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Hi... new here, scared dad... EEG abnrml in 6 yo girl

Fri, 05/26/2006 - 11:13
Hi everyone. Let me begin by saying I'm scared like I've never been before, and am pretty emotional (and often overreactive). Sorry if this is a little bit of a ramble. The story so far: About 6 to 7 months ago, we noticed an odd facial expression in our daughter (5.5 at the time) which was/is limited to a very brief (about a second) motion in which both eyes roll back and her eyebrows raise. It looks almost like she's being snooty! :) At first we thought it was just something she was imitating, and over the months it hasn't particularly increased in severity, though it may have a little and we've just not noticed it. A few odd things about it: it barely seems to happen when doing certain activities, such as when she's watching tv, drawing or coloring, or reading. Other times we see her do it while "contemplating", such as when she's switching activities. It happens most when she's waiting in anticipation for something, such as at a birthday party while in line to limbo or waiting for a balloon animal, and happens frequently while speaking with her. She might go ten minutes coloring without us noticing, but then we ask about dinner or something and she'll do it 3 or 4 times. When we first brought it up to our pediatrician, he said it was most likely a tic. I asked if we should see a neurologist at the time (and wish we had) but he sent us to an eye doctor instead. Argh. The eye doctor said everything was normal, but we already knew her vision was OK... So at our kids' annual a few weeks ago, we brought it up again and was advised to see a neurologist (duh) and this moring we went for the EEG. The EEG was abnormal; I got really scared when the tech asked my daughter, after one of the strobe sequences, if she "felt funny". I asked and the tech said that the EEG was abnormal and a few particulars that I picked up (while feeling a bit sick) was "right frontal lobe", abnormal during photic stimulation, polyspike, and slow-waves. I came home and began searching around, basically tiring myself out. I'm feeling emotionally drained and am running the full gamut of emotions from "it's probably nothing" to... well, everything else. Other than this, she is normal athletically, very smart (one of the top readers in her class) and very good in art... just basically a great kid. We have to wait until Tuesday to schedule a meeting with the Neurologist, at which time I'm guessing he'll schedule an MRI or something. The waiting maybe is the hardest part. On me, anyway. (My wife seems to be doing fine... ) I feel like I'm whining a bit here, since many of you have far more going on...and while running through these emotions, I'm feeling seflish, guilty about it being somehow my fault, guilty for not wanting to accept this will affect our lives, scared, angry, furious, anxious... everything. I'm not expecting to read someone writing that they know exactly what this is, and will go away... though I'm hoping for the best, of course. Beyond the possibility (or certainty) of epilepsy, obviously, are tumors, and whatever else may cause this. So, thanks for your patience in this ramble and I appreciate any comments or advice you may have. Thank you! Andrew

Comments

Re: Hi... new here, scared dad... EEG abnrml in 6 yo girl

Submitted by rootbeergirl16 on Fri, 2006-05-26 - 11:41
Dear Andrew, First off take a big deep breath and try (although I know its very hard) and relax a bit. All the emotional ups and downs you are feeling are very normal. I am new to this whole this too. there are so many people here with lots of good insite and advise. They say that alot of childern can outgrow Epilepsy and there are many different kinds of Epilepsy (or forms) I know that for my daugher who is almost ten hers are brought on by lack of sleep, stress and have only occored at night. I think that the doctor can bring more light to the situation. Also I strongly incourge you to seek a second opion with you are not comfortable with what the doctor says or the amout of medication he might percribe. I am hoping that some of our wonderful members that have more insite than I will respond to you. I just wanted you to know that someone heard you and you are not alone in this. I am sending you many good thoughts and wishes Pam

Re: Hi... new here, scared dad... EEG abnrml in 6 yo girl

Submitted by ScottM on Fri, 2006-05-26 - 12:00
hey andrew, i know how you feel. when we found out our daughter had epilepsy we asked how???? we were asked did she ever have a high fever, Nope, did she ever hit her head, (at 8 mnths old she was walking yep thats right walking at 8 mnths. hard to believe but she climed out off her crib not one but twice) so i guess if thats hitting her head then yeah. but other than that none. long story short. listen to what the doc has to say, if he or she doesnt not answer your Q's to your satisfaction or in a way that you fully understand them, then find another doctor that will. thats what we did. the first doctor was rud, short on his answers, when asked to clarify he just said thats as clear as i can get. so we found another doctor. my daughters started out on xmas morning of all times to start or atleast when we noticed it. she just stared and stared in space while we were opennig gifts up. then they progressed into gran mals. at first they were controled. well atleast she would be ok or 6-8 mnths then bam.....she would have one or two. now they are getting closer and closer so were seeing a splist on tuesday Neuro surgen. not sure what will come out of it but were hoping something good. oh by the way my daughters is "right frontal lobe". they can grow out of them from what everyone has told me if so let that be the case. ask the doc lots of questions.. if ya need a list just email me for one. i have a three page one that you can modify to your needs. scott

Re: Hi... new here, scared dad... EEG abnrml in 6 yo girl

Submitted by laka0401 on Fri, 2006-05-26 - 12:28
Hello Andrew, I am very sorry to hear what is going on with your daughter... I am still very new to this also. My son (5) just had his first grand mal a couple of weeks ago. His EEG also came back abnormal, and his neurologist classified it as Begin Rolandic epilepsy. I was extremely scared and confused (still am a little) but when I think about it and I count my blessings I am so glad that we found out what it is now, because I have been told that it can take more than 1 EEG to find anything. I know this is not much help to you and everyone has already said this but there are alot of wonderful people on this site that can be much assistance to you. I like to get on the chat boards, because I feel like I am really talking to someone that understands and that can answer a few questions for me. Hang in there and let God take board in all of this, listen to your dr. and try to stay as calm as possible for your daughter...they understand so much more than we think they do. Well I hope you find some answers soon, it is so hard not knowing anything!! "You're body is only temp. here on earth, but it heaven it is for an eternity"

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