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COMPLEX PARTIAL SEIZURES AND THEIR CAUSES...

Wed, 07/25/2007 - 03:47
My child has had two Complex Partial seizures within almost 3 months of one another. Prior to this she has been an extremely healthy child with one ear ache and 2 episodes of pink eye. She threw up for the first time in her life 1 week before her first one but they said that was unrelated... Both episodes have been almost identical. Up late playing with friends and by late I mean we got to bed 30 minutes after normal bed time. Then up early - 1 hour ahead of normal wake up. Seems normal for first 15 minutes that we're awake and than bam it hits. The first one we had no idea and ended up in the hospital with her being intebated for 1 hour and then extebated and then after being in the ER from 9 - 5 she was up and we stayed overnight for observation. We live near a wonderful children's facility and are now seeking a second opinion to exhaust all avenues while we continue on with prescribed treatment. 5ml of Trileptal 2 times daily and Diastat as rescue med used along with calling 911 to go to Children's facility if at home or closest hospital if not... All CT's, Bloodwork, Urine, EEG's, and MRI have been normal. Triggers from both: 1) Up 30 minutes beyond normal bed time 2) High stimulis prior to sleep - playing with friends and playing hand held video games 3) Up 1 hour prior to normal wake up 4) Cough and Complain of throat irritation at base of throat between collar bones 5) Seizure begins - first part repetative swallowing, eyes straight through you and then begin side to side movement, then repetative tics begin - patting, swallowing, trying to verbalize but is nonsense, then right side goes rigid, eyes lock up and to left (1st seizure arrested at hospital - 2nd arrested 4 minutes in with Diastat (thank God for Diastat) and treated further at hospital but no where near as bad as first but we are told if we wouldn't have arrested it with Diastat it would've been worse. We've been told that with normal EEG's if there were a cause due to stimulus, video games, strobe lights of any kind, or sleep disorder it would've shown up on both or one. The throat thing is being explained as coincidence - we're sort of not convinced on that issue. We are scared to death about this but are trying our best to find our 2nd "new normal". Neurologist here seems to think will outgrow at some point. But with normal test results there is nothing they can tell us as a cause. Reading about the causes online has freaked us out and we are trying to remember to look at all avenues with a low key prespective... If anyone has any ideas we'd love to hear them or recommendations for good doctors anywhere in the country. Thanks!

Comments

Re: COMPLEX PARTIAL SEIZURES AND THEIR CAUSES...

Submitted by tahface2 on Wed, 2007-07-25 - 03:48
I forgot to mention she is 5...

Re: COMPLEX PARTIAL SEIZURES AND THEIR CAUSES...

Submitted by GodivaGirl on Tue, 2007-07-31 - 08:00
Hi: It sounds like your daughter's seizures are more severe than mine. I'm 33 and have been back on meds since age 16 (diagnosed at 5, break from meds age 12-15, back on 'em since I was 16 after a seizure triggered by a virus). This may not be what you want to hear, but my life has been a lot like your daughter's. Since I was 16, all my standard EEGs come back normal, ambulatory EEGs are inconclusive. CAT scans were always normal, and the MRI I had done when I switched doctors about 10 years ago was normal. The only thing that really shows anything for me is a sleep deprived EEG. All that did was confirm with my neuro, that I need to lead a pretty consistent life and make sure I get pleanty of rest, so I'm on a relaxant that I take at night called Clobazam. I still take Topomax & Keppra twice a day. Clobazam is just to help me sleep & through 'trigger situations' Thing is, I keep a seizure journal - what was different that day? positive stress? negative stress? sleep patterns? your daughter is too young, but for me, I track hormonal changes, then I also track things related to diet (aspartame, caffiene and sugar especially), and I also track weather changes. My neurologist in Toronto always says sure, the meds will help control the seizures, but with all the tests coming back the way they do - the best thing I can do is help him pin-point triggers & find ways to manage those. For instance, florescent lights can bug me at times. Well, I work in Information Technology - the last place I worked for had a tonn of those lights. With a letter from my neurologist my place of employment basically got me a decent glare reduce monitor. Also, you mention video games - I have a portable Nintendo that I play around with at times. And living with a total gamer, we have a PS2. My general guideline to avoid seizures is no matter what system I'm playing with, if I play games for about an hour, I'll go for a walk outside for 20 minutes. If I can't get outside, then I cut the game time in half & escape all screen like stuff. It's probably way tougher for you to manage the life of a 5 year old, than it is for me at 33 to manage life, but there's some ideas. Try managing the triggers more than looking for causes. As my neuro in Toronto says to me, each case is too different, and sometimes 'causes' are unknown really other than for some reason something in my mind causes all my brain waves to go all out of whack for a flash in time, then I get to nap for a bit while those waves re-align. Hope some of this helps :) EC / Godiva.

Re: Re: COMPLEX PARTIAL SEIZURES AND THEIR CAUSES...

Submitted by tahface2 on Tue, 2007-07-31 - 12:59
Thank you EC/Godiva This helps. We are just so frustrated and at a loss of what to do and where to go next while we wait for the 2nd opinion. We've written down everything we remember from both and we've had the family who witnessed the second one do the same thing. It's really scary and I'm glad to hear that you're able to live a normal life and work. We are hoping that she will possibly outgrow them like our neuro seems to think she might. I don't know based on everything I've read I pray she will out grow them but we'll see... Thanks again for the ideas every little bit helps. Tahface

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