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status epilepticus in 5 year old - any info appreciated

Wed, 05/10/2006 - 07:05
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 comming down with a bug or a growth 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: status epilepticus in 5 year old - any info appreciated

Submitted by Anonymous on Wed, 2006-05-10 - 22:21
Sorry to hear of your daughter's difficulties. No easy answers but you've come to a good place to get feedback and support. It can be scarey for a parent.. especially when seizures happen at night. It's important that you find ways to take care of yourself though. There are monitors that can be put in her room so you can hear her if seizure occurs or alarm monitor on the bed that will go off if picks up movement of a seizure. Pillows can be obtained to lessen risk of suffocation as well. www.epilepsy.com/epilepsy/devices_links.html www.epilepsy.com/epilepsy/firstaid_seizures.html Make sure you take a look at the info for parents and families too. You'll pick up a bit more each time you look. Take care and wishing you the best, Epilepsy.com Resource Specialist

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

Submitted by Della on Wed, 2006-05-17 - 22:11
I have an 8yr old son that was diagnois with status epilepsy in Jan. 05. He is on 3 meds. I know how you feel. Devin sleeps with me and my husband too. You discribed what we are going though with Devin. If you would like to contact me my email is racingt11@yahoo.com. Our prays and thoughts are with you. Della

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

Submitted by rloves4 on Mon, 2006-07-03 - 02:59
rloves4 HI Regarding your question about vomiting. My 9 yr old donald always vomits before a grand mal. but not before a complex, it just looks like hes gonna get sick. I think that is his aura. Hang in there. Robin

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