I actually wrote this the morning before Cole had his post-ictal blindness spell last week. Talk about ca-razy!
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After having spoken to numerous doctors about Cole's condition, none of them have actually seen a patient who has experienced post-ictal blindness. They have only "heard about it".
Cole has experienced this phenomenon multiple times. He will not be able to see, even after coming out of a post-ictal sleep. The longest it has lasted is two and a half hours. The first couple of times it happened, we were extremely nervous. A number of things can happen during a seizure and we were afraid that he had lost his sight permanently. We now know that is not the case.
We usually know that he is blind when he does not react at all to an oxygen mask coming towards his face-he hates oxygen. He will not be able to focus, track objects and will not flinch if you bring objects rapidly towards his face, such as your hand. He will continue to be blind, even after he has regained function in all other body parts.
This does not happen after every seizure. However, it has happened enough to be classified as "normal". Normal for Cole :)
We had a thorough examination of his eye done under anesthesia, by an Opthamalogist. The structure of his eye is fine, the blindness is totally related to his neurological condition.
We feel that his occipital lobe is extremely involved during theses seizures and possibly damaged. This would also give reasoning for his photosensitivity to light and patterns. His FL-41 lenses help.
So, if your child ever seems like they are blind during a seizure and it continues long after their normal post-ictal period, know that it is rare...but possible. I would suggest adding an Opthamolgist to your long list of doctors. If your child has Dravet, they are probably photosensitive. I would highly suggest looking in to FL-41 lenses. We order ours from the Moran Eye Center in Salt Lake City, UT.
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That is so crazy! I am glad that Cole is okay. I wonder if there is a comprehensive list anywhere of potential post-ictal occurances. It would be helpful to refer to when dealing with something new! We had Todd's paresis once and I was terrified that Simon had suffered another stroke.
ReplyDeleteVery interesting Niki. I had never even heard of this happening until your post last week.
ReplyDeleteIt may sound strange, but I don't know if Ben is photosensitive yet. Maybe that just means he's not since we haven't noticed anything...or that I don't know what the signs are. What should I be looking for?
@ Laura-I wish there was a list! I also wish that all neuro's passed it out. Wouldn't that be nice?! We too have Todd's Paralysis often and the first couple of times I was certain he had a stroke.
ReplyDelete@Amy-You would know if Ben was photosensitive by process of elimination. It doesn't happen to all Dravet kids, but most. Cole started to really show signs around 18 months. Every time we went outside, or near a window, he would have more seizures. It can also occur with fluorescent lighting. The right kind of glasses help.