Your Child's Medical Team

Childhood onset 5q SMA (Types 1, 2 or 3) varies greatly in its impact. Now that some children are receiving drug treatments, there may be even greater variations. Whatever the impact of your child’s SMA, the International Standards of Care for SMA (SoC) recommend that their overall care should be guided by a specialist neuromuscular clinic and other relevant specialties. Depending on your child’s needs, these may include specialists in:

  • Breathing (respiratory specialists)
  • Nutrition (gastroenterology and dietetics specialists)
  • Bones and muscles (orthopaedic specialists)
  • Rehabilitation (physiotherapists and occupational therapists)

These specialists, and any others that your child needs, should work together as a multi-disciplinary team who will not only consider your child’s medical needs but also take into account and be respectful of any social, cultural and spiritual needs your family may have. 

The team may also include specialists in palliative care who have expertise in the control of complex symptoms. Palliative care is often only associated with end of life care when in practice it has a much broader focus of supporting your child’s physical, emotional and practical needs. It's there to help to make sure that your and your child’s life goals match treatment choices and to provide help to overcome any challenges you face. It's complementary to other forms of medical support. 

For a more complete list of possible specialists you might meet and what their role is, have a look at: Who’s Who of Professionals

Page last updated: July 2019