Yes see a ophthalmologist that specializes in cornea-external disease. Find one near you at www.aao.org You should be able to be helped.
My son suffers exactly as you do. He is 7 years old and has had a miserable 3 years so far with no end in sight. After trying tons of drops we are now also on restasis like you as well as chromolyn drops which I am not finding much help with. He wakes up screaming and the morning routine is insane because he cannot see due to the severe light sensitivity. He often cannot get on the school bus and has missed so much school because of this. I am SO happy to find someone else with this condition as I have searched and searched and found no one! I am trying to find another doctor to see and I am willing to travel if I have to because my 3 doctors I have seen during the 3 years have nothing else to offer me, meanwhile my son cannot function day to day with this. I am desperate to find help! maybe we can provide one another ideas or thoughts....or even support :)
Be sure that you have discussed with your ophthalmologists the use of cromolyn sodium eye drops or off label use of restasis.
I am in desperate need of help in locating a doctor in the US (preferably NY metro are that specializes in this condition. Nothing is helping my son..I have need to many doctors and have been in the care of a pediatric ophthalmologist that tells me we are doing all we can do. it is not good enough. My 7 year old can still not function and is missing many days of school due to his light sensitivity and blurry vision with burning. Someone somewhere must know more about options we have to treat this. I would appreciate any help anyone can offer!
You need to find an ophthalmologist(s) that you can get to regularly. In NY the Manhattan Eye and Ear Hospital is excellent http://www.lenoxhillhospital.org/departments.aspx?id=308
Wilmer Eye Institute at Johns Hopkins is world famous as is Massachusetts Eye and Ear Hospital (Harvard faculty)