1
40
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Dublin Core
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February 2020 List
Text
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February 2020 List
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<a href="http://doi.org/10.1177/0883073819890516" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073819890516</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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Cannabis Use in Children With Pantothenate Kinase-Associated Neurodegeneration
Publisher
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Journal of Child Neurology
Date
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2019
Subject
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children; developmental disability; dystonia; pediatric; treatment
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Wilson J L; Gregory A; Wakeman K; Freed A; Rai P; Roberts C; Hayflick S J; Hogarth P
Description
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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
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
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URL Address
<a href="http://doi.org/10.1111/j.1365-2788.2006.00889.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1365-2788.2006.00889.x</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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Intellectual and adaptive behaviour functioning in pantothenate kinase-associated neurodegeneration
Publisher
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Journal of Intellectual Disability Research
Date
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2007
Subject
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tone and motor problems; IND; trajectory; characteristics; adaptive behavior functioning
Creator
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Freeman K; Turner A; Gregory A; Hogarth P; Blasco P; Hayflick S
Description
An account of the resource
BACKGROUND: Pantothenate kinase-associated neurodegeneration (PKAN), an extremely rare autosomal recessive disorder resulting in iron accumulation in the brain, has a diverse phenotypic expression. Based on limited case studies of one or two patients, intellectual impairment is considered part of PKAN. Investigations of cognitive functioning have utilized specific neuropsychological tests, without attention to general intellectual skills or adaptive behaviour. METHODS: Sixteen individuals with PKAN completed measures of global intellectual functioning, and participants or care providers completed measures of adaptive behaviour skills and day-to-day functional limitations. Clinicians provided global ratings of condition severity. RESULTS: Testing with standardized measures documented varied phenotypic expression, with general cognitive skills and adaptive behaviour ranging from high average to well below average. Age of disease onset correlated with measures of intellectual functioning, adaptive functioning and disease severity. CONCLUSIONS: Findings support previously described clinical impressions of varied cognitive impairment and the association between age of onset and impairment. Further, they add important information regarding the natural history of the disease and suggest assessment strategies for use in treatment trials.
Identifier
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<a href="http://doi.org/10.1111/j.1365-2788.2006.00889.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2006.00889.x</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).
2007
adaptive behavior functioning
Blasco P
characteristics
Freeman K
Gregory A
Hayflick S
Hogarth P
IND
Journal Of Intellectual Disability Research
tone and motor problems
Trajectory
Turner A