The deteriorating nature of a neuromuscular disease requires periodical and regular assessments of how personal and environmental factors are affecting the child’s social participation.
A lack of knowledge about the clinical diagnosis can lead to incorrect interpretations of the child’s difficulties and needs, and, consequently, a lack of support toward the child and parents in what they are experiencing.
The Clinic dedicates itself to the systematic monitoring of the disease’s deterioration rate, which varies from one person to another. Monitoring the disease’s progression serves to learn about losses; the rate at which they occur and the way in which they affect the child’s and family’s adjustment. It serves to anticipate any form of physical and psychological decline; to determine therapeutic or preventive interventions; and to identify short, medium and long-term solutions.
The Neuromuscular Diseases Clinic uses a service model that integrates both the child’s medical and rehabilitation needs for they are mutually dependent.
The clinical coordinator ensures that objectives are achieved by personalizing the services according to the individual needs of each client. The coordinator also acts as a resource to ensure service coordination with the different regional partners.
The ultra-specialized services provided by the Neuromuscular Diseases Clinic include:
Integrated counseling to children and youth aged 0 to 18 years, also consisting of:
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Periodical follow-ups, determined by the interdisciplinary team based on the child’s disorder;
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Drug management and control;
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Support in seeking assistive aids, best approaches, etc.;
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Decisions concerning respiratory supervision and assisted ventilation;
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Decisions concerning end-of-life options, when applicable.
Therefore, integrated counseling ensures that the decisions made and the directions taken by the CRME’s ultra-specialized service team are cohesive. This is crucial to achieving the identified objectives. The different organic systems affected by a neuromuscular disease require strict coordination between all members involved, most especially in more complex cases or during critical stages.
In order to recommend the best approaches and to adjust recommendations based on the child’s reality, the CRME team requires the regional rehabilitation centre’s expert input about the child, family and partners involved.