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Information about opsoclonus myoclonus

S My son has a rare disorder called opsoclonus myoclonus. (Myoclonus is a neurological movement disorder characterized by sudden, involuntary contractions of skeletal muscles. Opsoclonus is a condition in which there are nonrhythmic vertical and horizontal movements of the eyes.) He has a very unsteady gait, tremors in his hands, eye movement disorder, night terrors, temper tantrums, and speech delays. We have started intravenous immunoglobulin treatments and are cautiously optimistic. Is there anyone who can share information on doctors, treatments, success stories, etc?

--KD, via the EP Web site

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