Parents of infants or young children with Chiari

My son was born 15 weeks premature. He is 12 months old (9 months adjusted). His chiari malformation was incidentally diagnosed by a Brain MRI checking on a scalp hemangioma he has had since he was months old. His pediatrician has referred us to Dr. Menezes at the University of Iowa Hopital. His appt is next Wed. Sept. 28th. I was wondering if there are other parents out there that are dealing with this with their children, particulary at the infant stage. What kind of symptoms did they have? What treatment/s have they received. How often are they monitored and how are they monitored. Thanks for your input.