Speech-language therapists (SLTs) are often involved in the care of children with muscle disorders. There are many different, all rare, muscle disorders in which muscle weakness is the main cause of problems with chewing, swallowing, and speech. The symptoms are diverse, but malnutrition, choking, and aspiration pneumonia are examples of possible serious consequences. Our research showed that these problems often occur, and therefore, periodic screening of these children by the SLT is important. Due to the rarity of muscle disorders, there is limited knowledge and experience among SLTs regarding the best treatment. Based on the literature and the current expertise, research has been conducted on treatment options, resulting in guidelines for SLTs. Additionally, a study has been conducted on parental experiences. Parents consider it important that the treatment is personalized, taking into account the child and their environment. Factors such as fatigue and limited capacity should be considered.
Mieke Kooi-van Es (1976) has been working as a speech-language therapist at Klimmendaal Rehabilitation Center since 2001 and obtained her master's degree in speech and language pathology from Radboud University in 2017. Her master's research led to the start of a PhD trajectory in 2019 in the rehabilitation department of Radboudumc.