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Keppra or nighttime seizures?

Mon, 10/06/2014 - 12:36

~~My 17 year old daughter is unable to wake for school. This started in January 2014. Extreme fatigue, unresponsive when trying to wake her, sleeps from about 10pm until 10-11am or later. Currently on Keppra 1250mg twice daily, B6 50mg twice daily, Folic Acid 1mg twice daily, melatonin 1.5mg at night. Wakes with stomach pain, sore stomach muscles, nausea, occasional headache. Seen at Children's of Pittsburgh, multiple EEGs, video, ambulatory, routine - all show tendencies. No tonic clonic seizures since February 2012. She has been on Keppra since February 2012. Started at 750mg twice daily, but by spring of 2013 she had migraines and stomach pain in the afternoons after school that seemed to lead to the need to sleep for a very long time. It was suspencted that it was seizure activity. EEG confirmed the presence of seizure tendencies even after a Keppra increase to 1000mg twice daily, those episodes subsided. January 2014, it became impossible to wake her for school on several occasions. By spring of 2014 she was on homebound instruction from school because of her consistant inability to wake up for school and chronic fatigue. Now, fall of 2014, problem still exists. Given the stomach pain and sore stomach muscles it was suspected that she was again having seizures, but during the night. Her video EEG in the hospital in April 2014 showed a continued tendency for seizures, but they were unable to provoke one. Determined Keppra is doing its job to prevent manifestation of tonic clonic seizures, but no explanation for the continued, and worsening, inability to wake in the mornings. Had a 3 day ambulatory EEG last month, still waiting for results. Has ANYONE had this experience?? Is it possible that it is nighttime seizures? Or is it possible that she has too much Keppra? Needs a decrease? Med change? More B6? She has already missed about 60% of her junior year. She's an honor student with so much to look forward to - if only she could wake up. I've gone as far as actually sitting her up in bed to try to get her conscious again and she just lets out a tiny whimper, never opens her eyes, and falls back to the bed.

Comments

They haven't been able to

Submitted by Lainysmom on Wed, 2014-10-08 - 09:10
They haven't been able to find any answers so far at Children's hospital. She's missing out on her junior year, she's an honor student who is now suffering because she is trapped inside her own body. She says she can hear us, but just can't manage any response more than a barely audible whimper. It's heartbreaking!

We have been working with her

Submitted by Anonymous on Mon, 2014-10-13 - 08:54
We have been working with her epileptologist on this for almost a year. She had an overnight video EEG that didn't give us any answers except that there are still seizure tendencies. The keppra has done very well for her otherwise - no break-through seizures. Not one since starting it in 2012. She had minimal behavioral side effects shortly after starting it, but they were thwarted by B6. I'm scared to death to try her on something else, but thinking the increases she's had may just be too much.

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