Consensus Statement on Standard of Care for Congenital Muscular Dystrophies
Journal of Child Neurology
Wang, C. H., Bonnemann, C. G., et al. (2010).
Journal of Child Neurology, 25(12), 1559-1581.
This is a consensus guideline providing recommendations on the management and care for individuals with congenital muscular dystrophies.
International Committee on Standard of Care for Congenital Muscular Dystrophy
Management of feeding and swallowing problems should be based on multidisciplinary assessment and can include the following strategies:
<ul>
<li>adaptations to positioning and seating;</li>
<li>supports for self-feeding (e.g., adapted utensils);</li>
<li>safe swallowing techniques; and</li>
<li>texture modification.</li>
</ul>
Assessment of feeding and swallowing should include the following:
<ul>
<li>orofacial examination;</li>
<li>feeding and swallowing skills; and</li>
<li>seating and positioning.</li>
</ul>
"The use of a video-fluoroscopic swallow assessment to objectively assess the swallow should be done by speech and language specialists" (p. 1570).
The following feeding and swallowing issues should be regularly screened during routine clinic visits:
<ul>
<li>length of mealtimes (should be no more than 30 minutes);</li>
<li>frequency of meals;</li>
<li>amount of pulmonary infections;</li>
<li>difficulties chewing (e.g., choking, coughing);</li>
<li>food texture modifications;</li>
<li>the child’s or parents’ stress or enjoyment of mealtimes;</li>
<li>ability to feed independently; and</li>
<li>position of feeding.</li>
</ul>
If any difficulties from above are identified or if nutritional problems are present, then further assessment should be conducted by specialists with experience in feeding and swallowing evaluation.
<div>No evidence supports the use of isolated oral motor exercises to increase the strength of oral musculature or improve speech; however, oral motor therapy and exercises may help oral sensory function and prevent oral aversions from developing.</div>
"Speech therapy intervention may need to focus on compensatory communication strategies" (p. 1571).
