Surveillance
- While a boy with DMD is still walking, minimal assessment of pulmonary function (such as measurement of forced vital capacity [FVC] at least annually) allows the child to become familiar with the equipment and the team to assess the maximum respiratory function achieved.
- The main emphasis of pulmonary assessment is after the loss of independent walking, and should include FVC measurement and peak cough flow. Other measures may also be useful, including studies of oxygen levels during sleep, and should be introduced as time goes by. Assessment frequency will depend on the stage of the condition, but at a minimum FVC measurement should be done at least every 6 months.
It is very important to look out for the kinds of signs that suggest your son may be having trouble breathing as he gets older. If you think you are seeing any of these you need to report them to your physician. Contact your physician if your son:
- is experiencing prolonged illness with apparently minor upper respiratory infections. For example, recovery from common colds is slow, with colds progressing to chest congestion and bronchitis, often requiring antibiotic therapy;
- is more tired than usual;
- is short of breath, acts as if he cannot catch his breath or has difficulty finishing sentences;
- has headaches all the time or in the morning;
- is often sleepy for no reason;
- has trouble sleeping, wakes up a lot, has trouble waking up or has nightmares;
- wakes up trying to catch his breath or says he can feel his heart pounding;
- has trouble paying attention.
