1
40
36
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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October List 2023
URL Address
<a href="http://doi.org/10.1177/08830738231172539" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/08830738231172539</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Development and Evaluation of a Child Neurology Resident Curriculum for Communication Around Serious Illness
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Journal of Child Neurology
Date
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2023
Subject
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Child; article; human; quality of life; ethics; palliative therapy; physician; clinical article; disability; Only Child; communication skill; resident; human experiment; Neurology; training; neurology; curriculum; evaluation study; residency education
Creator
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Martin JA; Sampey F; Feldman A; Silveira L; Press CA; Messer R; Barry M; Kaul P
Description
An account of the resource
Background: Communication around serious illness is a core competency for all residencies. One-fifth of neurology residencies have no curriculum. Published curricula use didactics or role-play to assess confidence performing this skill without evaluation in clinical settings. The SPIKES mnemonic (Setting, Perception, Invitation, Knowledge, Empathy, Strategy/Summary) outlines 6 evidence-based steps for communication around serious illness. It is unknown whether child neurology residents can incorporate SPIKES into communication around serious illness in clinical settings. Objective(s): To develop and evaluate a curriculum on communication around serious illness using SPIKES for child neurology residents that shows long-term skill retention in clinical settings at a single institution. Method(s): In 2019, we created a pre-post survey and skills checklist based on SPIKES, with 20 total including 10 core skills. Faculty observed residents' (n = 7) communication with families and completed both preintervention and postintervention checklists for comparison. Residents underwent training in SPIKES during a 2-hour session using didactic and coached role-play. Result(s): All (n = 7) residents completed preintervention surveys, 4 of 6 completed postintervention. All (n = 6) participated in the training session. Following the training, 75% of residents reported improved confidence in use of SPIKES, though 50% were still unsure about appropriately responding to emotions. There was improvement in all SPIKES skills, with significant improvement in 6 of 20 skills up to 1 year following training. Conclusion(s): This is the first evaluation of the implementation of a communication around serious illness curriculum for child neurology residents. We identified improved comfort with SPIKES after training. Successful acquisition and utilization of this framework in our program suggests it could be incorporated into any residency program.Copyright © The Author(s) 2023.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/08830738231172539" target="_blank" rel="noreferrer noopener">10.1177/08830738231172539</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Barry M
Child
Clinical Article
Communication Skill
Curriculum
Disability
Ethics
evaluation study
Feldman A
Human
Human Experiment
Journal of Child Neurology
Kaul P
Martin JA
Messer R
Neurology
October List 2045
Only Child
Palliative Therapy
Physician
Press CA
Quality Of Life
residency education
Resident
Sampey F
Silveira L
Training
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.1177/08830738211056779" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08830738211056779</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Decision Making for Infants With Neurologic Conditions
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Children; Disabilities; Ethics; Infant; Neonate; Quality of life
Creator
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Gerrity C; Farley S; Barks MC; Ubel PA; Brandon D; Pollak KI; Lemmon ME
Description
An account of the resource
Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudinal mixed methods study of decision making. We audio recorded family conferences as they occurred and analyzed conferences using a directed content analysis approach. We enrolled 40 infants and 61 parents who participated in 68 family conferences. Thirty-seven conferences contained a treatment decision. We identified 4 key domains of the decision-making process: medical information exchange, values-based exchange, therapeutic partnership, and integration of values into decision making. Discussion of values was typically parent initiated (n = 20, 83%); approximately one-third of conferences did not contain any discussion of parent values. Integration of family values and preferences into decision making occurred in approximately half of conferences. These findings highlight opportunities for interventions that promote values discussion and the integration of values into decision making. Copyright © The Author(s) 2022.
Identifier
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<a href="http://doi.org/10.1177/08830738211056779" target="_blank" rel="noreferrer noopener">10.1177/08830738211056779</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
April 2022 List
Barks MC
Brandon D
Children
Disabilities
Ethics
Farley S
Gerrity C
Infant
Journal of Child Neurology
Lemmon ME
Neonate
Pollak KI
Quality Of Life
Ubel PA
-
Dublin Core
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Title
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December 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1177/08830738211045238" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08830738211045238</a>
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Title
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Neuropalliative Care for Neonates
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
infant; neonate; neuropalliative care; pediatric; preterm; quality of life
Creator
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Rent SM; Bidegain M; Bost MH; Hornik C; Lemmon ME
Description
An account of the resource
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is directed toward patients and families affected by serious neurologic conditions in the antenatal and immediate newborn period. This review outlines key considerations for neurologists hoping to provide a neuropalliative care approach antenatally, in the neonatal intensive care unit, and around hospital discharge. We explore 4 core domains of neuropalliative care: (1) family-centered communication, (2) prognostication, (3) decision making, and (4) pain and symptom management. We address special considerations in care at the end of life and in varied cultural and practice contexts.
Identifier
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<a href="http://doi.org/10.1177/08830738211045238" target="_blank" rel="noreferrer noopener">10.1177/08830738211045238</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Bidegain M
Bost MH
December 2021 List
Hornik C
Infant
Journal of Child Neurology
Lemmon ME
Neonate
neuropalliative care
Pediatric
preterm
Quality Of Life
Rent SM
-
Dublin Core
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Title
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April 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2020 List
URL Address
<a href="http://doi.org/10.1177/0883073819900463" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073819900463</a>
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Title
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A Prospective, Crossover Survey Study of Child- and Proxy-Reported Quality of Life According to Spinal Muscular Atrophy Type and Medical Interventions
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child neurology; family impact; patient-reported outcomes; pediatric palliative; quality of life; spinal muscular atrophy
Creator
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Weaver M S; Hanna R; Hetzel S; Patterson K; Yuroff A; Sund S; Schultz M; Schroth M; Halanski M A
Description
An account of the resource
BACKGROUND: Spinal muscular atrophy is an autosomal-recessive, progressive neuromuscular disease associated with extensive morbidity. Children with spinal muscular atrophy have potentially increased life spans due to improved nutrition, respiratory support, and novel pharmaceuticals. OBJECTIVES: To report on the quality of life and family experience for children with spinal muscular atrophy with attentiveness to patient- and proxy-concordance and to stratify quality of life reports by spinal muscular atrophy type and medical interventions. METHODS: A prospective, crossover survey study inclusive of 58 children (26 spinal muscular atrophy type I, 23 type II, 9 type III) and their family caregivers at a free-standing Midwestern children's hospital. Twenty-eight families completed the 25-item PedsQL 3.0 Neuromuscular Module. Forty-four participants completed the 36-item PedsQL Family Impact Module and 47 completed the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire. RESULTS: The PedsQL Family Impact Module demonstrated significant differences between spinal muscular atrophy types I and II in functioning domains including physical, emotional, social, and family relations (P < .03). Child self-report and proxy report surveys demonstrated significant differences between spinal muscular atrophy types in the communication domains (P < .003). Children self-reported their quality of life higher than proxy report of child quality of life. Gastrostomy tube (P = .001) and ventilation support (P = .029) impacted proxy-reported quality of life perspectives, whereas nusinersen use did not. Spinal surgery was associated with improved parental quality of life and family impact (P < .03). CONCLUSIONS: The measurement and monitoring of quality of life for children with spinal muscular atrophy and their families represents an implementable priority for care teams.
Identifier
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<a href="http://doi.org/10.1177/0883073819900463" target="_blank" rel="noreferrer noopener">10.1177/0883073819900463</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
April 2020 List
child neurology
family impact
Halanski M A
Hanna R
Hetzel S
Journal of Child Neurology
Patient-reported Outcomes
Patterson K
pediatric palliative
Quality Of Life
Schroth M
Schultz M
Spinal Muscular Atrophy
Sund S
Weaver M S
Yuroff A
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2020 List
URL Address
<a href="http://doi.org/10.1177/0883073819890516" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073819890516</a>
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Cannabis Use in Children With Pantothenate Kinase-Associated Neurodegeneration
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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children; developmental disability; dystonia; pediatric; treatment
Creator
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Wilson J L; Gregory A; Wakeman K; Freed A; Rai P; Roberts C; Hayflick S J; Hogarth P
Description
An account of the resource
BACKGROUND: Pantothenate kinase-associated neurodegeneration is characterized by severe, progressive dystonia. This study aims to describe the reported usage of cannabis products among children with pantothenate kinase-associated neurodegeneration. METHODS: A cross-sectional, 37-item survey was distributed in April 2019 to the families of 44 children who participate in a clinical registry of individuals with pantothenate kinase-associated neurodegeneration. RESULTS: We received 18 responses (40.9% response rate). Children were a mean of 11.0 (SD 4.3) years old. The 15 respondents with dystonia or spasticity were on a median of 2 tone medications (range 0-9). Seven children had ever used cannabis (38.9%). The most common source of information about cannabis was other parents. Children who had ever used cannabis were on more tone medications, were more likely to have used opiates, were less likely to be able to roll, and less likely to sit comfortably, than children who had never used cannabis. Four children reported moderate or significant improvement in dystonia with cannabis. Other areas reported to be moderate or significantly improved were pain (n = 3), sleep (n = 4), anxiety (n = 3), and behavior (n = 2). Adverse effects included sadness (n = 1), agitation/behavior change (n = 1), and tiredness (n = 1). CONCLUSION: Cannabis use was commonly reported among children with pantothenate kinase-associated neurodegeneration whose parents responded to a survey, particularly when many other dystonia treatments had been tried. Physicians should be aware that parents may treat their child with severe, painful dystonia with cannabis. Placebo-controlled studies of products containing cannabidiol and 9-tetrahydrocannabinol are needed for pediatric tone disorders.
Identifier
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<a href="http://doi.org/10.1177/0883073819890516" target="_blank" rel="noreferrer noopener">10.1177/0883073819890516</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Children
Developmental Disability
Dystonia
February 2020 List
Freed A
Gregory A
Hayflick S J
Hogarth P
Journal of Child Neurology
Pediatric
Rai P
Roberts C
Treatment
Wakeman K
Wilson J L
-
Dublin Core
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0883073817741054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073817741054</a>
Dublin Core
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Title
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Gait, Balance, and Coordination Impairments in Niemann Pick Disease, Type C1
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
adolescent; retrospective study; priority journal; scoring system; school child; outcome assessment; preschool child; intervention study; human; article; child; female; male; adult; clinical article; young adult; comparative study; body equilibrium; stabilography; performance; neurologic examination; balance impairment; coordination disorder; gait disorder; Niemann Pick disease; 2 hydroxypropyl beta cyclodextrin; 94035-02-6 (2 hydroxypropyl beta cyclodextrin); case control study; clinical evaluation; disease severity assessment; human development; molecular stability; motion analysis system; NIH NPC Neurologic Severity Scale; research; spatiotemporal analysis; upper limb; vts 270; tone and motor problems; NPC; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Sansare A; Zampieri C; Alter K; Stanley C; Farhat N; Keener L A; Porter F
Description
An account of the resource
This is the first study to objectively measure gait, balance, and upper limb coordination in a group of patients with NPC1 and compare the results to age and gender matched controls. This is also the first study to report effect sizes in these measures. Spatiotemporal gait analysis, static and dynamic posturography, and upper limb reaching motion analysis were performed. The findings showed that the NPC1 subjects had statistically significant deficits on 12 out of the 16 parameters investigated compared to controls, and large effect sizes for all but 1 parameter. When ranking the variables in terms of the effect sizes, the top 5 included at least 1 parameter from each of the 3 motor domains investigated. These results can provide insight to clinical researchers on the selection of outcome measures for longitudinal and interventional studies.
Identifier
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<a href="http://doi.org/10.1177/0883073817741054" target="_blank" rel="noreferrer noopener">10.1177/0883073817741054</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2 hydroxypropyl beta cyclodextrin
2018
94035-02-6 (2 hydroxypropyl beta cyclodextrin)
Adolescent
Adult
Alter K
Article
balance impairment
body equilibrium
case control study
characteristics
Child
Clinical Article
clinical evaluation
Comparative Study
coordination disorder
disease severity assessment
Farhat N
Female
gait disorder
Human
Human Development
intervention study
Journal of Child Neurology
Keener L A
Male
molecular stability
motion analysis system
Neurologic Examination
Niemann Pick disease
NIH NPC Neurologic Severity Scale
NPC
outcome assessment
performance
Porter F
Preschool Child
Priority Journal
Research
Retrospective Study
Sansare A
School Child
scoring system
spatiotemporal analysis
stabilography
Stanley C
tone and motor problems
Trajectory
Upper limb
vts 270
Young Adult
Zampieri C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0883073812450750" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073812450750</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Fatigue and depression in children with demyelinating disorders
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Canada; epidemiology; child behavior; disease duration; priority journal; school child; health survey; self report; cohort analysis; cross-sectional study; psychological aspect; human; article; child; female; male; controlled study; clinical article; comorbidity; childhood disease; mood; sleep; therapy; acute disseminated encephalomyelitis; demyelinating disease; depression; fatigue; multiple sclerosis; acute disseminated encephalomyelitis; demyelinating disorders; multiple sclerosis; acquired demyelinating syndromes; trajectory; characteristics; alertness
Creator
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Parrish J B;Weinstock-Guttman B;Smerbeck A;Benedict R H B;Yeh E A
Description
An account of the resource
Fatigue and depression have been shown to be significant problems in children with multiple sclerosis. The rate at which these conditions occur in children with other acquired demyelinating syndromes is unknown. In this cross-sectional study, the authors evaluated 49 children with demyelinating disorders (multiple sclerosis and acute disseminated encephalomyelitis) and 92 healthy controls for depression and/or fatigue using the Behavior Assessment System for Children, Second Edition behavior and mood rating scale and Varni PedsQL Multidimensional Fatigue Scale. The parents of acquired demyelinating syndrome patients were more likely to report elevated depressive symptoms (30.8% vs 10.8%, P =.008). Elevated parent and self-reported total fatigue (25% vs 0%, P <.001, 26.7% vs 8.6%, P =.024) was seen in the patient cohort. The authors conclude that fatigue and depression are far more common in children with acquired demyelinating syndromes than in controls. Clinical attention to and implementation of effective therapies oriented toward these conditions in children with acquired demyelinating syndromes is needed. © The Author(s) 2012.
Identifier
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<a href="http://doi.org/10.1177/0883073812450750" target="_blank" rel="noreferrer noopener">10.1177/0883073812450750</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2013
acquired demyelinating syndromes
acute disseminated encephalomyelitis
Adolescent
alertness
Article
Benedict R H B
Canada
characteristics
Child
Child Behavior
Childhood Disease
Clinical Article
Cohort Analysis
Comorbidity
Controlled Study
Cross-sectional Study
demyelinating disease
demyelinating disorders
Depression
disease duration
Epidemiology
Fatigue
Female
Health Survey
Human
Journal of Child Neurology
Male
Mood
Multiple Sclerosis
Parrish J B
Priority Journal
psychological aspect
School Child
Self Report
Sleep
Smerbeck A
Therapy
Trajectory
Weinstock-Guttman B
Yeh E A
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0883073812441999" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073812441999</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Movement disorder in ataxia-telangiectasia: treatment with amantadine sulfate
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Adolescent; Amantadine/tu [Therapeutic Use]; Antiparkinson Agents/Antiparkinson [Therapeutic Use]; Ataxia Telangiectasia/co [Complications]; Child; Preschool; Disability; Evaluation; Humans; Movement Disorders/dt [Drug Therapy]; Movement Disorders/et [Etiology]; Neurologic Examination; Prospective Studies; Severity of Illness Index; 0 (Antiparkinson Agents); BF4C9Z1J53 (Amantadine); tone and motor problems; ataxia telangiectasia; pharmacologic intervention; amantadine sulfate
Creator
An entity primarily responsible for making the resource
Nissenkorn A; Hassin-Baer S; Lerman S F; Levi Y B; Tzadok M; Ben-Zeev B
Description
An account of the resource
Ataxia-telangiectasia is a cerebellar neurodegenerative disorder presenting with ataxia, chorea, myoclonus, and bradykinesia. Literature on treatment of movement disorders is scarce. We treated 17 children (aged 11.2 +/- 3.9 years) for 8 weeks with the dopaminergic and anti-N-methyl-d-aspartate (NMDA) agent amantadine sulfate 6.3 +/- 0.87 mg/kg/d. Ataxia was assessed by using the International Cooperative Ataxia Scale, parkinsonism by the Unified Parkinson Disease Rating Scale, and chorea/myoclonus by the Abnormal Involuntary Movement Scale. Responders were considered those patients who had at least 20% improvement in the summation of the 3 scales. Overall, 76.5% of patients were responders, with a mean 29.3% improvement. Ataxia, involuntary movements, and parkinsonism improved significantly (25.3%, 32.5%, and 29.5%, respectively); (P < .001, t test). Side effects were mild and transient, and they did not lead to drug discontinuation. Amantadine is a well-tolerated and effective treatment for motor symptoms in ataxia telangiectasia. Assessment of long-term effects and a double-blind study should follow.
Identifier
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<a href="http://doi.org/10.1177/0883073812441999" target="_blank" rel="noreferrer noopener">10.1177/0883073812441999</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
0 (Antiparkinson Agents)
2013
Adolescent
amantadine sulfate
Amantadine/tu [Therapeutic Use]
Antiparkinson Agents/Antiparkinson [Therapeutic Use]
ataxia telangiectasia
Ataxia Telangiectasia/co [Complications]
Ben-Zeev B
BF4C9Z1J53 (Amantadine)
Child
Disability
Evaluation
Hassin-Baer S
Humans
Journal of Child Neurology
Lerman S F
Levi Y B
Movement Disorders/dt [Drug Therapy]
Movement Disorders/et [Etiology]
Neurologic Examination
Nissenkorn A
pharmacologic intervention
Preschool
Prospective Studies
Severity Of Illness Index
tone and motor problems
Tzadok M
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0883073812438100" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073812438100</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Botulinum Toxin Type A for the Treatment of Equinus Deformity in Patients With Mucopolysaccharidosis Type II
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
children; Pediatrics; Neurosciences & Neurology; management; botulinum toxin type A; cerebral-palsy; disease; equinus deformity; Hunter syndrome; hunter-syndrome; II; mucopolysaccharidosis type; recommendations; skeletal-muscle; tone and motor problems; MPSII; pharmacologic intervention; physical intervention; botulinum toxin type A; serial casting; physical therapy
Creator
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Nava E; Weber P; Gautschi M; Nuoffer J M; Grunt S
Description
An account of the resource
Mucopolysaccharidoses are lysosomal storage disorders that are caused by a deficiency in the enzymes that degrade glycosaminoglycans. The accumulation of glycosaminoglycans affects multiple systems, resulting in coarse facial features, short stature, organomegaly, and variable neurological changes from normal intelligence to severe mental retardation and spasticity. Effects on the musculoskeletal system include dysostosis multiplex, joint stiffness, and muscle shortening. This article reports 2 patients with mucopolysaccharidosis type II (Hunter syndrome) who showed progressive equinus deformity of the feet. Both patients were treated with intramuscular botulinum toxin type A injections in the gastrocnemius and the soleus muscles, followed by serial casting. In both patients, passive range of motion, muscle tone, and gait performance were significantly improved. Botulinum toxin type A injections followed by serial casting are a therapeutic option for contractures in patients with mucopolysaccharidosis. However, the long-term effects and the effect of application in other muscles remain unknown.
Identifier
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<a href="http://doi.org/10.1177/0883073812438100" target="_blank" rel="noreferrer noopener">10.1177/0883073812438100</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2012
botulinum toxin type A
cerebral-palsy
Children
Disease
equinus deformity
Gautschi M
Grunt S
Hunter syndrome
hunter-syndrome
II
Journal of Child Neurology
Management
MPSII
mucopolysaccharidosis type
Nava E
Neurosciences & Neurology
Nuoffer J M
Pediatrics
pharmacologic intervention
physical intervention
Physical Therapy
Recommendations
serial casting
skeletal-muscle
tone and motor problems
Weber P
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/088307380101601001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/088307380101601001</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Sleep and Its Disturbance in a Variant Form of Late Infantile Neuronal Ceroid Lipofuscinosis (CLNS)
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
sleep disturbance/disorders; NCL5; trajectory; characteristics
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Kirveskari E; Partinen M; Santavuori P
Description
An account of the resource
To examine the nature of sleep disturbance in patients with a variant form of late infantile neuronal ceroid lipofuscinosis (CLNS), we studied 12 patients (age range 7-32 years). We used a sleep questionnaire to assess sleep and its disturbances quantitatively. To identify the periodicity in the diurnal rest-activity rhythms, the motor activity level was recorded by activity monitors continuously for a 1-week period with concomitant sleep logs. In addition, whole-night polysomnographic recordings were performed. The patients under 20 years of age had an excess of nocturnal sleep (the mean of the usual duration of nighttime sleep was 10.0 hours) and frequent daytime naps. Frequent shifts of the longest sleep period into the daytime hours and fragmented diurnal rest-activity patterns with no distinct rhythm occurred in the older patients. The progressive disease may damage the internal circadian timing system and also impair the ability of patients with variant late infantile neuronal ceroid lipofuscinosis to use external time cues for synchronization of their sleep and environmental time. (J Child Neurol 2001;16:707-713).
Identifier
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<a href="http://doi.org/10.1177/088307380101601001" target="_blank" rel="noreferrer noopener">10.1177/088307380101601001</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2001
characteristics
Journal of Child Neurology
Kirveskari E
NCL5
Partinen M
Santavuori P
sleep disturbance/disorders
Trajectory
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/08830738050200011302" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08830738050200011302</a>
Dublin Core
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Title
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Effect of melatonin dosage on sleep disorder in tuberous sclerosis complex
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Male; Treatment Outcome; Dose-Response Relationship Drug; Child; Humans; Adult; Cross-Over Studies; Female; Child Preschool; Infant; Administration Oral; Double-Blind Method; Tuberous Sclerosis/complications; Antioxidants/pharmacology/therapeutic use; Melatonin/pharmacology/therapeutic use; Sleep Wake Disorders/drug therapy/etiology; sleep disturbance/disorders; tuberous sclerosis; pharmacologic intervention; melatonin
Creator
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Hancock E; O'Callaghan F; Osborne J P
Description
An account of the resource
We report a randomized, double-blind, controlled, crossover trial investigating the response to oral melatonin using two dose regimens in patients with sleep disorders associated with tuberous sclerosis complex. Eight outpatients with tuberous sclerosis complex and sleep disorder received either 5 or 10 mg of melatonin. Sleep latency, total sleep time, number of awakenings, and seizure frequency were recorded in sleep and seizure diaries. No evidence of a dose effect between 5 and 10 mg was seen with respect to any outcome measure. (The 5 mg results are given first: sleep latency, 86 and 76 minutes; total sleep time, 8 hours, 57 minutes and 9 hours, 4 minutes; and sleep fragmentation, 0.8 and 1.0). This study might have missed a small beneficial effect of 10 mg melatonin. We propose that an initial trial of 5 mg melatonin is worth considering in patients with tuberous sclerosis complex and sleep disorder.
Identifier
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<a href="http://doi.org/10.1177/08830738050200011302" target="_blank" rel="noreferrer noopener">10.1177/08830738050200011302</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2005
Administration Oral
Adult
Antioxidants/pharmacology/therapeutic use
Child
Child Preschool
Cross-Over Studies
Dose-Response Relationship Drug
Double-Blind Method
Female
Hancock E
Humans
Infant
Journal of Child Neurology
Male
melatonin
Melatonin/pharmacology/therapeutic use
O'Callaghan F
Osborne J P
pharmacologic intervention
sleep disturbance/disorders
Sleep Wake Disorders/drug therapy/etiology
Treatment Outcome
Tuberous Sclerosis
Tuberous Sclerosis/complications
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/08830738050200010301" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08830738050200010301</a>
Dublin Core
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Title
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Melatonin excretion in normal children and in tuberous sclerosis complex with sleep disorder responsive to melatonin
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Circadian Rhythm; Male; Case-Control Studies; Child; Humans; Adolescent; Female; Child Preschool; Administration Oral; Reference Values; Tuberous Sclerosis; Antioxidants; Melatonin; Sleep Wake Disorders; Antioxidants/pk [Pharmacokinetics]; Circadian Rhythm; Melatonin/aa [Analogs & Derivatives]; Melatonin/pk [Pharmacokinetics]; Sleep Wake Disorders/co [Complications]; Tuberous Sclerosis/co [Complications]; 0 (Antioxidants); 2208-40-4 (6-sulfatoxymelatonin); Antioxidants/ad [Administration & Dosage]; JL5DK93RCL (Melatonin); Melatonin/ad [Administration & Dosage]; Melatonin/ur [Urine]; Sleep Wake Disorders/pp [Physiopathology]; Tuberous Sclerosis/pp [Physiopathology]; sleep disturbance/disorders; trajectory; characteristics; melatonin
Creator
An entity primarily responsible for making the resource
Hancock E; O'Callaghan F; English J; Osborne J P
Description
An account of the resource
To determine normal melatonin excretion patterns in healthy children without sleep disorder and to compare these with those of patients with tuberous sclerosis complex and sleep disorder responsive to exogenous melatonin, we measured 6-sulfatoxymelatonin excretion in 21 healthy children and in 7 patients with tuberous sclerosis complex and sleep disorder responsive to melatonin (a 5 mg oral dose increasing total sleep time). Total excretion, cosinor percentage, and acrophase time of 6-sulfatoxymelatonin excretion were estimated. In normal children, total 6-sulfatoxymelatonin excretion was range 11.1 to 40.2 microg (mean 19.0 microg, SD 7.4 microg); cosinor percentage rhythm range was 52.9% to 100% (mean 87%, median 94%); and acrophase time range was 23 hours, 54 minutes to 10 hours, 42 minutes (mean 5 hours, 54 minutes; median 4 hours, 12 minutes). Fifth and 95th percentiles were 11.1 to 29.0 microg, 57.8% to 99.9%, and 2 hours, 1 minute to 10 hours, 4 minutes. In tuberous sclerosis, normal patterns of melatonin excretion were seen in responders. Circadian patterns of melatonin excretion were similar in children and adults. We propose that exogenous melatonin can act by a simple sedative action.
Identifier
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<a href="http://doi.org/10.1177/08830738050200010301" target="_blank" rel="noreferrer noopener">10.1177/08830738050200010301</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
0 (Antioxidants)
2005
2208-40-4 (6-sulfatoxymelatonin)
Administration Oral
Adolescent
Antioxidants
Antioxidants/ad [Administration & Dosage]
Antioxidants/pk [Pharmacokinetics]
Case-Control Studies
characteristics
Child
Child Preschool
Circadian Rhythm
English J
Female
Hancock E
Humans
JL5DK93RCL (Melatonin)
Journal of Child Neurology
Male
melatonin
Melatonin/aa [Analogs & Derivatives]
Melatonin/ad [Administration & Dosage]
Melatonin/pk [Pharmacokinetics]
Melatonin/ur [Urine]
O'Callaghan F
Osborne J P
Reference Values
sleep disturbance/disorders
Sleep Wake Disorders
Sleep Wake Disorders/co [Complications]
Sleep Wake Disorders/pp [Physiopathology]
Trajectory
Tuberous Sclerosis
Tuberous Sclerosis/co [Complications]
Tuberous Sclerosis/pp [Physiopathology]
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0883073811429859" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073811429859</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Respiratory disturbances in rett syndrome: Don't forget to evaluate upper airway obstruction
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
breathing difficulties; Rett syndrome; trajectory; characteristics; respiratory muscle strength
Creator
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Hagebeuk E E O; Bijlmer R P G M; Koelman J H T M; Poll-The B T
Description
An account of the resource
Rett syndrome is characterized by loss of motor and social functions, development of stereotypic hand movements, seizures, and breathing disturbances. This study evaluates the presence of overnight respiratory disturbances. Polysomnography in combination with a questionnaire (the Sleep Disturbance Scale for Children) was performed in 12 Dutch patients with Rett. Respiratory disturbances were present in all, clinically relevant in 10 (apnea hypopnea per hour 1.0-14.5). In 8 children, central apneas were present during the day often with obstructive apneas at night. In 6, obstructive sleep apnea syndrome was diagnosed, in 3 severe, with frequent oxygen desaturations. Significant respiratory complaints were present in 3 patients, all had obstructive sleep apnea syndrome. Of the 12 patients with Rett, 8 (67%) snored, and in 5 obstructive sleep apnea syndrome was present. In children, hypertrophied tonsils and adenoids are a common cause of obstructive sleep apnea syndrome, which may benefit from therapeutic intervention. We recommend performing polysomnography in patients with Rett syndrome and respiratory complaints. © The Author(s) 2012.
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<a href="http://doi.org/10.1177/0883073811429859" target="_blank" rel="noreferrer noopener">10.1177/0883073811429859</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2012
Bijlmer R P G M
breathing difficulties
characteristics
Hagebeuk E E O
Journal of Child Neurology
Koelman J H T M
Poll-The B T
respiratory muscle strength
Rett syndrome
Trajectory
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0883073811402688" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073811402688</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Change in gross motor abilities of girls and women with rett syndrome over a 3- to 4-year period
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Age Factors; Disease Progression; Young Adult; Humans; Longitudinal Studies; Adult; Adolescent; Female; Retrospective Studies; Australia; Linear Models; Mutation/genetics; Methyl-CpG-Binding Protein 2/genetics; Arginine/genetics; Motor Skills/physiology; Movement Disorders/etiology/genetics; Rett Syndrome/complications/genetics; tone and motor problems; Rett syndrome; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Foley K R; Downs J; Bebbington A; Jacoby P; Girdler S; Kaufmann W E; Leonard H
Description
An account of the resource
Rett syndrome is a rare but severe neurological disorder typically associated with a mutation in the MECP2 gene. We describe change in gross motor function over 3 to 4 years for 70 subjects participating in the Australian Rett Syndrome Database. Linear regression was used to assess relationships with age, genotype, and general and complex gross motor skills scores measured on the Gross Motor Scale for Rett syndrome. Skills were slightly better or maintained in approximately 40% of subjects and slightly decreased in approximately 60%. Teenagers and women who walked in 2004 were less likely to lose complex skills than those younger. Girls with a p.R294X mutation were more likely to lose complex motor skills, otherwise skill changes were spread across the mutation categories. In conclusion, small changes were observed over this period with greater stability of skills in teenagers and women with the ability to walk.
Identifier
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<a href="http://doi.org/10.1177/0883073811402688" target="_blank" rel="noreferrer noopener">10.1177/0883073811402688</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2011
Adolescent
Adult
Age Factors
Arginine/genetics
Australia
Bebbington A
characteristics
Disease Progression
Downs J
Female
Foley K R
Girdler S
Humans
Jacoby P
Journal of Child Neurology
Kaufmann W E
Leonard H
Linear Models
Longitudinal Studies
Methyl-CpG-Binding Protein 2/genetics
Motor Skills/physiology
Movement Disorders/etiology/genetics
Mutation/genetics
Retrospective Studies
Rett syndrome
Rett Syndrome/complications/genetics
tone and motor problems
Trajectory
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0883073810381920" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073810381920</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Longitudinal Hand Function in Rett Syndrome
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
tone and motor problems; Rett syndrome; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Downs J; Bebbington A; Kaufmann W E; Leonard H
Description
An account of the resource
Loss of hand function is a core feature of Rett syndrome. This article describes longitudinal hand function at 3 time points for 72 subjects participating in the Australian Rett Syndrome Database. Approximately 40% of subjects with some grasping abilities lost skill over the 3- to 4-year period between video assessments. In these subjects, a decrease in hand function was seen less frequently in girls 13 to 19 years old than in those younger than 8 years, in subjects with some mobility compared with those who were wheelchair bound, and in those who had previously been able to finger feed. Relationships with the magnitude of change reflected these findings. Change in hand function did not vary with clinical severity. The results for all subjects were similar to results obtained when analysis was restricted to those with a pathogenic mutation. Variability in the longitudinal course of hand function in Rett syndrome was observed.
Identifier
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<a href="http://doi.org/10.1177/0883073810381920" target="_blank" rel="noreferrer noopener">10.1177/0883073810381920</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2011
Bebbington A
characteristics
Downs J
Journal of Child Neurology
Kaufmann W E
Leonard H
Rett syndrome
tone and motor problems
Trajectory
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.2310/7010.2001.16810" target="_blank" rel="noreferrer noopener">http://doi.org/10.2310/7010.2001.16810</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Melatonin for treatment of sleep disorders in children with developmental disabilities
Publisher
An entity responsible for making the resource available
Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Pediatrics; Neurosciences & Neurology; sleep disturbance/disorders; unspecified developmental disabilities; developmental disabilities; pharmacologic intervention; melatonin
Creator
An entity primarily responsible for making the resource
Dodge N N; Wilson G A
Description
An account of the resource
This study explored the safety and efficacy of synthetic melatonin in the treatment of sleep problems in 20 children with developmental disabilities, in a randomized, double-blind, placebo-controlled 6-week trial of melatonin versus placebo. All but 2 children fell asleep more quickly when receiving melatonin than placebo. Overall, the greater the sleep latency (time to fall asleep) was at baseline or when receiving placebo, the more pronounced was the decrease in sleep latency with melatonin. The effect of melatonin on sleep latency was significant (P < .05). The duration of sleep while receiving melatonin was significantly greater than baseline (P < .007) but was not significantly different from placebo, and no difference in the number of awakenings was noted. No side effects were reported. Eleven of 18 parents (61%) correctly identified the weeks their child received melatonin. This study suggests that synthetic melatonin reduces sleep latency in children with developmental disabilities.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2310/7010.2001.16810" target="_blank" rel="noreferrer noopener">10.2310/7010.2001.16810</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2001
Developmental Disabilities
Dodge N N
Journal of Child Neurology
melatonin
Neurosciences & Neurology
Pediatrics
pharmacologic intervention
sleep disturbance/disorders
unspecified developmental disabilities
Wilson G A
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/088307389601100414" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/088307389601100414</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Melatonin appears ineffective in children with intellectual deficits and fragmented sleep: six "N of 1" trials
Publisher
An entity responsible for making the resource available
Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Male; Child; Humans; Adolescent; Female; Child Preschool; Double-Blind Method; Intellectual Disability/complications; Melatonin/therapeutic use; Sleep Wake Disorders/drug therapy/etiology; sleep disturbance/disorders; undefined neurodevelopmental disorders; neurodevelopmental disorder; pharmacologic intervention; melatonin
Creator
An entity primarily responsible for making the resource
Camfield P; Gordon K; Dooley J; Camfield C
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/088307389601100414" target="_blank" rel="noreferrer noopener">10.1177/088307389601100414</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
1996
Adolescent
Camfield C
Camfield P
Child
Child Preschool
Dooley J
Double-Blind Method
Female
Gordon K
Humans
Intellectual Disability/complications
Journal of Child Neurology
Male
melatonin
Melatonin/therapeutic use
neurodevelopmental disorder
pharmacologic intervention
sleep disturbance/disorders
Sleep Wake Disorders/drug therapy/etiology
undefined neurodevelopmental disorders
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0883073816650037" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073816650037</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Diagnosis and Management of Drooling in Children With Progressive Dystonia: A Case Series of Patients With MEGDEL Syndrome
Publisher
An entity responsible for making the resource available
Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
feeding difficulties; MEGDEL syndrome; surgical intervention; pharmacological intervention; bilateral submandibular gland excision; parotid duct ligation; advice to interrupt tongue protrusion; adenotonsillectomy; feeding advice; antireflux medication
Creator
An entity primarily responsible for making the resource
Blommaert D; van Hulst K; Hoogen F J A van den; Erasmus C E; Wortmann S B
Description
An account of the resource
Drooling is a common problem in children with progressive dystonia. The authors noted a 58% incidence of drooling in 22/38 children with MEGDEL, a rare neurodegenerative cause of dystonia and report on the clinical course of four patients. Drooling of varying severity and subsequent respiratory problems were treated at the authors' multidisciplinary saliva-control outpatient clinic. One patient improved on antireflux medication, the second after medication with drooling as side effect was changed. Two other patients underwent salivary gland surgery, one of whom significantly improved; the other died shortly after surgery. The heterogeneity of the cases presented shows the need for stepwise and personalized treatment. The authors recommend the following: (1) optimize the treatment of the underlying neurological condition and replace medication that stimulates saliva secretion; (2) treat constipation, scoliosis, and gastroesophageal reflux if there is still a risk of chronic aspiration of saliva; (3) perform more intense/invasive treatment (botulinum toxin, salivary gland surgery).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073816650037" target="_blank" rel="noreferrer noopener">10.1177/0883073816650037</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
adenotonsillectomy
advice to interrupt tongue protrusion
antireflux medication
bilateral submandibular gland excision
Blommaert D
Erasmus C E
feeding advice
feeding difficulties
Hoogen F J A van den
Journal of Child Neurology
MEGDEL syndrome
parotid duct ligation
pharmacological intervention
surgical intervention
van Hulst K
Wortmann S B
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2019 List
URL Address
<a href="http://doi.org/10.1177/0883073818822900" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1177/0883073818822900</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
end-of-life care; palliative care; pediatrics; neonatology; Sma
Creator
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Beernaert K; Lovgren M; Jeppesen J; Werlauff U; Rahbek J; Sejersen T; Kreicbergs U
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<a href="http://doi.org/10.1177/0883073818822900" target="_blank" rel="noreferrer noopener"> 10.1177/0883073818822900</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness. STUDY DESIGN:: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care. RESULTS:: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled. CONCLUSIONS:: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.
2019
Beernaert K
End-of-life Care
Jeppesen J
Journal of Child Neurology
Kreicbergs U
Lovgren M
March 2019 List
Neonatology
Palliative Care
Pediatrics
Rahbek J
Sejersen T
Sma
Werlauff U
-
Dublin Core
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Title
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February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1177/0883073818811544" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1177/0883073818811544</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved
Publisher
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Journal of child neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
spinal muscular atrophy; pediatric palliative care; care coordination; health care professional; neuromuscular disease; parental perception
Creator
An entity primarily responsible for making the resource
Hjorth E; Kreicbergs U; Sejersen T; Jeppesen J; Werlauff U; Rahbek J; Lovgren M
Description
An account of the resource
BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings. METHODS:: Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used. RESULTS:: Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management. CONCLUSIONS:: This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073818811544" target="_blank" rel="noreferrer noopener">10.1177/0883073818811544</a>
2018
Care coordination
February 2019 List
health care professional
Hjorth E
Jeppesen J
Journal of Child Neurology
Kreicbergs U
Lövgren M
Neuromuscular Disease
parental perception
Pediatric Palliative Care
Rahbek J
Sejersen T
Spinal Muscular Atrophy
Werlauff U
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073813484088" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073813484088</a>
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Title
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Functional electrical stimulation therapy for recovery of reaching and grasping in severe chronic pediatric stroke patients
Publisher
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Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Female; Humans; Male; Pediatrics; Chronic disease; Treatment Outcome; Severity of Illness Index; Disability Evaluation; Articular; Range of Motion; Recovery of Function; Chronic; Electric Stimulation Therapy; functional electrical stimulation therapy; grasping; Hand Strength; Psychomotor Performance; severe; Stroke; Upper Extremity
Creator
An entity primarily responsible for making the resource
Kapadia Naaz M; Nagai MK; Zivanovic V; Bernstein J; Woodhouse J; Rumney P; Popovic MR
Description
An account of the resource
Stroke affects 2.7 children per 100,000 annually, leaving many of them with lifelong residual impairments despite intensive rehabilitation. In the present study the authors evaluated the effectiveness of 48 hours of transcutaneous functional electrical stimulation therapy for retraining voluntary reaching and grasping in 4 severe chronic pediatric stroke participants. Participants were assessed using the Rehabilitation Engineering Laboratory Hand Function Test, Quality of Upper Extremity Skills Test, Pediatric Evaluation of Disability Inventory, and Assisting Hand Assessment. All participants improved on all measures. The average change scores on selected Rehabilitation Engineering Laboratory Hand Function Test components were 14.5 for object manipulation (P = .042), 0.78 Nm for instrumented cylinder (P = .068), and 14 for wooden blocks (P = .068) and on the grasp component of Quality of Upper Extremity Skills Test was 25.93 (P = .068). These results provide preliminary evidence that functional electrical stimulation therapy has the potential to improve upper limb function in severe chronic pediatric stroke patients.
2014-04
Identifier
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<a href="http://doi.org/10.1177/0883073813484088" target="_blank" rel="noreferrer">10.1177/0883073813484088</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Articular
Backlog
Bernstein J
Child
Chronic
Chronic Disease
Disability Evaluation
Electric Stimulation Therapy
Female
functional electrical stimulation therapy
grasping
Hand Strength
Humans
Journal Article
Journal of Child Neurology
Kapadia Naaz M
Male
Nagai MK
Pediatrics
Popovic MR
Psychomotor Performance
Range of Motion
Recovery of Function
Rumney P
severe
Severity Of Illness Index
Stroke
Treatment Outcome
Upper Extremity
Woodhouse J
Zivanovic V
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073814527159" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073814527159</a>
Dublin Core
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Title
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Mapping the Literature: Palliative Care Within Adult and Child Neurology
Publisher
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Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
neurologic; end-of-life care
Creator
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Dallara A; Meret A; Saroyan JM
Description
An account of the resource
Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding palliative care within general neurology and child neurology. A literature review was conducted examining use of palliative care within child neurology. More than 100 articles and textbooks were retrieved and reviewed. Expert guidelines stress the importance of expertise in palliative care among neurologists. Subspecialties written about in child neurology include that of peripheral nervous system disorders, neurodegenerative diseases, and metabolic disorders. Adult and child neurology patients have a great need for improved palliative care services, as they frequently develop cumulative physical and cognitive disabilities over time and cope with decreasing quality of life before reaching the terminal stage of their illness.
2014-04
Identifier
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<a href="http://doi.org/10.1177/0883073814527159" target="_blank" rel="noreferrer">10.1177/0883073814527159</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Dallara A
End-of-life Care
Journal Article
Journal of Child Neurology
Meret A
neurologic
Saroyan JM
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073807309254" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073807309254</a>
Dublin Core
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Title
A name given to the resource
Diagnostic yield of brain biopsies in children presenting to neurology
Publisher
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Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Female; Humans; Male; Odds Ratio; Predictive Value of Tests; Outcome and Process Assessment (Health Care); Preschool; infant; retrospective studies; Brain/pathology; Diagnosis; Differential; Children W/SNI; Epilepsy/pathology; Likelihood Functions; Decision Trees; Biopsy/statistics & numerical data; Brain Diseases/pathology; Neurodegenerative Diseases/pathology; Vasculitis/pathology
Creator
An entity primarily responsible for making the resource
Venkateswaran S; Hawkins C; Wassmer E
Description
An account of the resource
The role of brain biopsy is well established in patients with neoplastic lesions, with a diagnostic yield approaching 95%. The diagnostic yield of brain biopsy in adults with neurological decline varies from 20% to 43%. Only a few studies have examined the diagnostic yield of brain biopsy in children with idiopathic neurological decline. A retrospective analysis was conducted on all open and closed pediatric brain biopsies performed between January 1988 and May 2003. Biopsies were performed for diagnostic purposes in patients showing a progressively deteriorating neurologic course in whom less-invasive modalities such as neuroimaging, electroencephalography (EEG), and molecular genetic studies were either negative or inconclusive. Immunocompromised patients were included. Patients were excluded if the preoperative diagnosis was a neoplasm or if the patient was undergoing a resection as part of a work-up for intractable epilepsy. Each patient underwent numerous investigations before brain biopsy. The utility of each biopsy was analyzed. Sixty-six children had brain biopsies performed for diagnostic purposes during the study period. Patient ages ranged from 2 months to 16 years and 9 months at the time of biopsy. The diagnostic yield was 48.5% overall, with a yield of 68.8% between 1996 and 2003. Of the total, 26 (39.4%) biopsies were both diagnostic and useful. Patients most frequently presented with seizures (56.1%) and encephalopathy (33%). The most frequently diagnosed disease was vasculitis (18.2%). A total of 71.9% of patients with diagnostic biopsies improved with appropriate treatment. Brain biopsy in children had a diagnostic yield of 48.5% in our series. A specific diagnosis may help in management and outcome, especially with a diagnosis of vasculitis.
2008
Identifier
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<a href="http://doi.org/10.1177/0883073807309254" target="_blank" rel="noreferrer">10.1177/0883073807309254</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
Backlog
Biopsy/statistics & numerical data
Brain Diseases/pathology
Brain/pathology
Child
Children W/SNI
Decision Trees
Diagnosis
Differential
Epilepsy/pathology
Female
Hawkins C
Humans
Infant
Journal Article
Journal of Child Neurology
Likelihood Functions
Male
Neurodegenerative Diseases/pathology
Odds Ratio
Outcome And Process Assessment (health Care)
Predictive Value of Tests
Preschool
Retrospective Studies
Vasculitis/pathology
Venkateswaran S
Wassmer E
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073808331089" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073808331089</a>
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Title
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Success at publishing in biomedical journals: hints from a journal editor
Publisher
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Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
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Biomedical Research; Research; Authorship; Peer Review; Periodicals as Topic; Publishing; PubMed
Creator
An entity primarily responsible for making the resource
Brumback RA
Identifier
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<a href="http://doi.org/10.1177/0883073808331089" target="_blank" rel="noreferrer">10.1177/0883073808331089</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2009
Authorship
Backlog
Biomedical Research
Brumback RA
Journal Article
Journal of Child Neurology
Peer Review
Periodicals as Topic
Publishing
PubMed
Research
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073809340922" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073809340922</a>
Dublin Core
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Title
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ABRV (or Abbrevobabble Revisited)
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Interdisciplinary Communication; Language; Research/standards; Biomedical Research/standards; Peer Review; Abbreviations as Topic; Periodicals as Topic/standards
Creator
An entity primarily responsible for making the resource
Brumback RA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073809340922" target="_blank" rel="noreferrer">10.1177/0883073809340922</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2009
Abbreviations as Topic
Backlog
Biomedical Research/standards
Brumback RA
Interdisciplinary Communication
Journal Article
Journal of Child Neurology
Language
Peer Review
Periodicals as Topic/standards
Research/standards
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073809353149" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073809353149</a>
Dublin Core
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Title
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Incidental neuroimaging findings in nonacute headache
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Cohort Studies; Comorbidity; adolescent; Preschool; retrospective studies; Headache Disorders/epidemiology/pathology/radiography; Incidental Findings; Nervous System Malformations/epidemiology/pathology/radiography
Creator
An entity primarily responsible for making the resource
Graf WD; Kayyali HR; Abdelmoity AT; Womelduff GL; Williams AR; Morriss MC
Description
An account of the resource
We studied the frequency and consequences of incidental neuroimaging findings in 400 otherwise healthy, nonacute pediatric headache patients through a retrospective, cross-sectional analysis. We excluded patients with currently recommended clinical criteria to consider diagnostic neuroimaging. We categorized neuroimaging results as normal, remarkable without clinical action, remarkable with clinical follow-up action, and abnormal. One hundred eighty-five of 400 patients (46%) had neuroimaging. Of these, 78.4% of neuroimaging studies were normal, and none was considered abnormal. Also, 21.5% had remarkable findings in the neuroradiology report. The frequency and types of all incidental findings were generally comparable to previous studies. One third of these patients received further consultation or neuroimaging because of incidental findings. In the evaluation of nonacute pediatric headache, overuse of neuroimaging leads to frequent discovery of incidental findings and increased testing. Individualized health care calls for physician-consumer discussions about current indications for neuroimaging, the general frequency of incidental findings, and potential difficulties in their interpretation.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073809353149" target="_blank" rel="noreferrer">10.1177/0883073809353149</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Abdelmoity AT
Adolescent
Backlog
Child
Cohort Studies
Comorbidity
Cross-sectional Studies
Female
Graf WD
Headache Disorders/epidemiology/pathology/radiography
Humans
Incidental Findings
Journal Article
Journal of Child Neurology
Kayyali HR
Male
Morriss MC
Nervous System Malformations/epidemiology/pathology/radiography
Preschool
Retrospective Studies
Williams AR
Womelduff GL
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073810381924" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073810381924</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Consensus statement on standard of care for congenital muscular dystrophies
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Creator
An entity primarily responsible for making the resource
Wang CH; Bonnemann CG; Rutkowski A; Sejersen T; Bellini J; Battista V; Florence JM; Schara U; Schuler PM; Wahbi K; Aloysius A; Bash RO; Beroud C; Bertini E; Bushby K; Cohn RD; Connolly AM; Deconinck N; Desguerre I; Eagle M; Estournet-Mathiaud B; Ferreiro A; Fujak A; Goemans N; Iannaccone ST; Jouinot P; Main M; Melacini P; Mueller-Felber W; Muntoni F; Nelson LL; Rahbek J; Quijano-Roy S; Sewry C; Storhaug K; Simonds A; Tseng B; Vajsar J; Vianello A; Zeller R
Description
An account of the resource
Congenital muscular dystrophies are a group of rare neuromuscular disorders with a wide spectrum of clinical phenotypes. Recent advances in understanding the molecular pathogenesis of congenital muscular dystrophy have enabled better diagnosis. However, medical care for patients with congenital muscular dystrophy remains very diverse. Advances in many areas of medical technology have not been adopted in clinical practice. The International Standard of Care Committee for Congenital Muscular Dystrophy was established to identify current care issues, review literature for evidence-based practice, and achieve consensus on care recommendations in 7 areas: diagnosis, neurology, pulmonology, orthopedics/rehabilitation, gastroenterology/ nutrition/speech/oral care, cardiology, and palliative care. To achieve consensus on the care recommendations, 2 separate online surveys were conducted to poll opinions from experts in the field and from congenital muscular dystrophy families. The final consensus was achieved in a 3-day workshop conducted in Brussels, Belgium, in November 2009. This consensus statement describes the care recommendations from this committee.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073810381924" target="_blank" rel="noreferrer">10.1177/0883073810381924</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Aloysius A
Backlog
Bash RO
Battista V
Bellini J
Beroud C
Bertini E
Bonnemann CG
Bushby K
Cohn RD
Connolly AM
Deconinck N
Desguerre I
Eagle M
Estournet-Mathiaud B
Ferreiro A
Florence JM
Fujak A
Goemans N
Iannaccone ST
Jouinot P
Journal Article
Journal of Child Neurology
Main M
Melacini P
Mueller-Felber W
Muntoni F
Nelson LL
Quijano-Roy S
Rahbek J
Rutkowski A
Schara U
Schuler PM
Sejersen T
Sewry C
Simonds A
Storhaug K
Tseng B
Vajsar J
Vianello A
Wahbi K
Wang CH
Zeller R
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/08830738050200080701" target="_blank" rel="noreferrer">http://doi.org/10.1177/08830738050200080701</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Unusual clinical presentations in four cases of Leigh disease, cytochrome C oxidase deficiency, and SURF1 gene mutations
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; infant; Male; Phenotype; infant; Q3 Literature Search; Newborn; DNA Mutational Analysis; Muscle; Skeletal/pathology; Proteins/genetics; Frameshift Mutation; Cytochrome-c Oxidase Deficiency/complications/genetics/pathology; Kidney Diseases/etiology; Leigh Disease/complications/genetics/pathology; Membrane Proteins; Mitochondrial Proteins
Creator
An entity primarily responsible for making the resource
Tay SK; Sacconi S; Akman HO; Morales JF; Morales A; De Vivo DC; Shanske S; Bonilla E; DiMauro S
Description
An account of the resource
Mutations in the SURF1 gene are the most frequent causes of Leigh disease with cytochrome c oxidase deficiency. We describe four children with novel SURF1 mutations and unusual features: three had prominent renal symptoms and one had ragged red fibers in the muscle biopsy. We identified five pathogenic mutations in SURF1: two mutations were novel, an in-frame nonsense mutation (834G-->A) and an out-of-frame duplication (820-824dupTACAT). Although renal manifestations have not been described in association with SURF1 mutations, they can be part of the clinical presentation. Likewise, mitochondrial proliferation in muscle (with ragged red fibers) is most unusual in Leigh disease but might be part of an emerging phenotype.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/08830738050200080701" target="_blank" rel="noreferrer">10.1177/08830738050200080701</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Akman HO
Backlog
Bonilla E
Cytochrome-c Oxidase Deficiency/complications/genetics/pathology
De Vivo DC
DiMauro S
DNA Mutational Analysis
Female
Frameshift Mutation
Humans
Infant
Journal Article
Journal of Child Neurology
Kidney Diseases/etiology
Leigh Disease/complications/genetics/pathology
Male
Membrane Proteins
Mitochondrial Proteins
Morales A
Morales JF
Muscle
Newborn
Phenotype
Proteins/genetics
Q3 Scoping Review Results
Sacconi S
Shanske S
Skeletal/pathology
Tay SK
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073803018001s0301" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073803018001s0301</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Movement disorders in children: definitions, classifications, and grading systems
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Humans; Ataxia/physiopathology; Athetosis/physiopathology; Chorea/physiopathology; Dystonia/classification/physiopathology; Movement Disorders/classification/diagnosis/physiopathology; Muscle Rigidity/physiopathology; Muscle Spasticity/physiopathology; Myoclonus/physiopathology; Tics/physiopathology; Tremor/physiopathology
Creator
An entity primarily responsible for making the resource
Delgado MR; Albright AL
Description
An account of the resource
Disorders that affect movement in children are relatively common. However, they have received little attention, especially when compared with epilepsy and neuromuscular disorders. In this review article, we address the major types of movement disorders that affect children, their clinical characteristics and etiologies, and, when available, the scales used to grade them. A discussion on spasticity, which traditionally is not addressed in reviews of "movement disorders," is also included.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073803018001s0301" target="_blank" rel="noreferrer">10.1177/0883073803018001s0301</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2003
Albright AL
Ataxia/physiopathology
Athetosis/physiopathology
Backlog
Child
Chorea/physiopathology
Delgado MR
Dystonia/classification/physiopathology
Humans
Journal Article
Journal of Child Neurology
Movement Disorders/classification/diagnosis/physiopathology
Muscle Rigidity/physiopathology
Muscle Spasticity/physiopathology
Myoclonus/physiopathology
Tics/physiopathology
Tremor/physiopathology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073803018001s0601" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073803018001s0601</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Oral pharmacotherapy of childhood movement disorders
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Humans; Posture; Administration; Oral; Age of Onset; Ataxia/drug therapy; Basal Ganglia/physiopathology; Hyperkinesis/drug therapy; Hypokinesia/drug therapy; Movement Disorders/drug therapy/physiopathology; Muscle Hypotonia/drug therapy/physiopathology; Muscle Spasticity/drug therapy; Neuromuscular Agents/administration & dosage
Creator
An entity primarily responsible for making the resource
Edgar TS
Description
An account of the resource
Movement disorders, a common problem in children with neurologic impairment, are receiving increasing clinical attention. The differences in movement disorders between adults and children are striking; presentation is frequently insidious and may be characterized by mild hypotonia. The clinical manifestations of extrapyramidal disorders are profoundly influenced by the age of onset. The conditions reviewed in this article are expressed clinically by the occurrence of abnormalities of movement and posture, often in association with disturbances of muscle tone. This article reviews empiric drug use and recommendations for childhood movement disorders.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073803018001s0601" target="_blank" rel="noreferrer">10.1177/0883073803018001s0601</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2003
Administration
Age of Onset
Ataxia/drug therapy
Backlog
Basal Ganglia/physiopathology
Child
Edgar TS
Humans
Hyperkinesis/drug therapy
Hypokinesia/drug therapy
Journal Article
Journal of Child Neurology
Movement Disorders/drug therapy/physiopathology
Muscle Hypotonia/drug therapy/physiopathology
Muscle Spasticity/drug therapy
Neuromuscular Agents/administration & dosage
Oral
Posture
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/088307380001500110" target="_blank" rel="noreferrer">http://doi.org/10.1177/088307380001500110</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Neurologic presentations of mitochondrial disorders
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Child; Female; Humans; Male; Follow-Up Studies; Q3 Literature Search; Brain Diseases; Metabolic; Neurologic Examination; Mental Retardation/diagnosis/genetics; Deafness/diagnosis/genetics; Developmental Disabilities/diagnosis/genetics; Inborn/diagnosis/genetics; MELAS Syndrome/diagnosis/genetics; MERRF Syndrome/diagnosis/genetics; Mitochondrial Myopathies/diagnosis/genetics
Creator
An entity primarily responsible for making the resource
Nissenkorn A; Zeharia A; Lev D; Watemberg N; Fattal-Valevski A; Barash V; Gutman A; Harel S; Lerman-Sagie T
Description
An account of the resource
This article describes the neurologic presentations of children with mitochondrial disorders. The charts of 42 children with highly suspect mitochondrial disorders were reviewed. Thirty-seven children were diagnosed as having definite mitochondrial disorders based on a suggestive clinical presentation and at least one accepted criteria, while in five patients the diagnosis remained probable. All patients had nervous system involvement, but it was the presenting symptom in 28 of 42. Eighteen children had normal intelligence and 24 had mental retardation or developmental delay at the onset of their disease. Twenty-five patients had either an acute regression or a progressive encephalopathy. The most frequent neurologic manifestations were abnormal tone, seizures, extrapyramidal movements, and autonomic dysfunction. The eyes were involved in 11 children. Nerve deafness was found in seven patients. Myopathy was found in only six patients. In conclusion, a complex neurologic picture, especially with other organ involvement, warrants a full mitochondrial evaluation.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/088307380001500110" target="_blank" rel="noreferrer">10.1177/088307380001500110</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2000
Backlog
Barash V
Brain Diseases
Child
Deafness/diagnosis/genetics
Developmental Disabilities/diagnosis/genetics
Fattal-Valevski A
Female
Follow-up Studies
Gutman A
Harel S
Humans
Inborn/diagnosis/genetics
Journal Article
Journal of Child Neurology
Lerman-Sagie T
Lev D
Male
MELAS Syndrome/diagnosis/genetics
Mental Retardation/diagnosis/genetics
MERRF Syndrome/diagnosis/genetics
Metabolic
Mitochondrial Myopathies/diagnosis/genetics
Neurologic Examination
Nissenkorn A
Q3 Scoping Review Results
Watemberg N
Zeharia A
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/088307389801300206" target="_blank" rel="noreferrer">http://doi.org/10.1177/088307389801300206</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Nova Scotia Niemann-Pick disease (type D): Clinical study of 20 cases.
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Child; Female; Humans; Male; Longitudinal Studies; Nova Scotia; Preschool; cause of death; Age of Onset; Niemann-Pick Diseases/epidemiology/genetics/pathology
Creator
An entity primarily responsible for making the resource
Jan MM; Camfield PR
Description
An account of the resource
Patients with Niemann-Pick type D have been traced to a single Acadian ancestor in Nova Scotia. The objective of this study was to describe the clinical course. A cohort of children with Niemann-Pick type D was identified by chart review. Some children were seen and a telephone interview with the remaining parents was conducted. Twenty children with Niemann-Pick type D were identified. The female to male ratio was 2:1. Five children had severe neonatal jaundice. Early milestones were normal in the majority. Neurologic symptoms generally developed between 5 and 10 years of age with a mean age of 7.2 years at diagnosis. Seizures developed in all between 4.5 and 16 years of age (mean, 10.5 yr), and were followed by significant physical and mental deterioration. The age at death ranged between 11 and 22.5 years (mean, 14.8 yr). In 61%, bronchopneumonia was the cause of death. There is significant variability in the presentation and clinical course of Niemann-Pick type D.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/088307389801300206" target="_blank" rel="noreferrer">10.1177/088307389801300206</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1998
Age of Onset
Backlog
Camfield PR
Cause Of Death
Child
Female
Humans
Jan MM
Journal Article
Journal of Child Neurology
Longitudinal Studies
Male
Niemann-Pick Diseases/epidemiology/genetics/pathology
Nova Scotia
Preschool
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.2310/7010.2001.7199" target="_blank" rel="noreferrer">http://doi.org/10.2310/7010.2001.7199</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Neurologic course of congenital disorders of glycosylation
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Child; Female; Humans; Male; Magnetic Resonance Imaging; Preschool; infant; Q3 Literature Search; Brain Diseases; Metabolic; Epilepsy/diagnosis; Brain/pathology/physiopathology; Neurologic Examination; Magnetic Resonance Spectroscopy; Developmental Disabilities/diagnosis; Aspartic Acid/analogs & derivatives/metabolism; Carbohydrate-Deficient Glycoprotein Syndrome/diagnosis; Inborn/diagnosis; Lactic Acid/metabolism; Nerve Degeneration/diagnosis; Stroke/diagnosis
Creator
An entity primarily responsible for making the resource
Pearl PL; Krasnewich D
Description
An account of the resource
Congenital disorders of glycosylation, formerly called carbohydrate-deficient glycoprotein syndrome, may present in infancy with slowly progressive neurologic deficits including cognitive impairment, ataxia, pigmentary retinal degeneration, and neuropathy. The metabolic defect is in N-linked oligosaccharide synthesis, and diagnosis is made by a serum transferrin isoelectric focusing. We reviewed the neurologic course of 10 children with congenital disorders of glycosylation (ages 13 months to 7 years). All had severe developmental delay and ataxia; none walked unassisted, and the highest level of communication was simple sign language in one patient. Five of 10 children had seizures (absence, complex partial, tonic clonic). Only one patient has had strokelike episodes, despite reports that they are common in this population. The underlying basis of these episodes has been hypothesized to be coagulopathy due to dysfunctional, incorrectly glycosylated coagulation factors. This 5-year-old patient with congenital disorders of glycosylation type Ia had two strokelike episodes, with evolving hemiparesis over 5 to 6 days' duration, followed by focal tonic-clonic seizures. Coagulation studies were normal. Electroencephalography showed transient hemispheric polymorphous delta-range slowing and suppression. Magnetic resonance imaging revealed corresponding cortical swelling. Magnetic resonance angiography was normal. Magnetic resonance spectroscopy revealed a decrease in the N-acetylaspartate peak, suggesting neuronal loss, with normal lactate peak. The neuroradiologic data do not support a thrombotic, embolic, or hemorrhagic basis for strokelike episodes in carbohydrate-deficient glycoprotein syndrome; other mechanisms must be considered.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2310/7010.2001.7199" target="_blank" rel="noreferrer">10.2310/7010.2001.7199</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2001
Aspartic Acid/analogs & derivatives/metabolism
Backlog
Brain Diseases
Brain/pathology/physiopathology
Carbohydrate-Deficient Glycoprotein Syndrome/diagnosis
Child
Developmental Disabilities/diagnosis
Epilepsy/diagnosis
Female
Humans
Inborn/diagnosis
Infant
Journal Article
Journal of Child Neurology
Krasnewich D
Lactic Acid/metabolism
Magnetic Resonance Imaging
Magnetic Resonance Spectroscopy
Male
Metabolic
Nerve Degeneration/diagnosis
Neurologic Examination
Pearl PL
Preschool
Q3 Scoping Review Results
Stroke/diagnosis
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073812448532" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073812448532</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Infantile spasms (West syndrome) in children with inborn errors of metabolism: a review of the literature
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Creator
An entity primarily responsible for making the resource
Gkampeta A; Pavlou E
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073812448532" target="_blank" rel="noreferrer">10.1177/0883073812448532</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2012
Backlog
Gkampeta A
Journal Article
Journal of Child Neurology
Pavlou E
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="https://doi.org/10.1177/0883073812439345" target="_blank" rel="noreferrer">https://doi.org/10.1177/0883073812439345</a>
Notes
<p>1708-8283<br />Ho, Charles<br />Straatman, Lynn<br />Journal Article<br />United States<br />J Child Neurol. 2013 Jan;28(1):40-4. doi: 10.1177/0883073812439345. Epub 2012 Mar 23.</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Title
A name given to the resource
A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Subject
The topic of the resource
Pediatrics; Adolescent; Child; Child Preschool; Female; Humans; Infant; Male; Neuromuscular Diseases/ Mortality/ Nursing; Palliative Care/ Methods/ Utilization; Retrospective Studies; Terminal Care
Creator
An entity primarily responsible for making the resource
Ho C; Straatman L
Description
An account of the resource
Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services by children who died on a palliative care program. We conducted a retrospective chart review of all children who had a PMD who died on a single-center palliative care program. Twenty cases were identified. Services utilized by these patients included respite care, transition services, pain and symptom management, and end-of-life care. Prominent symptoms in the last 24 hours of life included respiratory distress, pain, nausea/vomiting, and anxiety; however, symptom management was very good. Utilization of services differed depending on the disease trajectory, with respite playing a critical role in the care of children with PMD. Good symptom management can be achieved.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1177/0883073812439345" target="_blank" rel="noreferrer">10.1177/0883073812439345</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2012
A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program
Adolescent
Child
Child Preschool
Female
Ho C
Humans
Infant
Journal of Child Neurology
Male
Neuromuscular Diseases/ Mortality/ Nursing
Palliative Care/ Methods/ Utilization
Pediatrics
Retrospective Studies
Straatman L
Terminal Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parent Experience Of Neonatal Encephalopathy: The Need For Family-centered Outcomes
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
2017; Anoxia; Hypoxic-ischemic Encephalopathy; Infant; Infant Newborn; Ischemia; Neonatal Development; Neonatal Encephalopathy; Parent; Therapeutic Hypothermia; Therapeutic Processes
Creator
An entity primarily responsible for making the resource
Lemmon M E; Donohue PK; Parkinson C; Northington FJ; Boss RD
Description
An account of the resource
We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014. Thematic saturation was achieved after 20 interviews. Parent experience of caring for a child with neonatal encephalopathy was characterized by 3 principal themes. Theme 1: Many families described cumulative loss and grief throughout the perinatal crisis, critical neonatal course, and subsequent missed developmental milestones. Theme 2: Families experienced entangled infant and broader family interests. Theme 3: Parents evolved into and found meaning in their role as an advocate. These data offer insight into the lived experience of parenting an infant with neonatal encephalopathy. Primary data from parents can serve as a useful framework to guide the development and interpretation of parent-centered outcomes. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Identifier
An unambiguous reference to the resource within a given context
10.1177/0883073816680747
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Anoxia
Boss RD
Donohue PK
Hypoxic-ischemic Encephalopathy
Infant
Infant Newborn
Ischemia
Journal of Child Neurology
Lemmon M E
May 2017 List
Neonatal Development
Neonatal Encephalopathy
Northington FJ
Parent
Parkinson C
Therapeutic Hypothermia
Therapeutic Processes