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Hello Everyone,
I am new to the forums and am just reading through different stories in an effort to find something that might 'click' and help us to figure out what challenges my son is experiencing. I am the extremely lucky mother of a fantastic 14yo boy. He's bright, funny, and has a great heart. He also has been experiencing some strange episodes over the past year.
It started in December 2012, while he was at the computer playing a video game. It was a bit later than usual, but not incredibly late. I was in my bedroom reading when I heard a crash in the dining room. I came in to find my son flat on his back, in a dining room chair. His eyes were wide open and he was 'frozen' in place. I panicked, screamed, yelled, shook him until he came out of it (about 1 minute) and helped him to his feet. He was a little upset about me causing such a fuss, but assured me he was okay. I checked his pulse, respirations, his pupil size and called my best friend (who is a doctor). All signs seemed to point to him being okay. My husband took him to the pediatrician the next day, and we were told he may have nodded off in the dining room and just 'knocked himself out'. We were told to bring him back if it happened again.
There were no episodes until September 2013. He had an episode again where he fell, this time out of bed about an hour after going to bed for the night. I heard a crash and walked into his room. He had opened his closet door at some point, only a few feet from his bed. He was laying on the floor between the closet on his back, eyes wide open again and again it took about a minute for him to come to. After this episode, we were able to see a neurologist. First EEG came back normal, so we did a 3-day ambulatory EEG. That came back normal as well. The neurologist could not find any signs of epilepsy, and felt it might be more of a sleep disorder. However, she couldn't rule it out since no one knows what causes the fall since it is at night and he's in his room alone. She said to 'live life' and call her if it happened again.
Since then, we have moved and we are in a newer/larger townhouse. So, here we are with episode 3. It happened last Thursday, and again I heard a crash. I went into his room and saw his empty bed. I looked again and could make him out on the floor of his room, again with the closet door open. He was on his back, eyes wide open, body rigid/muscles tight. In fact, he was holding something so tight in his hands that I had to pry it out. I was able to notice that he was breathing, at least, so that was reassuring (other times I was too panicked to notice). It took about a minute to get him to come out of it. Afterwards, he just wanted to get a drink and go back to sleep. I called the neuro, and she said "wellll, if it happens AGAIN, give me a call. Just monitor him".
At this point, I am panicked. I can't sleep, since my room is on the opposite side of the house. I have been sleeping on the couch so I can hear any sounds. I jump at every sound and I don't know what to do next. I don't know how to help him and it terrifies me and breaks my heart. I am fearful that he will fall and really injure himself, or that he will fall down the flight of stairs that we have here at the house (technically, our unit is the 2nd and 3rd unit of the building and we have a set of stairs immediately when you enter).
I just feel so helpless, so I am trying to see if there may be someone who has experienced something similar or might know what more I can do.:crying:
Has anyone else experienced something like this?
I am new to the forums and am just reading through different stories in an effort to find something that might 'click' and help us to figure out what challenges my son is experiencing. I am the extremely lucky mother of a fantastic 14yo boy. He's bright, funny, and has a great heart. He also has been experiencing some strange episodes over the past year.
It started in December 2012, while he was at the computer playing a video game. It was a bit later than usual, but not incredibly late. I was in my bedroom reading when I heard a crash in the dining room. I came in to find my son flat on his back, in a dining room chair. His eyes were wide open and he was 'frozen' in place. I panicked, screamed, yelled, shook him until he came out of it (about 1 minute) and helped him to his feet. He was a little upset about me causing such a fuss, but assured me he was okay. I checked his pulse, respirations, his pupil size and called my best friend (who is a doctor). All signs seemed to point to him being okay. My husband took him to the pediatrician the next day, and we were told he may have nodded off in the dining room and just 'knocked himself out'. We were told to bring him back if it happened again.
There were no episodes until September 2013. He had an episode again where he fell, this time out of bed about an hour after going to bed for the night. I heard a crash and walked into his room. He had opened his closet door at some point, only a few feet from his bed. He was laying on the floor between the closet on his back, eyes wide open again and again it took about a minute for him to come to. After this episode, we were able to see a neurologist. First EEG came back normal, so we did a 3-day ambulatory EEG. That came back normal as well. The neurologist could not find any signs of epilepsy, and felt it might be more of a sleep disorder. However, she couldn't rule it out since no one knows what causes the fall since it is at night and he's in his room alone. She said to 'live life' and call her if it happened again.
Since then, we have moved and we are in a newer/larger townhouse. So, here we are with episode 3. It happened last Thursday, and again I heard a crash. I went into his room and saw his empty bed. I looked again and could make him out on the floor of his room, again with the closet door open. He was on his back, eyes wide open, body rigid/muscles tight. In fact, he was holding something so tight in his hands that I had to pry it out. I was able to notice that he was breathing, at least, so that was reassuring (other times I was too panicked to notice). It took about a minute to get him to come out of it. Afterwards, he just wanted to get a drink and go back to sleep. I called the neuro, and she said "wellll, if it happens AGAIN, give me a call. Just monitor him".
At this point, I am panicked. I can't sleep, since my room is on the opposite side of the house. I have been sleeping on the couch so I can hear any sounds. I jump at every sound and I don't know what to do next. I don't know how to help him and it terrifies me and breaks my heart. I am fearful that he will fall and really injure himself, or that he will fall down the flight of stairs that we have here at the house (technically, our unit is the 2nd and 3rd unit of the building and we have a set of stairs immediately when you enter).
I just feel so helpless, so I am trying to see if there may be someone who has experienced something similar or might know what more I can do.:crying:
Has anyone else experienced something like this?