Photosensitive Epilepsy due to direct sunlight

[diannapop]

I am sorry to hear that your child has so many health issues. My daughter started having seizures in the sunlight when she was 8 years old. She is now 15, and she still gets absence seizures and does the same swiping motion you describe. She is on Zarontin and Topamax, but she continues to have seizures. Have you found a medication that helps your child with the photosensitivity? If so, I would like to know what works for you so maybe we can try it.

[Crystal11]

I have noticed the same thing with me when I was 6-until now 27. Keppra has taken care of this for me, the majority of the time.
My vision isn't good, I am blind but have residual vision and hearing (deaf without my hearing aids). I have a condtion called Nystagmus which uncontrolled movements of the eyes caused my a neurologist condition dealing with the nerves and muscles that move the eyes. My eyes shake all day long until I go to sleep- unconsiousness.
I see the whole room, everything shaking altogether which makes still things look like they are moving and moving things look like they are still.
I also have CVI/ cortical vision impairment meaning my brain cannot process info too well with everything shaking and doesn't process visual info in general very well. The connection between my brain and my eyes don't quite work normally.
I did notice that I have a spot that I have to turn my head to get my eyes to stop shaking, when really they are still shaking but not as noticable. Its call a null point.
I do stare at light sorses especially the sun, which can cause me to stare- or have a simple partial seizure.. Mostly from going out of a darker environment into the direct sun. Often I don't notice that I do this because it not me controlling this behavior. It just happens and I notice I'm doing it when my eyes are drying out or start to hurt where I had surgeries on the muscles..
While having an EEG, they said the flashing caused a driving responce, meaning that a seizure is possible with flashing lights or what not.
I did noticed that the sun causes problems but its better with Keppra XR and Lamictal. Sometimes my roommate or twin Sis notices me "going to the land of E" lol and asks me "What was that?" My eyes do down and to the right, but still open. My head goes to the right as if tracking something visually, and half my body goes to the right too somtimes. neurologist told me that my seizure are coming from the left side.
Sometimes young kids or babies will naturally want to look at the sun and wave their hands infront of their faces to create new visual experiences. My friend who has autism did this too. She was older but still, she did this as a way of seeing things differently or something else to focus on.

For your son, it might be seizure related or just something he does that's not seizure related.
The sun is full spectrum lighting and can cause many problems for people.
I wear "driveware lenses" that are specially made for my vision refractive error and other eye conditions. They are UV, polarized and transitions treated lense. cost $500 but they are awesome.
That does help with sunlight and other light problems.
I have been told about lavendar/light purple coloring on lenses or sun glasses helping with photosentive epilepsy- but it may not be for everyone.

Take care,
Crystal