Intervention & Follow-up of Neuromuscular Diseases
Most of the inherited neuromuscular disorders are not curable (e.g. muscular dystrophy disorder), but management can be done to help alleviate symptoms and control related complications, providing an improved quality of life.
Depending on your child’s condition, our neuromuscular team will recommend the appropriate interventions and follow-up. As many neuromuscular diseases are multi-system disorders affecting multiple organ systems, we may suggest further consultation with other subspecialty team(s) that is necessary for your child.
- Pharmacologic Treatment
In addition to medications to slow down muscle weakness and the decline in motor function, medications may be used to treat specific problems/complications (such as heart/respiratory related problems, seizes, and etc.) associated with the concerned neuromuscular disorder.
- Therapies
- Physical therapy - This aims to allow your child to maintain ambulation for as long as possible, to stretch tight muscles and not to damage joints. This includes certain posture training, a range-of-motion & stretching exercises as well as low impact aerobic exercise (such as swimming and walking) to improve flexibility and strength. It is important to consult with your doctor first, since too much physical activity as well as some types of exercises can make muscle damage worse.
- Occupational therapy - This aims to help your child cope with daily life needs and to learn how to adapt to and use specific equipment for certain tasks. Examples are braces to keep muscles and tendons flexible and supported, mobility aids such as canes, walkers and wheelchairs, breathing assistances such as ventilators and sleep apnea devices, and oromotor intervention for feeding and swallowing problems.
- Speech and recreational therapy - Speech therapy helps your child with progressive facial weakness and to help him/her continue speaking and swallowing. Recreational therapy facilitates your child’s participation in educational and leisure activities.
- Orthopaedic therapy and surgery - For more severe cases of neuromuscular disorders, surgery may be needed for progressive scoliosis and development of contractures in order to maintain normal respiratory function.
- Other intervention/support
- Family support
- Educational support
- Clinical psychology service: psychotherapy for coping and emotional needs of patient, and their carers