adddxat48
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:soap: Thought I'd say hello. My daughter is 16, has had complex partial seizures for years. We don't know exactly when they started because we didn't know they were happening! (She now thinks it when she was 8, now that she can put words to odd experiences she was having.) She had a couple of psychiatric diagnoses and a learning disability and some medical issues. And she was addicted--I mean truly addicted--to video games. She was in terrible shape. But nobody saw her experience a seizure until we'd already figured out, with the help of one dr., that she was having these events during video games, TV, and then, after she gave up video games, while reading.
Without video games she began to function so much better in every respect: mood, focus, executive function, the medical stuff. I think this could also be true for a lot of kids who don't know they're experiencing subtle events, and their parents don't know it, either, because there's usually nothing you can see. Watching TV is still a problem as is reading, but we're using special glasses and taking breaks.
EEGs were a frustrating waste of time because the abnormalities didn't have classic epileptiform patterns. Without the exact spike-wave thing, neurologists were extremely skeptical. They hastily attributed the abnormalities to her psychiatric diagnoses, her meds, alleged drowsiness, etc. We provided a ton of clinical evidence but they were more influenced by the EEG. Hey, aren't you supposed to treat the patient, not the EEG? What is it with these guys?! We finally found a compassionate and open-minded neurologist who looked more closely at the EEG abnormalities and saw they couldn't be explained away so quickly. He ordered at PET scan, which showed dysfunction in both temporal lobes. So he's great, and he's treating my daughter, but it is still difficult for him to utter the word seizure or put it in writing, which would be very helpful for her school, because drs are so reluctant to make this diagnosis without total proof. Surface electrodes just don't do a good enough job in all cases. It seems like pretty crude technology, actually. Also, the neurologists were not knowledgeable about video games causing anything other than generalized seizures.
She's got Z1 glasses that were helpful at first but then less so. We're ending a trial of Depakote--it put her in a fog and gave her terrible stomach aches. We like Lamictal and are going to fool around with that again and see if that plus the glasses will work. She's made huge progress overall but it's been such a battle--overcoming the game addiction, getting neurologists to take us seriously, getting her school to understand that she needed to be away from computer screens at school and that her many absences due to extreme fatigue had nothing to do with her motivation to attend.
She is socially very isolated and can you imagine a 16 year old who is not allowed to use a computer? The restrictions on her activity are a big drag. The good news is that one of the psychiatric diagnoses no longer seems to fit. She was in a constant post-ictal state for years, having multiple events per day in front of video games. She's not supremely irritable and demanding anymore. She is very dependent, though.
Well, I guess that's enough for an intro! Nice to be in the company of people who understand what an effect this has on absolutely everything in the family's life.
Without video games she began to function so much better in every respect: mood, focus, executive function, the medical stuff. I think this could also be true for a lot of kids who don't know they're experiencing subtle events, and their parents don't know it, either, because there's usually nothing you can see. Watching TV is still a problem as is reading, but we're using special glasses and taking breaks.
EEGs were a frustrating waste of time because the abnormalities didn't have classic epileptiform patterns. Without the exact spike-wave thing, neurologists were extremely skeptical. They hastily attributed the abnormalities to her psychiatric diagnoses, her meds, alleged drowsiness, etc. We provided a ton of clinical evidence but they were more influenced by the EEG. Hey, aren't you supposed to treat the patient, not the EEG? What is it with these guys?! We finally found a compassionate and open-minded neurologist who looked more closely at the EEG abnormalities and saw they couldn't be explained away so quickly. He ordered at PET scan, which showed dysfunction in both temporal lobes. So he's great, and he's treating my daughter, but it is still difficult for him to utter the word seizure or put it in writing, which would be very helpful for her school, because drs are so reluctant to make this diagnosis without total proof. Surface electrodes just don't do a good enough job in all cases. It seems like pretty crude technology, actually. Also, the neurologists were not knowledgeable about video games causing anything other than generalized seizures.
She's got Z1 glasses that were helpful at first but then less so. We're ending a trial of Depakote--it put her in a fog and gave her terrible stomach aches. We like Lamictal and are going to fool around with that again and see if that plus the glasses will work. She's made huge progress overall but it's been such a battle--overcoming the game addiction, getting neurologists to take us seriously, getting her school to understand that she needed to be away from computer screens at school and that her many absences due to extreme fatigue had nothing to do with her motivation to attend.
She is socially very isolated and can you imagine a 16 year old who is not allowed to use a computer? The restrictions on her activity are a big drag. The good news is that one of the psychiatric diagnoses no longer seems to fit. She was in a constant post-ictal state for years, having multiple events per day in front of video games. She's not supremely irritable and demanding anymore. She is very dependent, though.
Well, I guess that's enough for an intro! Nice to be in the company of people who understand what an effect this has on absolutely everything in the family's life.