Child with seizures having "sleep walking" like episodes

Jesse - posted on 11/26/2011 ( 5 moms have responded )

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My daughter had her first Grand Mal seizure about 2 years ago. A year and a half passed by before her 2nd occurred and she is now taking Keppra to treat the seizures. All the testing that she's been thru show normal results and don't show the cause at all.

Even before she had the first seizure, she's had these strange "sleep walking" like episodes. They are hard to explain, but she seems to be awake, however, very confused and some times talking about things that are not there at the time or that are not happening. Two nights ago, she woke up hysterically crying and could not be consoled. I couldn't understand a word she was saying and she didn't seem to be completely alert, although she knew where we were. I'm not sure if maybe she awoke after a seizure, but I never heard any noise at all on the monitor we use to listen out for her. When I tell the doctors about these episodes, they don't really seem to be too concerned since the sleep studies have come up normal. I'm convinced they have to be related some how to the seizures, or may be a different type of seizure.

Trying to see if anyone else has had similar situations like this. And also if anyone has any recommendations on books that describe different types of seizures and symptoms or any other useful resource information.

Also would like to know if someone who has experienced a seizure can describe to me what its like and how they felt when they woke up. I don't mean to pry and be personal, but its hard for my daughter to explain since she's not sure how she feels and I believe knowing what its like would be extremely helpful.

Thank you so much for your time.

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Lori - posted on 01/24/2014

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Hi Jesse, I was doing some research and came across your questions on seizures. I know that it has been posted for quite some time but if your daughter has been having seizures than the problem probably has not been resolved , since most people with seizures have them for life once they start. I am a female who has suffered from epilepsy since very young childhood. I am now 47. I am willing to share my experiences with you about how it feels being a epileptic, and I will do it with the experience of an RN as I am one as well. This will be my outside look. When I was a child and young adult I used to act like I was sleepwalking. Get up, walk around the house open and close doors walk out of the house, one time walked to my car parked down the street in the middle of the night, and so on. Looking back sometimes I'd wake up and noted I voided on myself and couldn't understand why. My mom if she'd catch me roaming around the house would calmly lead me back to bed and I'd return to sleep. She said my eyes were open but really no one was home. I don't fault her for not knowing I was really seizing they appear identical almost to sleepwalking. When I was 17 I started having what dr.s said was complex migraines with auras, every month lasting two days and usually around my menses time or when extreme stressful situations were going on in my life. They tried everything injections, pain killers blood pressure pills and more and nothing helped. When I finished college and started my first job I felt like it was a migraine day, at work I was witnessed by dr.s and co-nurses as being had a tonic-clonic seizure with complete psychosis and confusion after. They rushed me to our ER and w*w*a*l*l*a, someone finally figured it out right this time, I had seizure disorder! Yea, so now what? Turned out all those years of sleepwalking was either postictal confusion or actual partial complex seizures happening and I was also having nightmares and increased heart rate and all it was seizures. Those headaches and super weird senses things going on was seizures. They put me on meds and again relief, not just from migraines but the night mares and seizures. My seizures can be a combination of patrial complex and grand mal and back and forth. I have been hospitalized for having uncontrolled seizures lasting up to 6hour without relief. This is called status epilepticus and will kill if not properly treated in ER. As a epileptic I know one can live a long and prosperous life if the disorder is continuously treated and managed forever. That means talking meds, the med Keppra is the best on the market, been taking it for 9years now. Surgery is also an option, there are several used today to help. Back to meds, it is important that one not miss doses, because that itself can cause seizures. Making dietary changes too like trying a ketogenitc diet helps. also noting if you feel like your meds don't work anymore, I've changed meds in the last 14 years about 9 times, and tell your girl to share with you how she feels and also inform close friends who will be hanging around her. Get and medical bracelet keep the info updated! I every state in the US there is a rule about driving and seizures. If and when she gets a license she will need to be extra cautious. Dr.'s by law report any know uncontrolled seizures in their patents to the DMV, its the law for safety. If she looses her license for having seizures she will need to be followed closely by an MD who will report the changes in meds and will report to the DMV when the dr. knows that the seizures are under control again. Most states law is can't drive for 6-12months. I've had mine medically suspended three times in the last 14years. There are so many things I'd love to share with you on the subject and am willing to do so, to help keep you up to date on much info regarding seizures, including familial and genetic links within families. you can email me at Ldeybarger@yahoo.com good luck, L.

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Annette - posted on 07/20/2012

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I am posting 3rd party per say. My daughter and my cousins daughter both have the same form of epilepsy but at the time mine is not experiening the night time struggles. However, you could have been writing my cousin's daughters story. If fact they knew something was off before her first major seizure as she had some strange "sleep walking" episodes. She now can wake up and come out of her room completly disoriented and completing tasks. She can answer questions and all but will have NO recollection of it in the morning. As for her seizures the all happen while she is asleep, very violent to the point of biting a hole in her cheeks at times, weird noise like choking and the last one as it ended trying to hit her mother even though she had never done that before. For her she does not tell of any pain but a lot of times as to stay home from school the next day because she is just too exhausted and ends up sleeping a lot. She does have headaches the next day just depending of the severity of the seizure the night before

User - posted on 07/20/2012

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Its like you are telling my story.... tha is happening to my Daughter she wakes up at night sometimes talking or just staring and pinting at the wall... and sometimes she just starts crying hysterically and doesnt respond and the just falls asleep. But since she is 3 years old she cant really describe what is happening to her. I have asked the doctor and he allways tells me tha one has nothing to do with the other but I always knew in my heart that it had to be connected. She is currantly taking Trileptal two times a day since her seizures are partial. Thank you for posting this because now I know tha there is a connection because more than one child with the exact problem is no ...coin cidence... I hope everything gets better

Jesse - posted on 12/05/2011

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Hi Linda,
Thank you so much for taking the time to reply. I just knew some how the two issues were related. She did complain of a bad headache after this last episode. She hates taking any kind of meds and she was begging for a tylenol. I made her wait until I knew she was awake and fully alert before allowing her to have one. I felt so bad because I could tell she was in pain. I think you've provided more info on this subject then any of the doctors have so far, and I will continue to research this subject further. The Keppra did cause her to have really bad mood swings in the beginning, thankfully after about a month or so that started to subside. Other people I've chatted with regarding the Keppra suggested adding a vitamin b regiment along with the Keppra, supposedly this lessons the side effects, though I haven't tried that. All of my daughters episodes have been at night. Usually within an hour or two of going to sleep. On a few occassions we have noticed episodes that we believe are absence seizures because she'll just stop and stare off into space for a few seconds. Though, the doctors can't say for sure because they don't see anything. Wishing you and your son the best and I hope things get easier for you. My daughter has only had 2 grand mal seizures, I can't imagine what it must be like to have witnessed over 500.

Linda - posted on 12/01/2011

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Hi Jesse,
Hurts me to know your questions are not getting answered.
I have just joined tonight! Perhaps I can help.
I have held my son through over 500 fully convulsing-unconcious seizures. Yes what you are seeing is a type of seizure. I have witnessed this with my son. They can be walking and very disoriented. I have to watch my son nearly by the second. No meds have controlled his since we began 7 years ago. I took him for a sleep study and it was fairly normal. Hmmm? Really? What's up with that when this child is having them primarily at night? I did find by doing a pulse ox test he needed oxygen at night. So he's been on a concentrator since- second year now. I see how it has helped except when during a seizure he got tangled up in the line. He use to get a feeling in his stomach when they began 7 yrs. ago. Try finding out if she felt funny in her tummy. She will know. I've spent all these years doing research since docs could not show why he developed these. Done tons of therapies. Kepra was something I did not go for because of the behavioral side effects. I know it has worked for other kids but we experienced a nightmare med and I am not doing that again unless last resort. I have linked certain foods to my son seizing. Certain computer, tv time there is so many multiple factors. Our newest med is an oldie, primadone- at night, since Labor Day. He sleeps so much better on it than any. Melatonin never worked for him. Actually had the opposite effect-he would just lay there in haze like fashion for hours. He is still on Lamictal day and night, that hasn't controlled them but at times it helps and other times it doesn't. Afterwards he usually needs to crash and has expressed to me his head hurts. Times it is beet red even.
I find for him it is similar to migraine pain., but not every time. We've been through alot of meds and I have learned alot through each one that doctors do not recognize. The behavioral effects are very problematic for these children, their families and school. I send you the best! w/love

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