I came across your video of your sweet little son this morning on youtube while looking into my own seizure disorder. I have photosensitive epilepsy and was diagnosed when i was about your sons age, i am 28 now and 7 years seizure free. I would suffer partial and tonic-clonic seizures. I would have some in the car due to the visual movement and rapid light changing that occurs. Simple things like moving from inside the house to outside (light change) would cause problems. light filtering through trees etc. at home my seizures would happen mostly in the morning (waking up/adjusting to light) and or near the tv/computer sound and stimulating light again. patterns/ and colors (reds with a contrasting background)
a few thoughts i had for you especially in the car, 1. maybe move his car seat to the other side and cover the window closest to him, or maybe a makeshift hood on his car seat, similar to that you find on babies seats....or give the cool little dude some sunglasses if he'll wear them, i did and loved it, that may help cut down the glare of the sun too. its all stuff to think about. feel free to contact me if you have any questions.
Oh that poor baby :( That is just so heart breaking to see and hear about. I hope things start to get better for you now that you have a diagnosis. My son also has this but he does not quit breathing like that. Prayers for you and Connor ♥
hi Aileen how are you?
ReplyDeleteI came across your video of your sweet little son this morning on youtube while looking into my own seizure disorder. I have photosensitive epilepsy and was diagnosed when i was about your sons age, i am 28 now and 7 years seizure free. I would suffer partial and tonic-clonic seizures. I would have some in the car due to the visual movement and rapid light changing that occurs. Simple things like moving from inside the house to outside (light change) would cause problems. light filtering through trees etc. at home my seizures would happen mostly in the morning (waking up/adjusting to light) and or near the tv/computer sound and stimulating light again. patterns/ and colors (reds with a contrasting background)
a few thoughts i had for you especially in the car, 1. maybe move his car seat to the other side and cover the window closest to him, or maybe a makeshift hood on his car seat, similar to that you find on babies seats....or give the cool little dude some sunglasses if he'll wear them, i did and loved it, that may help cut down the glare of the sun too. its all stuff to think about. feel free to contact me if you have any questions.
-Alannah
Oh that poor baby :( That is just so heart breaking to see and hear about. I hope things start to get better for you now that you have a diagnosis. My son also has this but he does not quit breathing like that. Prayers for you and Connor ♥
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