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Amar M Wahid, Colin V Powell, Ieuan H Davies, Jennifer A Evans, Huw R Jenkins
Gastrointestinal dysmotility is common in children and young people with neurodisabling conditions. In this article we seek to highlight the increasing difficulties faced by paediatricians in managing intestinal failure in this patient group. It is becoming clear that, as the median age for survival increases, intestinal failure is a significant problem, and can in some cases become life-limiting. The ethical issues around starting children with life-limiting conditions on parenteral nutrition (PN) are extremely complicated, not least because we are ignorant of the mechanism of intestinal failure in these children, and indeed, which of these children might be able to return to enteral feeding after a period of PN...
November 11, 2016: Archives of Disease in Childhood
Anton Rodney Miller, Peter Rosenbaum
Chronic health conditions are often associated with what is termed disability. Traditional thinking has focused on diagnosis and treatment of chronic diseases and disorders, with less attention to people's functional abilities and their contextual determinants. Understanding all of these factors is integral to addressing the predicaments and needs of persons with chronic conditions. However, these complementary yet distinct "worldviews" reflected in what we call disease and disability perspectives often remain, at best, only vaguely articulated...
2016: Frontiers in Public Health
J McAnuff, R Brooks, C Duff, M Quinn, J Marshall, N Kolehmainen
There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritized these for improvement: self-care, friends and social, and physical activity ranked the highest; (3) identified 11 potential intervention categories for targeting the top priority, self-care, through eight hypothesized change mechanisms and agreed for the interventions to be delivered as a 'Menu of Interventions' for personalized self-care support; and (4) designed a before-and-after mixed methods feasibility study to evaluate the Menu with children and young people (0-12 years) and their parents and therapists...
October 21, 2016: Child: Care, Health and Development
Paul Rinne, Michael Mace, Tagore Nakornchai, Karl Zimmerman, Susannah Fayer, Pankaj Sharma, Jean-Luc Liardon, Etienne Burdet, Paul Bentley
Motor-training software on tablets or smartphones (Apps) offer a low-cost, widely-available solution to supplement arm physiotherapy after stroke. We assessed the proportions of hemiplegic stroke patients who, with their plegic hand, could meaningfully engage with mobile-gaming devices using a range of standard control-methods, as well as by using a novel wireless grip-controller, adapted for neurodisability. We screened all newly-diagnosed hemiplegic stroke patients presenting to a stroke centre over 6 months...
2016: PloS One
Andrea L Conroy, Michael Hawkes, Chloe R McDonald, Hani Kim, Sarah J Higgins, Kevin R Barker, Sophie Namasopo, Robert O Opoka, Chandy C John, W Conrad Liles, Kevin C Kain
Background.  Host responses to infection are critical determinants of disease severity and clinical outcome. The development of tools to risk stratify children with malaria is needed to identify children most likely to benefit from targeted interventions. Methods.  This study investigated the kinetics of candidate biomarkers of mortality associated with endothelial activation and dysfunction (angiopoietin-2 [Ang-2], soluble FMS-like tyrosine kinase-1 [sFlt-1], and soluble intercellular adhesion molecule-1 [sICAM-1]) and inflammation (10 kDa interferon γ-induced protein [CXCL10/IP-10] and soluble triggering receptor expressed on myeloid cells-1 [sTREM-1]) in the context of a randomized, double-blind, placebo-controlled, parallel-arm trial evaluating inhaled nitric oxide versus placebo as adjunctive therapy to parenteral artesunate for severe malaria...
September 2016: Open Forum Infectious Diseases
Marjolijn Ketelaar, Aline Bogossian, Michael Saini, Anne Visser-Meily, Lucyna Lach
The importance of the family environment for the development of children with neurodisabilities is undisputed. The objective of this study is to describe how family environment has been measured in research on families of children with neurodisabilities, in order to support researchers and clinicians to select appropriate methods for use. A three-step approach was used and 13 measures of family environment were identified within 77 studies. Five measures were used most commonly across a majority of studies (n=50)...
October 3, 2016: Developmental Medicine and Child Neurology
Paramala J Santosh, Laura Bell, Federico Fiori, Jatinder Singh
Antipsychotic (ATP) prescription rates have increased in children and adolescents despite concern regarding the safety and effectiveness of ATP usage in community populations. Rising safety concerns and uncertainty regarding ATP effectiveness in children stress the need for improvement in routine clinical outcome monitoring and research. Due to the growing number of children exposed to atypical ATPs, studies assessing the risk/benefit ratio of administering ATPs in this age group-especially in off-label conditions-become of high importance...
September 8, 2016: Journal of Child and Adolescent Psychopharmacology
V E Hudson, A Elniel, I Ughratdar, B Zebian, R Selway, J P Lin
: Cochlear implants for sensorineural deafness in children is one of the most successful neuromodulation techniques known to relieve early chronic neurodisability, improving activity and participation. In 2012 there were 324,000 recipients of cochlear implants globally. AIM: To compare cochlear implant (CI) neuromodulation with deep brain stimulation (DBS) for dystonia in childhood and explore relations between age and duration of symptoms at implantation and outcome...
August 3, 2016: European Journal of Paediatric Neurology: EJPN
Jonathan W Davis, David Odd, Sally Jary, Karen Luyt
OBJECTIVE: Very low birthweight (VLBW; <1500 g) infants with late-onset sepsis (LOS) have an increased risk of neurodisability. Care bundles to reduce bloodstream infections in neonatal intensive care unit (NICU) are effective in reducing LOS. Our aim was to determine if a sepsis reduction bundle introduced through a quality improvement project would impact neurodevelopmental outcomes in VLBW infants. DESIGN: Cohort study. SETTING: Level 3 regional NICU in the South West of England...
August 18, 2016: Archives of Disease in Childhood. Fetal and Neonatal Edition
A P Hackett, R E Trinick, K Rose, B F Flanagan, P S McNamara
BACKGROUND: Aspiration lung disease (ALD) is a common cause of respiratory morbidity in children and adults with severe neurodisability (sND). Recent studies suggest that chronic microaspiration of gastric contents is associated with mild rather than low, airway acidification. We investigated inflammatory responses to infection by airway epithelial cells (AECs) exposed to weakly acidic media. METHODS: Using pH measurements from children with sND at high risk of ALD as a guide, we incubated AECs in weakly acidic (pH5...
2016: Respiratory Research
Eugen Boltshauser
No abstract text is available yet for this article.
August 2016: Neuropediatrics
Andrea L Conroy, Michael Hawkes, Robyn E Elphinstone, Catherine Morgan, Laura Hermann, Kevin R Barker, Sophie Namasopo, Robert O Opoka, Chandy C John, W Conrad Liles, Kevin C Kain
Background.  Acute kidney injury (AKI) is a well recognized complication of severe malaria in adults, but the incidence and clinical importance of AKI in pediatric severe malaria (SM) is not well documented. Methods.  One hundred eighty children aged 1 to 10 years with SM were enrolled between 2011 and 2013 in Uganda. Kidney function was monitored daily for 4 days using serum creatinine (Cr). Acute kidney injury was defined using the Kidney Disease: Improving Global Outcomes (KDIGO) guidelines. Blood urea nitrogen (BUN) and Cr were assessed using i-STAT, and cystatin C (CysC) was measured by enzyme-linked immunosorbent assay...
March 2016: Open Forum Infectious Diseases
Sonal Kansra, Kelechi Ugonna
Children with neurodisability have an increased prevalence of respiratory symptoms and morbidity. Several underlying physiological impairments and coexistent problems, like aspiration, make these children vulnerable to respiratory difficulties. The management of these respiratory problems is aimed at improving the quality of life, reducing the risk of exacerbations and further lung damage. This is based on identifying and, where possible, modifying physiological impairments, managing any exacerbating factors and proactive treatment of any complications...
October 2016: Archives of Disease in Childhood. Education and Practice Edition
Jonathan M Dunne, David Wertheim, Paul Clarke, Olga Kapellou, Philippa Chisholm, James P Boardman, Divyen K Shah
BACKGROUND AND HYPOTHESIS: Prolonged electroencephalographic (EEG) discontinuity has been associated with poor neurodevelopmental outcomes after perinatal asphyxia but its predictive value in the era of therapeutic hypothermia (TH) is unknown. In infants undergoing TH for hypoxic-ischaemic encephalopathy (HIE) prolonged EEG discontinuity is associated with cerebral tissue injury on MRI and adverse neurodevelopmental outcome. METHOD: Retrospective study of term neonates from three UK centres who received TH for perinatal asphyxia, had continuous two channel amplitude-integrated EEG with EEG for a minimum of 48 h, brain MRI within 6 weeks of birth and neurodevelopmental outcome data at a median age of 24 months...
April 21, 2016: Archives of Disease in Childhood. Fetal and Neonatal Edition
Cally J Tann
No abstract text is available yet for this article.
July 2016: Acta Paediatrica
Deepa Jeevanantham, Doreen Bartlett
PURPOSE: Classifying children with heterogeneous health conditions is challenging. The purposes of this perspective are to explore the prevailing classifications in children with the three selected neurodisabilities using the underlying framework of ICF/ICF-CY, explore the utility of the identified classifications, and make recommendations aimed at improving classifications. METHODS: A literature search on six databases and Google was conducted. Articles published between the years 2000 and 2013 were included if they provided information on classification of cerebral palsy (CP), and/or developmental coordination disorder (DCD) and/or autism spectrum disorders (ASD)...
April 8, 2016: Developmental Neurorehabilitation
Rebecca West, Dipanker Dass, Santosh Mordekar, David Campbell, Richard Lindley
This case series describes our experience in managing four children with complex neurodisability, feed intolerance and pneumatosis coli. In all four cases their symptoms and feed tolerance were substantially improved by the formation of a laparoscopically assisted defunctioning ileostomy. We describe our current management strategy and believe this is a promising treatment for such patients that can reduce long term dependence on parenteral nutrition, although we acknowledge that there is a long term risk of disuse colitits in the defunctioned bowel...
April 4, 2016: Journal of Pediatric Gastroenterology and Nutrition
Farrah Jones, Robert H Warren
The pulmonary service at ACH is available 24 hours a day for the primary care physician who has the potential to be an important member of the team caring for these children. Initial evaluation and management utilizing the concepts presented in this article may allow the acute illness to be handled at home without the need for referral to ACH. When that is accomplished, not only does the child benefit but the entire family benefits by not having the total disruption that occurs with emergent trips to ACH and especially when hospitalization ensues...
March 2016: Journal of the Arkansas Medical Society
Josephine Anne Spring
AIM: A total of 14 Scandinavian therapy gardens were visited and data collected on plantings, therapeutic activities and assessment of effectiveness in Spring 2014. METHODOLOGY: Data were gathered by a questionnaire and by interviewing staff in Sweden, Denmark and Norway. The data collection structured proforma used the post-occupation assessment method. RESULTS: Gardening promoted physical movement, presented cognitive challenges and provided opportunities for social participation...
April 2016: Neurodegenerative Disease Management
A M Ritzema, L M Lach, P Rosenbaum, D Nicholas
BACKGROUND: About my Child, 26-item version (AMC-26) was developed as a measure of child health 'complexity' and has been proposed as a tool for understanding the functional needs of children and the priorities of families. METHODS: The current study investigated the reliability and validity of AMC-26 with a sample of caregivers of children with neurodevelopmental disorders (NDD; n = 258) who completed AMC-26 as part of a larger study on parenting children with NDD...
May 2016: Child: Care, Health and Development
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