Feed-induced Dystonias in Children with Severe Central Nervous System Disorders

Dystonias can arise from any painful stimuli in neurologically disabled children. Classically, feed-induced dystonias from mediastinal pain due to severe gastroesophageal reflux disease are described as Sandifer spasm. We report a case series of 12…

Tags: 1134-47-0 (baclofen), 2017, acquired brain injury, Adolescent, Article, Baclofen/dt [drug Therapy], baclofen/tl [Intrathecal Drug Administration], Campbell D I, Case Study, central nervous system disease, Cerebral Palsy, Child, Clinical Article, Constipation, Dystonia, dystonia/dt [Drug Therapy], feed induced dystonia, feed induced dystonia/dt [Drug Therapy], feeding difficulties, Female, Gastroesophageal Reflux, Gastroscopy, GERD, Human, Hydrocephalus, Hyperglycinemia, Infant, infantile spasm, intestinal dysmotility, intestine motility, Intestine Obstruction, Journal Of Pediatric Gastroenterology And Nutrition, Male, microcephaly, Mordekar S R, motor dysfunction, MPSIII, onset age, Parenteral Nutrition, Percutaneous Endoscopic Gastrostomy, peristalsis, pharmacologic intervention, Practice Guideline, Preschool Child, Priority Journal, reflux esophagitis, Retrospective Study, Rett syndrome, Sanfilippo syndrome, School Child, tone and motor problems, total parenteral nutrition, Velayudhan M, West syndrome

Gastrointestinal and nutritional problems occur frequently throughout life in girls and women with Rett syndrome

OBJECTIVE: We conducted a nationwide survey to determine the prevalence of common gastrointestinal and nutritional disorders in Rett syndrome (RTT) based on parental reporting and related the occurrence of these problems to age and methyl-CpG-binding…

Tags: 2012, Adolescent, Adult, Age Factors, Annese F, Barrish J O, Bone Diseases/complications/epidemiology, Caeg E, characteristics, Child, Child Preschool, Child Nutrition Disorders/epidemiology/etiology/genetics, Constipation, dysmotility, Dysphagia, feeding difficulties, Female, Gastrointestinal Diseases/epidemiology/etiology/genetics, gastrointestinal dysmotility, Geerts S, Glaze D G, Growth Disorders/epidemiology/etiology/genetics, Health Surveys, Humans, Infant, Infant Nutrition Disorders/epidemiology/etiology/genetics, Journal Of Pediatric Gastroenterology And Nutrition, Lane J B, Lee H S, Male, McNair L, Methyl-CpG-Binding Protein 2/genetics, Motil K J, Mutation, Neul J L, Nutrition Disorders/epidemiology/etiology/genetics, Parents, Percy A K, Prevalence, Rett syndrome, Rett Syndrome/complications/genetics, Skinner S A, Surveys And Questionnaires, Trajectory, Young Adult

Constipation in epidermolysis bullosa: successful treatment with a liquid fiber-containing formula

In epidermolysis bullosa (EB), chronic constipation, painful defecation, and fecal impaction frequently contribute to malnutrition and growth failure. Standard treatments for constipation, such as increased intake of conventional dietary fiber and…

Gastrointestinal complications of epidermolysis bullosa in children

Background Epidermolysis bullosa (EB) is a group of inherited disorders characterized by skin and mucous membrane fragility. Gastrointestinal (GI) complications have been described in many types of EB and are responsible for significant morbidity.…

A national survey of Rett syndrome: age, clinical characteristics, current abilities, and health

As part of a wider study to investigate the behavioral phenotype of a national sample of girls and women with Rett syndrome (RTT) in comparison to a well-chosen contrast group and its relationship to parental well-being, the development, clinical…

Tags: 2015, American Journal of Medical Genetics Part A, bowel problems, breathing difficulties, characteristics, Cianfaglione R, Clarke A, Constipation, Epilepsy, feeding difficulties, Felce D, gastrointestinal problems, Hastings R P, Kerr M, Oliver C, Rett syndrome, tone and motor problems, Trajectory, weight

Findings from a multidisciplinary clinical case series of females with Rett syndrome

Systematic data from a multidisciplinary clinical assessment of a large series of females with Rett syndrome (RS; n=87) is presented. Participants' ages ranged from 2 years 1 month to 44 years 10 months. Areas assessed included oromotor skills,…

Tags: 2003, breathing difficulties, Cass Hilary, characteristics, Charman T, Constipation, Developmental Medicine and Child Neurology, feeding difficulties, Owen L, Reilly S, Rett syndrome, sleep disturbance, Slonims V, Trajectory, Weekes L, Wigram T, Wisbeach A

Behavioural phenotype of Cornelia de Lange syndrome

A postal questionnaire was used to study 49 individuals with Cornelia de Lange syndrome (including both the classical and the mild forms) to ascertain behavioural phenotype. Ages ranged from early childhood to adulthood (mean age, 10.2 years; SD,…

Tags: 1999, Aggression, Archives of Disease in Childhood, Behavior, Berney T P, Burn J, characteristics, Constipation, De Lange syndrome, feeding difficulties, hyperactivity, Ireland M, self-injury, sleep disturbance, tone and motor problems, Trajectory

Lower Urinary Tract Symptoms and Incontinence in Children with Pompe Disease

BACKGROUND: Pompe disease (PD) is a disorder of lysosomal glycogen storage. The introduction of enzyme replacement therapy (ERT) has shifted the focus of care from survival to quality of life. The presence of lower urinary tract symptoms (LUTS) and…

Tags: 2016, Ajay D, Austin S, characteristics, Constipation, glycogen storage disease type II, JIMD Reports, Kishnani P, McNamara E R, Trajectory, urinary incontinence, Wiener J S

An interdisciplinary care model to establishing palliative care for children and adolescents with cancer

Background/Objectives: Palliative care for Pediatric cancer patients and their families includes the relief of symptom and improvement of quality of life at any and all stages of disease. There care are most effectively provided by an…

Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients

Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per…

Use of opioids in palliative care of children with advanced cancer

Introduction Despite advances in the treatment of cancer in paediatric patients, 15% of children die from the illness progression in Chile, and pain is the most significant symptom in advanced stages. Although the World Health Organization guidelines…

Late Effects of Treatment and Palliative Care

Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high…

Tags: 147-94-4 (cytarabine), 154-93-8 (carmustine), 15475-56-6 (methotrexate), 15663-27-1 (cisplatin), 2017, 26035-31-4 (cisplatin), 59-05-2 (methotrexate), 69-74-9 (cytarabine), 7413-34-5 (methotrexate), 96081-74-2 (cisplatin), Advance Care Planning, Appetite Disorder, Banerjee A, Bone Density, Brain Tumor, Carmustine, Central Nervous System Tumor, Chang E, Childhood Cancer Survivor, Cisplatin, Constipation, Corticosteroid, Cytarabine, Diarrhea, Dyspnea, Endocrine Disease, Fatigue, Genetic Polymorphism, Goldsby R, Health Care Quality, Human, Incidence, Medical Decision Making, Medulloblastoma, Methotrexate, Morbidity, Mortality Rate, Mueller S, Nausea And Vomiting, Neuroectoderm Tumor, Neuropathic Pain, Neuropsychological Test, November 2017 List, Pain Assessment, Palliative Therapy, Patient Care, Pediatric Oncology, Phase 1 Clinical Trial (topic), Priority Journal, Psychosocial Disorder, Quality Of Life, Questionnaire, Radiation Injury, Respiration Depression, Seizure, Signal Transduction, Spasticity

Blended Foods For Tube-fed Children: A Safe And Realistic Option? A Rapid Review Of The Evidence

With the growing number of children and young people with complex care needs or life-limiting conditions, alternative routes for nutrition have been established (such as gastrostomy feeding). The conditions of children and young people who require…

Families Are Not The Barrier: Evaluating Attitudes Toward Early Integration Of Palliative Care In Pediatric Hematopoietic Stem Cell Transplant

Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT).…

Assessing The Presence And Severity Of Constipation With Plain Radiographs In Constipated Palliative Care Patients.

BACKGROUND:
Palliative care guidelines recommend plain radiographs to assess constipation based on the presumption that visible fecal shadowing represents stool retention. Despite this, using plain radiographs in this way is not well…

Tags: 2016, Australia, Blight A, Byfieldt N, Clark K, Constipation, Currow DC, Gastroenterology, Journal of Palliative Medicine, Lam LT, May 2016 List, Palliative And Supportive Care, Quinn J, Talley NJ

Browse Items (19 total)