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

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

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

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

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"

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

Thanks for the kind notes everyone -

We'll have to call next Tuesday to set up a meeting with the neurologist, and I have no idea what to expect other than my stomach flip-flopping a bit.

I'm assuming from there, we'll have to schedule an MRI, which will take another week or two, then wait for those results....

Waiting is pretty hard. I'm still in that dark spot and pretty worn out from the day. It'll be better once my wife gets home!

Still, I feel stupid for bringing it up at all since it's comparitively minor, at least for now.

Thanks all.

Andrew

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

Hi, My soon to be 9 year old son has been having seizures for over 5.5 years now. And YUP you have that dreaded ''hurry up and wait'' disease... all parents get that.

We all want the best for our children and want to ''fix'' everything NOW!

No question is stupid, only unasked ones... so ask away someone here has been there done that or about to.

Your daughter sounds like my son, perfectly normal except they just happen to have seizures. My son has a great label of "gifted" and I will take that and run with it (heh heh because he IS).

MRI's are a normal procedure as is CT scans. But most Neuros depend alot on the word of parents and the EEG. Start a ''journal'' of what is happening to your daughter before during and after each episode. Also write down questions in that journal so you don't forget to ask them of the neuro.

And keep ASKING here, we are here to only support and help as much as humanly possible.

Missy

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

Dear Andrew,
Please dont feel stupid for bringing anything up here. We all are here to help and support no matter what the issues might be. If you take the time to look at some of the treads on the site you will find that some of the posts are funny and goofy and concern alot of nothing (ie: wheres the sand man, What american Idol do you like, Songs of the 80s) So again dont worry about what you post If its important to you then its important to us
Pam

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

I was concerned when I read that the TECH told you there were abnormalities. A tech is not supposed to do that nor are they trained to do that. I am a lay person but I know the EEG is a complicated read and only should be done by your neurologist. I am not suggesting that means there were not abnormalities but don't freak out on his/her word. When my daugther had a 24 hour video EEG and and I tried to ask the nurses some questions when I thought I saw spikes or recorded events, the nurse said (and she does this day in and day out) she was unable to answer any questions. We are pretty new to all this with our 5 year old daughter. Take this one step at a time. Get a good neurologist-- we actually deal with an epilepsy specialist. The doctor will interpret the EEG. When you go to the neurologist, go in with notes. I came in with a chronology of events with dates and descriptions of what occurred. This is so important because so much of the diagnosis is based on a parent's description of what occurred with their child. Also, the child's exam is less than 10 minutes. We had my mom wait in the waiting room and then took our daughter to lunch and we were able to talk to the doctor without her being present. Our doctor amazingly talked to us for 1 and half hours. I would not expect that from most doctors but you do need to find someone who will take the time to really listen and explain to you. As to apologizing, each case is different and to different degrees. That does not make your situation any less frightening to you as a parent. We want to take care of our kids and fix everything and this is something you can't have control of. It is no less important than the most extreme set up circumstances. And just so you know, information here is power. I walked around like a zombie for at least 4 weeks and as I started to understand everything more and learned how to deal with some stuff, I felt my feet return to the ground. Good luck. If you have any questions, please write back.

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

Thanks again everyone.

Your kind words indeed help me feel a bit more grounded. I'm still going through the ups and downs of it.

All - I've been doing a lot of reading, and in fact have found -video- showing a few people with a seizure very similar to our daughter's.

The link is here http://www.neurology.org/cgi/content/abstract/63/1/40

And the video link is on the right. In a way, it's reassuring since this seizure type is relatively uncommon.

So the terms I've been coming across that at least seem related are:

-simple partial seizure (which we believe this is)

-generalized photosensitive epilepsy

-nonepileptic paroxysmal eyelid movement

-eyelid myoclonia without absences (our daughter is not experiencing absences)

-self-induced photosensitive epilepsy (which can be caused by intentional rapid blinking; we tried this several times, and our daughter didn't sieze, so this may not be a factor)

----

Pam - you're right about the deep breath... it helps with the dizziness a little ;) Of course our greatest hope is that she outgrows it, and that she does not suffer any embarrassment. Of course, part of our (my) guilt is that I don't want to have to go through the motions of explaining to our friends, and bumming them out. We have two BBQs this weekend.. But we're always open with our friends and thankfully they're wonderful as well. We've discussed the "nervous habit" she has with them, and I feel like we'll probably tell them.

Scott - I'm anticipating the doctors will be nice as we are going to a children's hospital as soon as we can set the appointment. It's reassuring to know it's possible to grow out of the condition, and I wish you all the best. I'll probably email you for that list.

laka0401 - I'm sure you're right about feeling better once we know what's happening for sure. Waiting to find out is hard, though I also think that if we hadn't had the appointment for the EEG this week, we'd be carrying on like normal and enjoying ourselves.. so that's what we'll try to do this weekend!

Hi Missy - thank you for the kind words. We don't have much as far as a journal goes - just really when we first started noticing her "twitch" and the conditions in which we do and don't notice her doing it. Our daughter is very smart and good at a lot of things, so we'd like to think she's gifted ;) but really, as long as she's happy and healthy, we're happy!

Hi Pam- I sincerely appreciate your support. I think I feel a bit sheepish because normally, in computer and other forums (in which I normally post) I search for an answer to my question and find something... but here, I'm so new and still overwhelmed.

ekoorb - thanks to you, too. I even said to my wife (after the fact) that I wish the tech hadn't said a thing - though I did ask. My bad! Although, as I mentioned, the tech asked my daughter if she "felt funny" after one of the strobes, and in retrospect I guess she should know that parents can get pretty upset and that she should have not said anything. I guess the best result would be that the tech somehow made a mistake, but I doubt that's the case. Oddly enough, she also mentioned that she was having some trouble with the device wires, but again I doubt that it had too much impact.

Well, we're taking it a day at a time and I have to say that my wife has been just fantastic. I guess I get emotional and overthink things all the time, and her balance is just what I need right now.

Have a nice day,
Andrew

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

One additional thought- get the book by Dr. John Freeman- it specifically deals with childhood epilepsy. Good luck.

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

blueheeler1998
Hello. You sound like me at Christmas time. Our five year old daughter has seizures also (Stress EEG abnormal in left frontal lobe) I will say, you may be sure surprised to find that your neurologist may believe your daughter will outgrow this eventually. They will probably still won't to get it under control. Be patient, our daughter is still not seizure free as it takes a long time to get the medications right sometimes. You may want to check family history too. I never knew before, but I have an uncle and cousin on my father's side that had seizures as children. They both had tonic clonic seizures, but thank God, my daughters are more like your daughters. My daughter has done this her whole life and we never knew what it was. Only when it got worse when she started preschool did her doctor pay attention to it and send us to a neurologist. By the way, my uncle and cousin both out grew it. A book I highly recommend is "Children with Seizures" A guide for parents, teachers, and other professionals by Martin L. Kutscher MD. It is very informative. Best of luck to you. blueheeler1998

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