Consensus-Based Care Recommendations for Children With Myotonic Dystrophy Type 1
Johnson, N., Campbell, C., et al. (2019).
San Francisco (CA): Myotonic Dystrophy Foundation.
This is a consensus-based guideline providing recommendations for children with congenital or childhood onset myotonic dystrophy type 1.
Myotonic Dystrophy Foundation
<p>This guideline was reviewed with the following supporting document:</p><ul><li>Johnson, N. E., Aldana, E. Z., et al. (2019). Consensus-Based Care Recommendations for Congenital and Childhood-Onset Myotonic Dystrophy Type 1. <em>Neurology: Clinical Practice, 9</em>(5), 443-454.</li></ul>
<div>Assess for cognitive-communication strengths and weaknesses including areas such as social cognition and receptive and expressive language ability. Assessments should be conducted at the following intervals:</div>
<ul>
<li>at diagnosis;</li>
<li>preschool age; and</li>
<li>2 to 3 times before adulthood (depending on level of functioning).</li>
</ul>
<div>In children with childhood-onset myotonic dystrophy, look for progressive speech impairment due to myotonia.</div>
<div>For children with myotonic dystrophy, refer to a speech-language pathologist from an early age to assess and treat swallowing problems, deficits in expressive and receptive language, and communication problems.</div>
<div>Children with congenital myotonic dystrophy who have skeletal muscle weakness should be frequently screened for speech therapy needs including:</div>
<ul>
<li>feeding concerns and dysphagia;</li>
<li>dysarthria and potential augmentative and alternative communication (AAC) needs; and</li>
<li>language acquisition delays.</li>
</ul>
