| Description |
This was a facilitated case discussion with participants from multiple disciplines providing information from their discipline specific perspectives on particular intervention strategies that are useful in working with children who are making limited progress and exhibit significant delays. Each participant offered information on their work with a child and family and shared their expertise from their discipline specific perspective to educate other participants on different approaches. Participants shared strategies they have found helpful and offered education and support to each other and discussed how to implement the strategies. This case discussion focused on the genetic mutation NGLY1: differing presentations, prognosis and treatment options. Explored caregiver feelings and their coping mechanisms in order to better understand behaviors and expectations. Also explored family dynamics and how they may be influencing participation in therapies. Addressed ways to support the family including therapy options, equipment and the relationships between caregivers and providers.
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