hankandcarolyn
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I'm very sorry that my first post hear is a question, but I was hoping to get some help. My son has Hunter Syndrome and seizures are one of the many nasty side effect of the disorder. He has been having seizures for over a year. On an EEG they see "Pre-seizure activity coming from the left/front of the brain" but the seizures themself have always presented as staring/absence seizures. But now I think they are changing, and this is where I need help. Danny is not verbal enough to tell me when he is having/has had a seizure, so I need advice from someone who can tell me there experiences. What we are seeing now that I firmly believe are seizure go somewhat like this:
Sometimes it will start with what I think is his auras. He will rub his eyes and act somewhat tired, or sometimes grumpy. He usually gets a checked-out look on his face and he gets very quiet, which for him NEVER HAPPENS!! He stops all speech, all noises, all sounds. If he is up and moving around, he will stop playing and just kind of stare around. Sometimes he will look at you if you talk to him but that is all the response you can get. They usually happen in the mornings, and if he is sitting (working with his teacher or something) he will usually continue working on his task like nothing is wrong!! His teacher discribed it to me so I came in and observed to see it for myself. I saw one last for close to 2 minutes. You can tell as soon as he "checks back in" because he starts talking again. His teacher and I really believe these are seizures, but I would really like to know if any of you have seizures like this. Our neuro is supposed to call us back by Friday to decide if we want to try another 24hr video EEG and see if we can catch one. Thanks for any help you can be!!
Sometimes it will start with what I think is his auras. He will rub his eyes and act somewhat tired, or sometimes grumpy. He usually gets a checked-out look on his face and he gets very quiet, which for him NEVER HAPPENS!! He stops all speech, all noises, all sounds. If he is up and moving around, he will stop playing and just kind of stare around. Sometimes he will look at you if you talk to him but that is all the response you can get. They usually happen in the mornings, and if he is sitting (working with his teacher or something) he will usually continue working on his task like nothing is wrong!! His teacher discribed it to me so I came in and observed to see it for myself. I saw one last for close to 2 minutes. You can tell as soon as he "checks back in" because he starts talking again. His teacher and I really believe these are seizures, but I would really like to know if any of you have seizures like this. Our neuro is supposed to call us back by Friday to decide if we want to try another 24hr video EEG and see if we can catch one. Thanks for any help you can be!!