![]() Paediatric Neurologist* |
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Paediatric neurologists are often the first specialists to meet with the
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Primary concerns may include:
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Common assessments may include:
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Short- and long-term management may include:
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![]() Paediatric Pulmonologist |
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Paediatric pulmonologists work closely with children with spinal muscular atrophy who may have decreased respiratory function due to issues such as underdeveloped lungs or a weak, ineffective cough.3 |
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Primary concerns may include2:
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Common assessments may include2:
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Short-term management may include2:
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For related information on caring for children with SMA, click here. |
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![]() Physiotherapist |
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Exercise and the use of orthotics and other rehabilitative equipment may be recommended by a physiotherapist. These decisions may be based on the age of the individual with spinal muscular atrophy, neuromuscular involvement, and developmental stage.3 |
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Primary concern2:
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Common assessments may include2:
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Short- and long-term management may include2:
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![]() Orthopaedist* |
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Muscular weakness often leads to orthopaedic issues in children with spinal muscular atrophy, resulting in skeletal misalignment and difficulty with movement, which may require intervention by an orthopaedist.2 |
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Primary concerns may include2:
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Common assessments may include2:
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Short-term management may include2:
Long-term management may include2:
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For related information on caring for children with SMA, click here. |
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![]() Dietitian* |
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Children with spinal muscular atrophy may have difficulty eating due to weak swallowing muscles and poor head control, putting them at risk of aspiration and/or poor nutrition. These issues may require the guidance of a dietitian with experience in spinal muscular atrophy.4 |
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Primary concerns may include2:
A dietitian may consult with other healthcare providers (e.g. gastroenterologists, surgeons) about short- and long-term management of feeding and pharmacologic issues. |
Short-term management may include4:
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Long-term management may include2,4:
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For related information on caring for children with SMA, click here. |
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![]() Parent/Caregiver |
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Parents/caregivers of children with spinal muscular atrophy, such as Dany and Terence S., often become experts in their child’s care and are important members of the multidisciplinary care team. |
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Other care team members may include:
Child psychologist
Child psychologists can provide counselling and guidance on a wide range of psychological and social problems that may arise, including:
- Emotional and developmental problems
- Coping with stresses related to school
- Psychological difficulties for siblings of children with spinal muscular atrophy
Genetic medical counsellor
Genetic counsellors can provide information on the consequences and genetic background of spinal muscular atrophy. They can advise families on the likelihood of developing or transmitting the disease, suggest genetic carrier testing for the parents and other children in the family, and the available options in management and family planning.
Occupational therapist
While a physiotherapist can assist with increasing overall mobility through exercise and assistive devices, an occupational therapist helps individuals increase their independence in specific everyday tasks like dressing, bathing, or handling utensils. They may recommend adaptive equipment or home modifications, such as the installation of ramps or widening of doorways.
Paediatric anaesthetist
Paediatric anaesthesiology is another important aspect in the care of children with spinal muscular atrophy who may have to undergo surgery such as tracheostomy or spinal stabilisation. They handle planning of care before, during, and after surgery, as well as delivering anaesthesia.
Paediatrician
A paediatrician is a medical doctor who has been trained to diagnose and treat a broad range of childhood illnesses, from minor health problems to serious diseases.
NMD nurse
An NMD nurse can be an important first-line caregiver given the risk of respiratory illness and works closely with children and families in hospitals. She can provide you with educational materials and connect you with support groups such as SMA Europe to improve your understanding of the disease.
REFERENCES
1. Darras BT, Royden Jones H Jr, Ryan MM, De Vivo DC, eds. Neuromuscular Disorders of Infancy, Childhood, and Adolescence: A Clinician’s Approach. 2nd Ed. London, UK: Elsevier; 2015. 2. Wang CH, Finkel RS, Bertini ES, et al; and Participants of the International Conference on SMA Standard of Care. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol. 2007;22(8):1027-1049. 3. Spinal Muscular Atrophy Clinical Research Center. Physical/occupational therapy. http://columbiasma.org/pt-ot.html. Updated March 14, 2013. Accessed April 18, 2016. 4. Cure SMA. Tube feeding and SMA: recommendations and practices. http://www.curesma.org/documents/support--care-documents/2015-conference-tube-feeding.pdf. Published June 20, 2015. Accessed April 25, 2016.
How does a parent/caregiver assemble a multidisciplinary care team?
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