Your son should have regular checkups with a specialist doctor who has the expertise to monitor how things are going and to understand if there is anything unusual that might need additional evaluation. This is important in order to make decisions about new treatments at the most appropriate time and to anticipate and prevent problems to the maximum extent possible. It is recommended that your son sees the doctor every 6 months and the specialist physiotherapist and/or occupational therapist about every 4 months if possible.
Tests used in different clinics to follow individuals with DMD may vary. The most important thing is that there is regular review so that interventions can be properly monitored. This regular assessment should include tests that help show how the condition is progressing, including:
Strength may be measured in a number of different ways to see if the force that can be generated at specific joints is changing.
This is done to monitor if contractures or joint tightening is developing and to help to guide what stretches or interventions will be most helpful.
Many clinics routinely time activities such as the time to get up off the floor, time to walk a certain distance, and time to climb several steps. This gives important information on how the condition is changing and how it is responding to treatment.
There are a large number of different scales, but your clinic should routinely use the same one to monitor the condition in a systematic way. Different scales may be needed at different times.
This allows the team to tell if some additional help might be needed to assist independence.
Information based on consensus statement (published in January 2010)