I know many on here talk about the period after a seizure, and I've been trying to find some references, but can't seem to figure out why my son seems to have a much longer recovery time than everyone else on this board.
He doesn't have tonic clonics, which I can actually see why the recovery time would be much longer, because the t/c lasts longer, and the whole body gets involved, so I can see why most people need to sleep for 2 days post-seizure.
My son only has absense seizures. They are so short, most people don't even recognize them. I think the longest might reach 20 seconds, but that is definitely reaching. So, from what I see, only the brain is affected by these seizures. I don't see any automatisms at all during these seizures. I think only once, he was wiggling his fingers. The rest of the time, he sits motionless, for the duration of the seizure. So why does his brain need 3-5 days to recover? I mean it's really bad! It's like his brain goes into a defense mode or something. He doesn't participate in conversation and when he does, he may say something that's completely off topic. He is always hungry, usually fixating on a particular food group, and can't get it out of his head. Last Saturday, he wanted bacon. He wanted it more than anything! After he had some, about an hour later, he wanted lunch. He kept coming out of his room asking what time it was, only because he wanted to see if it was lunch time so he could eat again!
He does these annoying things to his brother, like putting his feet on his brother's chair, or throwing things at him. He sticks things into his mouth. He put an entire rubber bracelet in his mouth, and was chewing it! Like so many others on this board, his short-term memory is gone, but it does eventually come back. That usually takes a good week to come back, even after the post-ictal phase is over. His concentration is definitely gone, so he misses school because he is incapable of doing any kind of work. He really acts loopy. Yesterday, he asked me 6 times what day it was. Then, he asked me another couple of times where his brother was. When I told him his brother was at school, he asked why he was at school. A few seconds later, he totally forgot what we were discussing.
Since I don't have seizures, it is really difficult to put myself in his shoes. I try very hard to understand what he is going through. When the post-ictal phase is over, he talks about it, but only a little. He equates it to a bad dream, because he will say, "did I really do that?" or "did this really happen, because I thought I was dreaming?".
The only conclusion I could come up with is that he is actually having clusters of seizures, and maybe we are only seeing 1, but he's having many. Because, how could 1 possibly affect his brain this much?
I did have another hunch though. When he was hospitalized last year before his diagnosis, he was first brought to the emergency room after a weekend of "zoning out". He was not loopy (though he was at his father's house, but when I talked to him on the phone, he didn't act loopy, and when I saw him in the emergency room, he acted fine, except for those brief moments of staring). He didn't get his epilepsy diagnosis until 2 days later. And, his neurologist said he was having seizures every few minutes (according to the EEG), and they were about 10 seconds in duration. He didn't start acting loopy until that first night they admitted him into the hospital (which was 2 days after the first witnessed seizure). So, could it be that his brain is trying to protect itself against damage? So that from now on, even though he only experiences 1 seizure, that it could just revert back to that loopy state?
I'm sorry if this post is so long. I have a lot on my mind, and I'm still trying to wrap my head around this. You'd think that since I've been dealing with this for over a year, that it would get easier, but it just gets more frustrating.
He doesn't have tonic clonics, which I can actually see why the recovery time would be much longer, because the t/c lasts longer, and the whole body gets involved, so I can see why most people need to sleep for 2 days post-seizure.
My son only has absense seizures. They are so short, most people don't even recognize them. I think the longest might reach 20 seconds, but that is definitely reaching. So, from what I see, only the brain is affected by these seizures. I don't see any automatisms at all during these seizures. I think only once, he was wiggling his fingers. The rest of the time, he sits motionless, for the duration of the seizure. So why does his brain need 3-5 days to recover? I mean it's really bad! It's like his brain goes into a defense mode or something. He doesn't participate in conversation and when he does, he may say something that's completely off topic. He is always hungry, usually fixating on a particular food group, and can't get it out of his head. Last Saturday, he wanted bacon. He wanted it more than anything! After he had some, about an hour later, he wanted lunch. He kept coming out of his room asking what time it was, only because he wanted to see if it was lunch time so he could eat again!
He does these annoying things to his brother, like putting his feet on his brother's chair, or throwing things at him. He sticks things into his mouth. He put an entire rubber bracelet in his mouth, and was chewing it! Like so many others on this board, his short-term memory is gone, but it does eventually come back. That usually takes a good week to come back, even after the post-ictal phase is over. His concentration is definitely gone, so he misses school because he is incapable of doing any kind of work. He really acts loopy. Yesterday, he asked me 6 times what day it was. Then, he asked me another couple of times where his brother was. When I told him his brother was at school, he asked why he was at school. A few seconds later, he totally forgot what we were discussing.
Since I don't have seizures, it is really difficult to put myself in his shoes. I try very hard to understand what he is going through. When the post-ictal phase is over, he talks about it, but only a little. He equates it to a bad dream, because he will say, "did I really do that?" or "did this really happen, because I thought I was dreaming?".
The only conclusion I could come up with is that he is actually having clusters of seizures, and maybe we are only seeing 1, but he's having many. Because, how could 1 possibly affect his brain this much?
I did have another hunch though. When he was hospitalized last year before his diagnosis, he was first brought to the emergency room after a weekend of "zoning out". He was not loopy (though he was at his father's house, but when I talked to him on the phone, he didn't act loopy, and when I saw him in the emergency room, he acted fine, except for those brief moments of staring). He didn't get his epilepsy diagnosis until 2 days later. And, his neurologist said he was having seizures every few minutes (according to the EEG), and they were about 10 seconds in duration. He didn't start acting loopy until that first night they admitted him into the hospital (which was 2 days after the first witnessed seizure). So, could it be that his brain is trying to protect itself against damage? So that from now on, even though he only experiences 1 seizure, that it could just revert back to that loopy state?
I'm sorry if this post is so long. I have a lot on my mind, and I'm still trying to wrap my head around this. You'd think that since I've been dealing with this for over a year, that it would get easier, but it just gets more frustrating.