Assisting the Person with Nystagmus Beyond the Office: Infantile Nystagmus Syndrome

Abstract

ABSTRACT Infantile nystagmus presents many challenges for clinicians when defining the characteristics, etiology, visual capabilities, and optimal visual aids for the affected individual. However, life beyond the office may present the greatest challenges from the point of view of the child and their family. Research related to the psychosocial implications and quality of life for these individuals, as well as information related to systems that support their educational and social development, are infrequent in the ophthalmic literature. The purpose of this report is to briefly outline our local pediatric ophthalmic approach for these patients, to present a limited review of applicable literature, and to introduce our regional support system that addresses educational and psychosocial challenges for children and families affected by infantile nystagmus syndrome.