Hi, new here with a lot of ?s

[Julias Mommy]

My two year old daughter is going through testing to find out if she has epilepsy, following what her family doc and myself believe to be seizures.

The first was Jan 22, included an arm injury with no trauma to the head, within 2minutes of fall had what doc believes was a grand mal, quit breathing and eyes rolled up, went limp, collapsed on the ground and convulsed for approx 40sec, then blinked a few times, got up and acted like nothing happened.

Second incident was Jan 23, tripped on a rug and hit coffee table on her cheek. Within 2 min went from fussing a little to quit breathing, eyes rolled up and went completely limp, except for jaw which was locked shut, lasting for approx 20-30secs, blinked a few times got up and was off and running.

Third time was Feb 9, sitting on my lap in waiting room for her sister. She was drawing and went limp, hadnt had a nap so I thought she was asleep. Waited a few minutes to make sure and asked a friend if she was asleep and she said no her eyes were wide open. About that time she started shaking so hard she was vibrating, but it was just head and torso, arms and legs were limp. Saw she had the pen she was drawing with in her mouth, took it out and she caught my finger, pried it loose and her jaw locked up. Vibrating lasted approx 45-60sec, then it quit. Not once during did she move her limbs or make a noise or blink. After it was over she sat up in my lap, took the pen and started drawing again.

We go for a 4 hr video eeg on Feb 15, followed by 72hr ambulatory, then will see pedi neuro on March 3.

After talking to her doc, we now realize things I had brought up previously with her such as staring blankly into space for minutes at a time and not responding to shaking her head back and forth, also for minutes at a time before, beginning when she was appox 8mths old may not have been "perfectly normal, nothing to worry about" but a form of seizure activity.

What all should I expect? Will an EEG really be able to show if she has EVER had a seizure, and if not if she doesn't have one in the office will they be able to tell me anything? What all does a video EEG entail other than electrodes glued to the head? What all is an ambulatory aside from we take her home all hooked up and pray the two yr old doesnt get an electrode unhooked because the pedi neuro is a 2 and a half hour drive from our home? What other types of tests can I expect? Is there a way for me as a parent to know if something shows up on it that is out of the ordinary prior to the doc giving the results? If it shows no seizure activity, any ideas what may be causing all of this?

Sorry post is so long, I am just completely lost on this and feel like I am in way over my head. The doc after number two said it was most likely triggered by pain, so I knew what to look for then, but now with the third it seems it can come out of no where and I feel really helpless, I dont want to let her out of my sight! I wouldnt even know what to look for to identify, aside from the first one which was pretty darn text book. The second two I thought were just odd behavior until doc said no, it was seizures.

Thanks in advance.

 

[skillefer]

Hi Julia's Mom!
Welcome to CWE. Epilepsy can be very scary for parents. Especially when it comes to watching the seizures. As to what the EEG will catch, honestly, that all depends on whether Julia has a seizure during the test. I've had the E diagnosis for over 20 years, and only had one abnormal EEG.

 

[Nakamova]

Hi Julia's Mom, welcome to CWE!

There are a lot of different kinds of seizures, not just the kinds with convulsions. There are kinds where the person remains conscious, but just seems to have spaced out, or ones where muscles tense up, or the person has unusual sensations.

The EEGs may give a sense of where in the brain Julia's seizures originate. For a regular EEG, the patient is stationary with the sensors attached to the head, and what is recorded are the brain waves during a certain length of time, usually with the patient asked to breathe shallowly, and respond to flashing lights. A video EEG records actual behavior in addition to the brainwaves, so if your daughter "spaces out" and that corresponds to abnormal brainwaves on the EEG that will help confirm a diagnosis. An ambulatory EEG allows for monitoring over a longer length of time, but you do have to be careful that the electrodes don't get dislodged. Other tests that might get include a CAT scan or MRI to see if there's anything visible in the brain that might be contributing to the seizure symptoms.

Feel free to keep asking questions. I recommend that you write down all questions you have for the neurologist and write down the answers as well. Make sure you have and understand as much info as possible.

Best,
Nakamova

 

[RobinN]

Welcome Julia's Mom -
I hope you find CWE to be a source of support and research to move ahead with knowledge.

 

[Jellbell11]

Hello i am Jellbell's mother and she called me to the computer because she read your post and wanted me to answer questions. my daughter has had seizures for about 4years. it is a hard road and yes she had had grand mal and absence seizures. Right now she is having what i call black outs. she will be talking and having fun and all of the sudden she falls down and looks like she is faking because nothing moves. Then she will get up and be very hyper and act as if nothing happend. We went for an overnight 24hour EEg to see how her seizures work. Now she use to only have the seizures in the frontal lobe but now they are all over. The EEG shows what they call spikes and waves and she does have them in sleep but they dont consider them seizures just the brain activity of a person with epilepsy.Now people with epilepsy are very sensitive to flashing lights well most of em are so when they do yours they will hookup all these electroids to your daughter's head and they may either have this light flashing right in her face over and over and over again and they would prefer for her to be sleepy so she wont move and at times they will even have her blow on an object. yes sounds strange. so please make her be sleepy they can get good results the first time. It will show how often she has seizures and exactly pinpoint them out. When we did the overnigt EEg my daughter is like the princess of the floor there because they are treated like royalty!!They watched us with a video camera in the room the entire time. I hope this helps but if not please feel free to ask us anything.

 

[RobinN]

EEGs and the VEEG was not helpful in figuring out the reason for my daughters seizures.
If that is the case with yours, don't give up. There are many reasons that the brain malfunctions. Many times it is a mystery to the medical community.

 

[Julias Mommy]

Thank you all for the information. I guess I am just feeling guilty that I didn't know what was going on sooner. With the violent type it was easy to spot, but thinking back on all the odd behaviors when she was really little makes me think I missed a lot

 

[Nakamova]

Don't beat yourself up -- it's hard for a 2-year old to tell you what's going on, and hard to look for something if you don't know you should be looking for it.

 

[skillefer]

Please don't beat yourself up! I have a 7 month old at home...and honestly, there are some things that I might miss....as they say..hindsight is 20/20.

 

[lesley1110]

Hello,
My daughter was diagnosed with epilepsy 6 months ago, she has a type of epilepsy where she only has seizures during sleeping.
I know exactly the feeling of guilt and the absolute terror that you are going through, it is really frightening.Hers were fullblown,8 minute seizures. I too didnt want to let her out of my sight.

She had an EEG which did reveal this condition, the diagnosis was a relief but brought with it lots of other worrys- we are Mums, worrying is part of the job!

You have to be kind to yourself, make sure you try to get enough sleep,eat well and have a good friend to talk to. If you do then I found that I could cope much better and be a bit more rational about everything.

My daughter has been on medication now for three months,(there are lots of different types) and she has been doing really well, so far.
I am starting to get my head around things and we are getting back to normal, well a new normal!
You and your family are in our thoughts, I hope all goes well.
Lesley