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New here...Please help

Thu, 01/25/2007 - 14:38
I just joined this site a couple of days ago and have found the information and support to be comforting. Everyone seems so nice and helpful! My 9 year old daughter, Julia, has had 5 episodes since January 24, 2006. What she does is kind of strange and misses some key elements of a seizure, but is more severe than one would think of as a faint. MRI, EEG, EKG and ECG have all been normal. After the episode on December 13th, her neuro prescribed Trileptal 300 mg twice a day. Then she had another episode last Saurday and his is increasing her dose gradually to 450 mg twice a day. If she continues, his plan is to try a different med. If that doesn't work, he suggests getting a second opinion from a different cardiologist. Meanwhile I am pulling my hair out and spending hours researching on the computer trying to find a clue as to what is going on. Her neuro said that I should try to get a heart rate and check out the size of her pupils should she do it again as that would help determine if it is true seizures or syncope. What makes it even more difficult is that each time is different. 1. She has been standing at the onset each time except for the first where she lost consciousness three times and one of them was while she was sitting. 2. She is always unconscious for about 10 seconds. 3. Never has had incontinence. 4. Eyes are always open. Sometimes fixed, sometimes flutter, sometimes rolled back and one time nystagmus (eye jerks back and forth horizontally). 5. Always a little confused and sleepy, but never actually goes to sleep. 6. Says her legs feel like they are asleep before it happens. 7. Says she sees "Commercials" running fast backwards in her head. So, her events seem rather mild for seizures but extreme for a faint. I am so frustrated that I would enjoy beating up and old car with a bat. It is affecting her socially and she referred to herself as "Not normal" the other day. My beautiful little girl already has braces on her teeth which I think are rather cute, but to her it is something that makes her stand out. She just wants to be a normal little girl. The "wait for her to have another seizure" plan is stressing me out. I was wondering if anyone has had their child wear a heart rate watch (like you would use for exercise) and if so where did you find one small enough for a child to wear. If I am not with her or cannot compose myself enough to get an accurate hr, that plan is shot. My Daddy has Epilepsy so I am certainly considering that she inherited this. He had a Grand Mal at 17 yo after a lifetime of health and has been on Dylantin and Phenobarbital ever since. Now I find myself thinking about strange experiences I have had and wonder if there is a link. i.e. ringing in the ears, optical migraines, smelling things nobody else smells for days on end and the new one is a hot spot I feel several times a day on the same foot in the same place. I am beginning to feel like I am going to make myself go crazy. I would appreciate anybody who has some advice, opinions, comfort, whatever. Shannon

Comments

Re: New here...Please help

Submitted by jacksmom on Fri, 2007-01-26 - 12:50
bump up.

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