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Pediatric Neuromuscular Disorders

Since 2023, the pediatric neurology clinic at Karolinska and the children's neurology clinic in Gothenburg have been responsible for national highly specialized care regarding neuromuscular diseases.

In the case of an established neuromuscular disorder, regular follow-ups are carried out by our muscle team. Children with diseases such as spinal muscular atrophy, Duchenne's and Becker's muscular dystrophy, other forms of primary non-inflammatory muscle diseases, neuromuscular transmission disorders, metabolic muscle diseases, and polyneuropathies are observed in our unit. 

In addition to medical assessments, the investigation may also include assessments by occupational therapists and physiotherapists, blood samples, neurophysiological examinations, muscle biopsies, and genetic analyses. 

The patients and their caregivers meet us for half or full-day assessments at our rehabilitative care department. We start with a joint registration where the doctor, occupational therapist, physiotherapist, and nurse, together with the caregivers, go through what has happened to the child regarding preschool/school, habilitation, development, etc., since the previous check-up. If necessary, a nutrition assessment with a dietician is included. 
 
The day continues with specific assessments by an occupational therapist (including hand function, perception, and assistant devices) and a physiotherapist (including joint mobility, muscle strength, function, orthoses, and shoes). 
 
We end the team assessment with a joint discharge, summarizing the day and discussing the planning and our common goals. 

The muscle team takes care of children with neuromuscular diseases. Our team consists of child neurologists, nurses, dieticians, occupational therapists, and physiotherapists. 
 
We also have close contact with orthopedists, orthopedic engineers, dentists, cardiologists, pulmonologists, and counselors, among others. Important collaboration partners outside the hospital are the habilitation, preschool and school, and staff/assistants. 
 
Our goal is to ensure that our patients receive the best possible care and to prevent and counteract future complications. The team contributes with competence and experience for the child, the parents, staff in child rehabilitation, assistants, school staff, and other people involved in the child's life in one way or another.  

The Astrid Lindgren Children’s Hospital is a part of Karolinska University Hospital, with facilities in several locations in Stockholm.