Originally appeared: September 2020 Newsletter
DIETICIAN
A dietitian is a qualified health professional who assesses, diagnoses and treats dietary and nutritional problems. Nutrition is important for all children with SMA to promote and maintain growth and motor function. Children may experience over-or under-nourishment, which can affect bone strength, growth and overall mobility. Experts recommend routine consultations by a dietitian to monitor calorie, fluid and nutrient intake.
For children with non-sitter (Type 1) and sitter (Type 2) SMA, a dietician will tailor your child's diet and how it is provided to their care needs. For children with walker (Type 3) SMA, a dietician will monitor their diet to prevent them from becoming overweight.
ORTHOPAEDIC SURGEON
An orthopaedic surgeon specialises in the surgical and non-surgical treatment of conditions of the muscles, bones and joints. Children with SMA are at risk of problems such as muscle weakness and muscle wasting. Curvature of the spine (scoliosis) is a problem in children with sitter (Type 2) SMA but can also happen in those with walker (Type 3) SMA who become unable to walk.
An orthopaedic surgeon is mainly involved in treating scoliosis in children with sitter (Type 2) SMA, but also if it happens to children with non-sitter (Type 1) and walker (Type 3) SMA. They may recommend treatments such as postural support (bracing) or surgery.
PHYSIOTHERAPIST
A physiotherapist is a medical professional trained in physiotherapy, which is the treatment that helps to maintain or restore movement and function when someone is affected by injury, illness or disability. Physiotherapists consider the body as a whole, rather than just focusing on the individual aspects of an illness.
Stretching and strength training is an important part of care for everyone with SMA. A physiotherapist or other physical therapy specialist can evaluate your child's range of motion, muscle strength and mobility and supervise regular therapy sessions to maintain or improve these. They can also recommend exercises or assistive devices that you can use at home to help your child maintain their mobility.
A physiotherapist or respiratory therapist will also help with breathing problems in children with non-sitter (Type 1) and sitter (Type 2) SMA, for example by providing chest physiotherapy to help clear a child's secretions and providing respiratory range-of-motion therapy. They can also provide advice about the best position for a child's breathing and comfort.
Physiotherapists may also provide advice on positioning and seating to help with feeding problems in children with non-sitter (Type 1) and sitter (Type 2) SMA.
GENETIC COUNSELLORS
A genetic counsellor is a healthcare professional who has expert training in genetics. They can provide information on the genetic causes of SMA, the consequences of having SMA and how SMA is inherited. They can tell you whether genetic carrier testing is appropriate and the chances of developing the disorder or passing it on to your children.
OCCUPATIONAL THERAPISTS
Occupational therapists help people increase their independence in specific everyday tasks like dressing, bathing or handling utensils. They may recommend adaptive equipment or home modifications, such as installing ramps or widening doorways.
NURSE SPECIALIST
Nurse specialists work closely with children with SMA, and their families, while in hospital. They can give you support and educational materials and can connect you with support groups such as CureSMA to help improve your understanding of SMA.
REFERENCES
Kolb S, Kissel J. Spinal Muscular Atrophy. Neurol Clin. 2015;33(4):831-846.
Mercuri E, Finkel R, Muntoni F et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscular Disorders. 2018;28(2):103-115.
Prior T, Finanger E. Spinal Muscular Atrophy. Ohio: GeneReviews®; 2016:1 - 5.