My daughter 9F has a “tic” that appears to be related to photosensitivity.

She will flutter her hand in front of her eyes and look up slightly when exposed to sunlight. It started around 6. The doctors we have seen do not appear too concerned over it. However, this morning she said something that surprised me. As she was getting ready, she was putting on her shoes and stopped when the sun hit her eyes and she started to flutter her hand. We were in a hurry, and I told her, to just look away from the window so she could complete her task. At that point, she said, “Well, I can’t really look away. Like, I get locked in.” That’s the first I heard of that. I believe it’s definitely related to photosensitivity as she does not do it with sunglasses. The doctor did not believe it to be epilepsy. I was wondering if anyone has heard of a similar condition. Also, I am not sure if tic is the proper term or in any way offensive, so apologies in advance, if I used that incorrectly.

Edit to add: we have seen primary care and an eye specialist. No neurologist yet, as the eye doctor said that it’s common and she likely will grow out of it. They do not believe it’s Tourette’s.

Edit: Wow! I believe the comment below is correct:

https://www.reddit.com/r/AskDocs/s/dzkAgffbx7

I was already able to connect with the lead researcher, Dr Elizabeth Thiele’s office in Mass General Bingham. They are going to send a bunch of information and schedule a virtual meet n greet.

This video is so exactly the movements she exhibits I cannot believe what I’m seeing. It’s like looking at my own daughter. Thank you everyone! I know that this is not medical advice but I now have a plan.