Treatment and Care for Children with Very Severe Mental and Physical Disability
Download PDF

Keywords

Special healthcare needs
Home-based care
Best supportive care

DOI

10.26689/ijgpn.v1i1.5043

Submitted : 2024-04-14
Accepted : 2024-04-29
Published : 2024-05-14

Abstract

We present two cases of severely disabled children who required tracheotomy and ventilatory management under long-term care at home. Both cases were infants who had survived life-threatening crises during the perinatal period and infancy. Even if their conditions have stabilized, they are always at risk of sudden changes. There are several preconditions for the long-term survival of such children, in which family plays a considerable part. Medical personnel should provide the best supportive care in both acute and chronic phases.

References

Sugimoto K, Kawahara N, Tanaka H, et al., 2008, Current Status and Problems of Medical Care for Children with Very Severe Mental and Physical Disabilities: A Questionnaire Survey in Eight Prefectures in Japan. Journal of the Japanese Paediatric Society, 112(1): 94–101.

Shewmon DA, 1998, Chronic “Brain Death”: Meta-Analysis and Conceptual Consequences. Neurology, 51(6): 1538–1545.

Sasaki S, 2013, Personal Views on Childhood Brain Death from the Perspective of Severely-Retarded Medical Care. Brain and Development, 45(1): 5–10.

Myers S, Scinasi DA, Nadel FM, et al., 2021, Cardiopulmonary Resuscitation: Fleisher & Ludwig’s Textbook of Pediatric Emergency Medicine 8th Ed., Shaw KN& Bachur RG, Wolters Kluwer, Philadelphia, 43–71.

McGovern MM, Desnick RJ, 2020, Lipidoses (Lysosomal Storage Disorders), in Nelson Textbook of Pediatrics 21st Ed., Elsevier, Philadelphia, 772–773.

Tanabe T, Tanaka H, Hara K, et al., 2009, Five Cases of Long-Term Brain Death in Children and the Problem of Pediatric Brain Death Determination in Japan. Journal of the Japanese Paediatric Society, 113(3): 508–514.

Komaki H, 2012, Best Supportive Care for Muscular Dystrophy. Journal of the Japanese Paediatric Society, 116(4): 655–665.