In the early non-ambulatory phase the boy needs to use a wheelchair. To start with he may be able to wheel the chair himself and typically his posture is still good (see Rehabilitation Management).
Despite the backdrop of the condition progressing, an increasing emphasis on independence is necessary to encourage normal participation in school and fun activities through adolescence.
Attention to tightness in the upper limbs (shoulders, elbows, wrist and fingers) becomes very important, as does the need for supporting equipment to help keep your son standing. Spinal curvature (scoliosis) is seen much less often with the widespread use of steroids, but monitoring for this is still very important following the loss of ambulation. In some cases scoliosis progresses quite rapidly, often over a period of months (see Orthopaedic Management). Orthopedic input may also be needed to deal with problems with foot posture which can cause pain or discomfort and limit the choice of footwear.
Maintenance of steroid treatment continues to be an important part of management in this phase (see Neuromuscular Management) whether started previously and continued into this phase or started at this stage.
Monitoring of cardiac function at yearly intervals is still essential and any deterioration should be treated promptly (see Cardiac Management). Respiratory function is likely to begin to decline after loss of independent walking and a staged series of interventions to help with breathing and to aid with coughing needs to be introduced (see Pulmonary Management).
Information based on consensus statement (published in January 2010)