Hi! I am new to this board.
I have a 17 year old son who had a brain injury at 15 months old. He had grand mal seizures for the first week following his accident which caused considerable brain damage. He was medicated and seizure free for years.
At age 5 we made the choice (with our doctor's knowledge) to take him off of the medication. They told us then, that if he ever had more seizures it would probably be during puberty. They were right! At age 13 he started having "episodes" where he would say his right leg and arm were "going to sleep". They lasted 1 - 3 minutes. He was having these episodes every 3-4 days. We went to the neurologist who confirmed they were seizures and recommended medication again.
Since we did NOT like the side affects from years ago, and since I had just started on a new dietary supplement, we decided to try that instead. It has reduced his seizures to 1 minute or less, and he has less of them.
But the strange thing about his seizures are he now has them on a monthly cycle. There are usually 28 - 32 days between last seizure in a series and the first in the next series. The series almost always consist of 3-4 seizures during a week's time. While I know that girls have cycles, I did not know that boys do.
We are hoping since these are hormone related, that he will outgrow them when he finishes puberty. If not, we will re-visit the medication issue.
Because of his brain injury, he is not able to explain well what he is feeling. I was hoping someone else had similar seizures who could explain them to me.
The things we have determined:
1. They almost always start with the feeling that his arm and leg are going to sleep and quickly move into involving his entire body. He then is "paralysed" for 30 to 60 seconds. Since he has a few seconds "warning" he is able to sit down on the floor if standing. If sitting on a straight chair he will fall off because of being unable to hold himself up. On a couch, he just falls to the side.
2. He can hear and see through the entire seizure. I tested him once by saying a silly sentence in the middle of it. He could repeat it to me following.
3. The first thing he can do when coming out of it is smile, then a few seconds later he can talk.
Occasionally following his seizure, he will have a 5 - 15 minute time where he cannot see. His sight will then come back gradually. If he has this, it is always after the 1st seizure of the cycle.
I am sorry this got so long, but I felt I needed to explain everything. I would appreciate any response from someone who has experienced any of these issues.