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Keppra or nocturnal seizures keeping DD asleep?

Mon, 10/06/2014 - 11:34

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

What you could have is a

Submitted by just_joe on Mon, 2014-10-06 - 21:47
What you could have is a combination of different meds all causing th=different things to happen.The dosage of keppraa little above mid range. I can say that because I have been taking the MAX dosage of keppra for many years now. I take 3 -750mg 2 times a day which equates to 4500mgAs Mereloades posted melatonin and B^ both afect the sleep. Dose her neurologist know all the medications she takes because that is important. I have an issue that my PCP can prescribe a RX for but he wont because it will interfer with some of my other medications. Oh and with a=fib my neurologist does need to know that since some AED's can affect the heart beat a little.  Now as for seizures at night I can say nothing sine I haven't had any. However if she does have them then that could be a reason for her being tired. Understand that if she has a convulsion all her muscles are jerking with all their strength until the seizure stops.At teh age of 13 and being an 85lb weakling My step father made a mistake rather then moving the coffee table he tried to hold my arm down.With my right hand I tossed him over my body and against the wall. I wasn't able to lift that much weight for another 2 years Ater a convulsive seizure I am generally very tired and if given the opportunity I would be out like a light. If I had one at school I went to the nurses office and rested until the next period would start. I also told them not to let me sleep since they wouldn't be able to wake me if I went to sleep. So yes if she is having seizures at night without anyone knowing it them she will be tired and at school if gives a few minutes she might go to sleep. I had to work at it ti stay awake after seizures at school. I do hopwe this helps and she gets the assistance she needs and gets seizure free Joe

She's only 111lbs and about 5

Submitted by Lainysmom on Wed, 2014-10-08 - 11:00
She's only 111lbs and about 5'6". I left a message for her nurse who called me back within half an hour and she is going to find out who is to be reading the results and push them to do so ASAP. She is also ordering blood work since her levels haven't been checked since March of 2013! The nurse is afraid the doctors are going to try to chalk it up to a teenager not wanting to go to school if they don't see anything on her EEG because this happened last year as well. That is so far from what is happening. She is in an absolute panic because she's so far behind, but even that can't get her out of bed before 10am. The nurse agrees, that she is either having seizures, is over medicated, or that the side effects of the keppra are just getting worse instead of better (which would make sense since they have increased her dose twice to try to combat this problem).

Mereloaded does have a lot of

Submitted by just_joe on Wed, 2014-10-08 - 13:17
Mereloaded does have a lot of things that could be the problem with your daughter. As for seizures and the drain on a persons energy I can attest to that since I had focal seizures that generalized (becomming convulsive which looked like a grand mal seizure) Any seizure drains energy but if one goes generic then it is also a drain on the muscles which equates to a heavier drain. While I don't think I have had a seizure while sleeping I do know that after a convulsive seizure I do not want to lay down because if I did I would be out like a light for a very long time. If I had one at school which is where most of my convulsive seizure happened I told the nurse not to let me go to sleep. I did need rest which I got but if I went to sleep after a seizure at 9am I would e there in the bed in the nurses office until I was awakened so I could get on the bus missing a full day of classes. I hope this helps and she gets her meds set right Joe

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