Therapists involved in the care of children with SMA
While every child with SMA is different, there are a number of healthcare professionals that may be involved at different times. Your healthcare team will refer your child to the right professional when they are needed. This care, treatment and support is based on your child’s age, abilities and individual needs to help them manage daily activities. You can see the dropdown menu for more detail on healthcare professionals you might speak with such as General practitioner, Geneticist/Genetics counsellor, Neurologist (Paediatric), Nutritionist/Dietician, Occupational therapist, Paediatrician, Respiratory physician, Speech therapist, Physiotherapist, Social worker, and Nurse specialist.
We know that children who are treated quickly have better outcomes, and your healthcare team will work quickly so that your baby can be treated without delay.
We also know that babies who have the care of a team of people (multidisciplinary team) both in their local communities and in specialist teams have better outcomes. We want babies to thrive and that means they need the care of a whole team around them.
Nurse Specialist
They are an essential part of your team who manages care with the wider team and will co-ordinate treatments, provide support and education to help simplify your hospital visits.
General Practitioner
Your GP is a very important and will monitor your child’s health and treat usual childhood illnesses (e.g. fever, ear infections) and give immunisations. They will also look after your health and well being. They communicate with your specialists who know more about SMA.
Geneticist/Genetic counsellor
They help you understand genetics and inheritance, assist in reproductive decision making that is right for you and can help share information about SMA with other family members who want to know if they are carriers.
Neurologist (Paediatric)
A paediatric neurologist is a doctor who specialises in children’s medicine, and then even more specifically they specialise in neurological conditions and the brain. This is particularly important in the SMA world because your child’s nerves are impacted by the condition. They will have a role in diagnosis, treatment, and ongoing management.
Nutritionist/Dietician
Nutritionists/dieticians help your child get the right nutrition to maintain a healthy weight, muscle mass and overall health.
Occupational therapist
An occupational therapist helps your child to perform daily activities without help from others. They may use special devices and equipment.
Paediatrician
This person specialises in children’s medicine. They will likely meet with you and your child when you come to a hospital for consultations. They can also help working out what specialists you will need and when.
Physiotherapist
Physical therapy helps to improve and maintain your child’s muscle strength, flexibility and range of motion through exercise.
Respiratory physician
They assess breathing and coughing abilities. They help with keepp ing the airways clear, performing breathing exercises, and supporting breathing.
Speech therapist
A speech therapist helps with speech and swallowing.
Social and emotional support
Helps to support the mental health of you and your child. This can include counselling, support groups.