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status epilepticus in 5 year old - any info appreciated!!
Tue, 05/09/2006 - 22:55Topic: Parents & Caregivers
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: status epilepticus in 5 year old - any info appreciated!
Submitted by mamaoffive on Wed, 2006-05-10 - 17:10
Thank You for the response! The video monitor is a great idea - wasn't even aware that they could plug into the television! We only had the one eeg while in the hospital which the neurologist said had ongoing abnormal electrical activity that intesified during the sleep phase of the test. He did not mention a specific location, type of seizure or syndrome. We go to the neurologist tommarow, so I will ask then. Will they be able to tell any of that by the EEG? It was not a 24 hour EEG. The emergency tech's who took her in the amulance just said she was having a grand mal seizure - nothing more specific than that. She was still seizing in the ambulance - so they were able to witness the actual seizure.
Re: status epilepticus in 5 year old - any info appreciated!!
Submitted by ekoorb on Wed, 2006-05-10 - 18:32
I am so sorry to read about your frightening night with your daughter. It made me sad because it brought up so many emotions to our recent experience in March. My five year old daughter also was recently diagnosed with seizure disorder. She also has had them during sleep. When you get a chance, look up Panayiotopoulos syndrome (or Benign Occipital Childhood Epilepsy). This may not relate to your daughter and while I am clearly a lay person in this area, this type mostly occurs at night, it involves vomitting,eye deviate to one side, it lasts longer than normal seizures and the child usually afterwards sleeps for hours, wakes up normal. Also, the most common onset is between 4 and 5 years old and is more common in girls. This may not be your child but any information may help.
The main seizure I noticed for my daughter was she sat up and started coughing and I thought she was going to vomit. When I tried to talk to her she was nonresponsive but her eyes were open. This lasted at least 7 minutes. We completely freaked out and called an ambulance. She was fine at the hospital, came home, slept several hours and has no recollection of the incident.
Our daughter's seizures were different but certain aspects that you described could be similar.
Also, make sure you ask about the emergency med/suppository that parent can keep around if the seizure goes longer than 5 minutes.
Also, if this type sounds similar to you, the good news it is benign and the prognosis is really good because all the kids diagnosed with this syndrome out grow it.
Re: status epilepticus in 5 year old - any info appreciated!!
Submitted by ac420ec on Wed, 2006-05-10 - 07:24
That sounds very similar to my childs first seizure (that we were aware of) with the forced head turning and leg jerking,and somewhat preserved responsiveness. She was 5 at the time. After that she began to have less severe complex partial seizures at night that involved fear, automatisms, wandering, etc. I think the first one we saw generalized. She was misdiagnosed with a sleep disorder and they put the first seizure down as a febrile (although her temp was only 101,she had an ear infection) Nearly 2 1/2 years and 3 eegs and 1 sleep study later the epi we took her too for a second opinion diagnosed her with frontal lobe seizures (which are hard to pick up on eeg). She has minor motor seizures about every 15 minutes all night. Only the longer ones registered on the eeg. She is now on trileptal 450 mg 2x a day. We have seen an improvement but not a complete cessation of the seizures yet. We got a video monitor for her room. It was under $50 (on amazon) Its wireless and the receiver plugs right into the tv in our room. With the picture in picture function we can watch movies, etc. while still having her in the corner of the screen and notice any major movement. If you decide to get one make sure it has a low light function, ours is Lorex brand and gives a clear picture even with virtually no light in her room. Its very scary to have your child go through this, I hope the meds work for her. Have they told you what type of seizures she has, a location, or syndrome? Good Luck!