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

Tue, 05/09/2006 - 22:55
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!!

Comments

Re: Re: Re: status epilepticus in 5 year old - any info apprecia

Submitted by Mel on Sun, 2006-05-28 - 03:30
Hi, Thank You for your note. My daughter is not doing so well. Her seizures are diffretnt now. You are right they were only at night. Now they are starting to happen during the day. (now without vomitting) She has been diagnosed with Pan. Syndrome. Initailly we were in the ICU while they were trying to figure out what was going on with her. We went to a neurologist and he said she may never seize again. We went home and tried to relax. Boom another seizure more medication, Boom another seizure more medication, eventually maxing out her medication and trying others.... We are now on our 4th AED medication and our 30th seizure 5 required Diastat. The Dr. are wanting the medication to try to hold her seizures to 0. Was you experience similar? Did your daughter stop seizing and get off the medication? I have been reading "Seizures Epilepsey and Childhood" The statistics look weak for her being seizure free, the more she fails medication and continue seizing. I would love to hear a bright side.

Re: Re: Re: Re: status epilepticus in 5 year old - any info appr

Submitted by ekoorb on Sun, 2006-05-28 - 12:17
This started for us in October. She did not go on medecine until March of this year. She is still on a 15 mg dose of Topomax. She finally seems to have adjusted to the meds. I don't know about the stats for being seizure free but I do have a copy of Dr. Panayiotopolous' report and while 2/3 of the seizures in the study in this syndrome occur at night, there is also the other third that may occur during the day. I am a lay person but don't lose hope because my understanding is the diagnosis of Pan. Syndrome, even though the seizures are showing their face in the day, is still a good prognosis. The report is published by John Libby & Company. Go to johnlibbey@aol.com. Maybe you can get a copy and you will see that others with this syndrome experienced daytime stuff but still had a good prognosis. Here is a paragraph in the report about the prognosis: "Pan. Syndrom is a remarkably benign condition despite high incidence of partial mainly autonomic status epilepticus. One third have a single seizure, another half have 2 to 5 seizures and only 5 % have more than 10 seizures and these some times may be frequent but outcome is again favorable. Furthermore, seizure life span is very brief with remission occuring within 1 to 2 yearss from onset. The risk of developing epilepsy in adult life is probably no more than the general population. However, 1/5 may develop other type of infrequent, usually rolandic (13%) seizures during childhood and early teens. There are also age related and remit before the age of 16 years.... " I hope this helps. Please keep in touch.

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

Submitted by Mel on Tue, 2006-05-30 - 16:11
Hi Ekoorb, I was curious did your daughter try any other AED medicaitons? Has she had any side effects with Topamax? Do you like Topamax? Is that the first drug they tried? Has she had other seizures? Or just the status seizure that started in October. Does she have to carry Diastat in case of emergency? Kindergarten was so hard for me, sending her not knowing if she would seize. the possibility they may have to give her Diastat almost kept her home for the year.We made it through the year. Now on to first grade all day.Yeiks! Has your daughter gone to school yet? Have you ever had to use the Diastsat? Do you daughters seizures occur mostly at night? Our daughters use to only be at night, she has had 3 big ones during the day and a couple small ones. Does your daughter always vomit on onset? Sorry, I have so many questions. I as I have said it has been a year since we have been dealing with her seizures. She started on Dilantin then she went to Trileptal-she slept all the time and had break through seizures anyways. When she finally seized on her maxium doseage of Trileptal we tried Lamictal. We liked Lamictal better she was more like her old self. She started having break through seizures again.Now she is above the doseage reccommended for her height and weight. Her blood levels indicate she can tolerate a bit more of the Lamictal. She is having a hard time with balence and thinking clearly, she is still having seizures. We also tried a clinical trial of Keppra, she was an emotional wreck.She failed Keppra. Have you had any of these experiences? Has anyone else out grown Pana**** Syndrome with this kind of medicaiton and seizure experience?

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