[Global management of infantile spinal muscular atrophy. Practical guide for medical staff]

Area of Science:

• Pediatric Neurology
• Rehabilitation Medicine
• Medical Technology

Context:

• Spinal muscular atrophy (SMA) and severe neuromyopathies present significant challenges in pediatric care.
• Effective management requires a multidisciplinary approach addressing multiple health domains.

Purpose:

• To propose a comprehensive care outline for children diagnosed with SMA or severe neuromyopathies.
• To detail strategies for optimizing respiratory function, preventing orthopedic complications, and enhancing daily living through technical assistance.

Summary:

• The proposed care plan emphasizes preventive respiratory support to facilitate pulmonary growth.
• Orthopedic management focuses on preventing contractures and kyphoscoliosis.
• Technical assistance methods are suggested to improve daily life and promote social inclusion.

Impact:

• Improved pulmonary function and reduced orthopedic deformities in affected children.
• Enhanced quality of life and greater familial and social integration for children with SMA and neuromyopathies.
• Provides a framework for evidence-based care and technological support in managing rare pediatric neuromuscular disorders.