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
<div>Management of feeding and swallowing problems should be based on multidisciplinary assessment and can include the following strategies:</div>
<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>
<div>Assessment of feeding and swallowing should include the following:</div>
<ul>
<li>orofacial examination;</li>
<li>feeding and swallowing skills; and</li>
<li>seating and positioning.</li>
</ul>
<div>"The use of a video-fluoroscopic swallow assessment to objectively assess the swallow should be done by speech and language specialists" (p. 1570).</div>
<div>The following feeding and swallowing issues should be regularly screened during routine clinic visits:</div>
<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>
<div>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>
<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>
<div>"Speech therapy intervention may need to focus on compensatory communication strategies" (p. 1571).</div>
