Looking for Dr. with expertise in photosensitivty

My 11 year old son was diagnosed with epilepsy in July 2014.  He has been on seven different medications all of which have not helped and/or he experienced horrible side effects missing over 20 days of school this year.  His Dr. at Children's in Milwaukee is quite perplexed by his case and has no other kid like him.  He is photosensitive and experiences eye rolling, and at times also head tilting and twitching to bright and/or flickering sun light.  His EEG is abnormal, but they have not been able to directly correlate the spikes in his brain waves to the eye rolling etc. During his stay at the EMU they were able to provoke (2) tonic clonic seizures.  One while on meds was much worse than the one that was provoked with no meds and sleep deprived.  His official diagnosis is localization-related focal partial epilepsy and epileptic syndromes with complex partial  seizures with intractable epilepsy.  In reality, it appears visually like Jeavons but his EEG does not match.  He is not a candidate for surgery and Dr. does not feel that VNS is risk is appropriate for "eye rolling".Yet it is ok that he can barely function on the meds.  His case was evaluated by the Epilepsy Board at Children's/Froedert with no real new recommendation.  Beyond the AED meds we have tried chiropractic and supplements - of which have not had a measurable effect.  We are now looking at ocean blue tinted lenses and polarized grey & ocean blue tinted lenses.   He is currently weaning off of Keppra and onto Zonegram.  Keppra made him very difficult and Zonisamide #7 is making him very ill. We live in NE Wisconsin, where there is only one neuro ped who we have already seen.  Looking for any suggestions of Drs at Mayo or Chicago or anywhere that might take difficult cases.  Thank you.