A Paediatric Neuromuscular Clinic is a specialty service for children with neuromuscular disorders and their families. Assessments, education, training of care providers, recommendations for equipment, treatment options and school adaptations are available and individualized according to the needs of each child.
The Paediatric Team is usually an interdisciplinary group of health care providers with a wide range of experience. The health care providers on the team may include: neurologist, physiotherapist, occupational therapist, speech-language pathologist, physiatrist, registered dietitian and social worker. There may be other health care providers who consult as required, including: an assistive technology expert, wheelchair-seating expert, psychologist, cardiologist, orthopedic specialist and gastroenterologist.
Depending on the clinic you attend, a representative from Muscular Dystrophy Canada may be present during the clinic visits as an additional source of information and support. One of the many things that we offer families is the opportunity to connect with other families who have faced similar situations or Community Volunteer Chapters and Networks.
The clinic visit may last an hour or two or take the full day. This depends on the therapists that the child needs to see and upon the type of appointment needed. If the child needs to rest during the day, staff are usually able to find a suitable room for this purpose. In most instances, families should plan to be at the clinic for at least half the day. If you need to arrange for special meals or transportation, discuss timing with the clinic coordinator prior to the visit.
Children with neuromuscular disorders should be evaluated at least once a year. It might be more frequent depending on the condition and other health care providers involved in caring for the child. By having a full clinic review with a selection of team members on a yearly basis, it is hoped that issues are detected early and perhaps prevented from worsening by modifying equipment, positioning, nutritional supplementation, etc.
Let your child know that several different doctors and health professionals will be asking questions and doing assessments during the clinic visit. Clinic staff may evaluate the child independently or as a team.
Most of the examination is by observation, and is not considered to be invasive. The child will be asked to perform various activities, such as walk or climb stairs or touch toes or play.
Usually, there is a “wrap-up” meeting with all health care providers and caregivers involved with the child. Recommendations for maximizing strengths and overcoming or minimizing weaknesses will be discussed, and families will have an opportunity to ask questions of the various team members. Some clinics will send a follow-up report to parents and/or the child’s family doctor or paediatrician. This report typically summarizes the evaluations and recommendations from the visit and any further action needed.