status epilepticus in 5 year old - any info appreciated!!

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Hello eveyone. My five year old daughter was just discharged from the hopital after a two day stay. She had her second seizure (that we have witnessed) the other night. Like her first seizure, she had just fallen asleep on the living room couch. (the fist seizure was also a grand mal, but only lasted 2-3 minutes) This seizure was also a grand mal and lasted 16 minutes. I called an ambulance about 3.5 minutes into the seizure. She was still seizing when they began tranporting her to the hospital 13-15 minutes later. While in the ambulance she vomited toward the end of the seizure. She was admitted and had a CT of the brain, an MRI and an EEG. The CT and MRI showed a small cyst and a calcium deposit in her brain but the neurologist did not seem concerned about either and said they were not in an area of the brain that would cause a seizure. The EEG however was abnormal as it showed irregular activity in all three phases (sleep, accelerated heart rate and use of strobe light) The irregularity was much stronger during the sleep phase. They started her on Trileptal 300mg 2x daily. We have her first follow up neurology appointment on thursday. These are my questions and concerns: I obviously haven't slept much since she's been home as I'm afraid I may sleep through another seizure. The last one was so very long and it scares me to think what could have happened if she were in her bed upstairs (where she sleeps 99% of the time) and had vomited during the seizure.Is vomiting common during a seizure or was it just because hers went on for such a long period of time? She is now sleeping in the room with myself and my husband until we see how she does over the next few weeks. However I still worry about waking up if she has another one as it was not overly noisey. The seizure itself involved her whole body ( head and eyes fixated to the left, left arm extended with hand curled inward, right curled against chest and both legs straight and jerking. However she did seem to hear us when we were talking to her. When we asked " Can you hear me , Mikaela?" or "Mikaela, are you okay?" she attempted to answer us although it was difficult to understand her. Is that normal to any ones knowledge? As I've been researching seizures and epilepsy, her situation does not seem to fit the norm (if there is such a thing). Looking back on it now I suppose its safe to assume that she's probably had other seizure while sleeping as there have been many days over the past year or two that we have been baffled as to why our early riser slept for 12 or 13 hours on occasion. We always chalked it up to he comming down with a bug or a grwth spurt or something. We would check on her - no fever or anything, she woke breifly but always wanted to go back to sleep. Now I figure it was most likely a seizure that had caused the sleepiness. Any information or suggestions would be greatly appreciated!!

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Re: Re: Re: Re: Re: Re: status epilepticus in 5 year old - any i

Submitted by ekoorb on Tue, 2006-05-30 - 16:43

Mel- Topomax is the first and only medecine she has tried. As to side effects, she was cranky and felt sad in the beginning and was a little impulsive but seems to have adjusted to it now. She started it in March. To date, we have not had to carry the Diastat for emergencies but we do have it in our house and would never travel out of town without it. In the last two months (fingers crossed) nothing has happened at night. Did you go through a period where nothing happened with the meds? As to the timing of the seizures, the scary ones have been at night. I am not positive if she has seized in the day. The reason I say this is in Dr. Pan.'s book, they mention that a daytime seizure usually begins with the child being completely alert and then the child will look at a someone and say I feel like I am going to throw up. Then the child either throws up or doesn't and if the child throws up, it may progress into more or it may not. She has told me she felt like she would vomit before and one time she actually did but she was hysterically crying before that because she had bumped her head. I really don't know. She is entering kindergarten in the fall and going to camp this summer. The epilepsy specialist was going to talk about thinking about stopping meds but I said there is no way I would do that now, especially before the summer begins. He actually ended up agreeing with me. I guess not everyone with Pan. Syndrome is medicated. He decided to keep her on the Topomax several months ago because she had had a handful of stuff at night, some events smaller than others, and he felt it was frequent enough that she had to medicated. As to knowing whether others have outgrown the syndrome with that kind of medication and seizure experience, I will review the report for you tonight. I do know that there were lots of daytime seizures for the people studied and they also had Pan. Syndrome and as the language I quoted for you indicated, it was still a good prognosis. I can't rememeber are you seeing a neurologist or an epi. specialist. I am seeing our specialist next week. I am going to ask him some of the questions we are discussing. I know this is overwhelming and scary but it sounds like you are doing everything you can for your daugther. Please write back.

Re: status epilepticus in 5 year old - any info appreciated!!

Submitted by sg004a885 on Fri, 2006-06-02 - 12:08

my three year old had similar, i also had dificuly sleeping in case i missed something important (still do) but it will get a bit easier with time. my daughter can sleep for hours on end after her seizures but i have been told this is a normal recovery process, my daughter had a seizure that lasted 10 min long and was still in it when the paramedics came, she has been having seizurs since she was 7 months old but has only just been diagnosed with epilepsy. I know how hard it can be just hang in there you are doing well