Key Management of Myotonic Dystrophy Type 1
Children affected by DM1 do make good progress with their motor skills and community-based physiotherapy should promote function and play to assist in development.
Because of difficulties in protecting their airway avoid prone positioning in the weakest children even beyond two years of age. However, it may be introduced as they gain strength and respiratory function.
Management also consists of supportive seating, standing equipment, stretches to maintain an improved range of motion, and orthotics are frequently used. Hydrotherapy can be useful.
Resources
There are yet no global standards of care established for DM1 however in 2018 The Myotonic Dystrophy Foundation (MDF) announced the publication of Consensus-based Care Recommendations for adults with DM1.
Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy. This is a document created by Tina Duong, PT, PhD Katy Eichinger, PT, PhD, DPT, NCS Department of Neurology, Stanford University, Palo Alto, CA Department of Neurology, School of Medicine and Dentistry, University of Rochester, Rochester, NY

