Jeavons Syndrome

Hello! I have a beautiful 12 year old daughter with Jeavons Syndrome. I would like to tell her brief story and see if anyone has any tips, tricks, warnings and suggestions since we are new to this. Her eye flutters started when she was about 6 and have continually gotten worse. We were told for years that it was just a tic and she would grow out of it. Unfortunately in May 2018 she had a full tonic-clonic seizure after school. After tests, she was diagnosed with Photosensitive epilepsy. She was put on and tried 2 different medications that did not work and experienced 2 more seizures, one at school and one at Sea World. After the one at school in August I had to take her out and put her in a home schooling program. She was finally at a breaking point after the Sea World incident. She is afraid to go outside when it's day time, her trigger is the sun. We have tried the darkest sunglasses you can find, a hat, and even an umbrella. Nothing works. So finally, we went to see a specialist who rediagnosed her with Jeavons Syndrome. It is so much more fitting for her than the Photosensitive epilepsy diagnosis. The doctor put her on Valproic Acid. We are praying for the best, hopefully getting her back to the happy loving preteen she was before!