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>
Assess for cognitive strengths and weaknesses (e.g., social cognition, receptive and expressive language ability). Assessments should be conducted at the following intervals:
<ul>
<li>at diagnosis;</li>
<li>preschool age; and</li>
<li>2 to 3 times before adulthood (depending on level of functioning).</li>
</ul>
In children with childhood-onset myotonic dystrophy, look for progressive speech impairment due to myotonia.
For children with myotonic dystrophy, refer to speech-language pathology services from an early age to manage swallowing problems, deficits in expressive and receptive language, and communication problems.
For children with congenital myotonic dystrophy who have skeletal muscle weakness, frequently look for speech therapy needs with specific attention to
<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>
