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Issue title: Immigration and Transition: Emerging Trends in Spina Bifida Care
Guest editors: Timothy Brei and Jonathan Porter Castillo
Article type: Research Article
Authors: Murphy, Pamela S.* | Kleinwachter, Nancy | Medina, Erica
Affiliations: District Medical Group Children’s Rehabilitative Services, Phoenix, AZ, USA
Correspondence: [*] Corresponding author: Pamela S. Murphy, District Medical Group Children’s Rehabilitative Services, 3141 N. 3 rd Avenue, Phoenix, AZ 85013, USA. Tel.: +1 602 769 0825; E-mail: [email protected].
Abstract: PURPOSE: Spina Bifida (SB) is a congenital defect of the neural tube resulting in motor and sensory defects and frequently includes insensate skin on the buttocks and feet which are innervated by sacral nerves. For those living in hot climates such as the Southwestern United States, environmental surfaces reach temperatures throughout June-September that cause thermal burns. The objective of this novel case series was to evaluate the circumstances associated with environmental buttocks burns in children with SB who attend the District Medical Group Children’s Rehabilitative Services Myelomeningocele (MM) Planning clinic in Phoenix, AZ. METHODS: Nine children and adolescents with SB and a history of environmental buttocks burns were identified through participation in the National Spina Bifida Patient Registry at District Medical Group Children’s Rehabilitative Services Myelomeningocele Planning Clinic. Parents and patients were interviewed about the burn circumstances, charts were reviewed, and information was gathered from the NSBPR including level of function and ambulation status. RESULTS: Most of the patients were found to be of emerging independent ages (average age 10 years) and were not with their parents at the time of the burn. All had myelomeningocele (MM), almost all were community ambulators, and all had mid lumbar, low lumbar or sacral level function. There were no non-ambulators. In addition, the majority were wearing incontinence products. CONCLUSIONS: Children and adolescents with MM who are community ambulators, of an emerging independent age, and live in hot climates are at risk of environmental buttocks burns. Enhanced education in environmental thermal burn prevention is important. This education should be particularly focused on the child as they spend more time in settings without their parents. In addition, this enhanced education should extend to those who support the child or teen such as teachers, coaches, family and friends.
Keywords: Spina bifida, myelomeningocele, thermal injury, burn, environmental injury, child, adolescent, Southwestern United States
DOI: 10.3233/PRM-190607
Journal: Journal of Pediatric Rehabilitation Medicine, vol. 12, no. 4, pp. 369-374, 2019
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