This is a very unusual problem and your best bet would be to seek care at the closest national class tertiary ophthalmology program you can get to. He may need the services of both pediatric ophthalmologist and neuro-ophthalmologists.
Since you don't list where you live what I'm talking about are programs like: Mayo Clinic, Wilmer Institute of Johns Hopkins, Bascom Palmer U of Miami, Emory, etc.
JCH MD