What are the AAN/AANEM guidelines for educational adjustments in patients with congenital muscular dystrophy?

Updated: Aug 17, 2020
  • Author: Twee T Do, MD; Chief Editor: Jeffrey D Thomson, MD  more...
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Answer

Educational adjustments

The AAN/AANEM guidelines recommend referral to special education advocates, developmental specialists, and education specialists when appropriate for individual circumstances (level B). [77]

The International Standard of Care Committee consensus recommendations include the following [76] :

  • Children with mental retardation and learning issues should undergo psychometric testing and be referred to early intervention and augmented/specialized school and communication programs with dedicated evaluations and monitoring
  • For behavioral, emotional, and autistic problems, referrals to child psychology/psychiatry services
  • In α-dystroglycanopathies, detailed eye examination and subsequent follow-ups are indicated; if the child is visually impaired, appropriate education and services should be provided, given that visual impairment negatively affects learning and quality of life
  •  As coordinators of care, neurologists should act as advocates when working with day care, school, and other service providers and make sure that they understand the special needs of children with CMD

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