Epilepsy testing
 

My son is going to have the epilepsy testing done on the 13th he will be in the hospital for 7 days. Can anyone tell me what to expect...they said thathe will have an MRI, EEG and then take him of his meds......I wanna have a plan an a idea ofwhat to expect when I go..

Thanks

Oh and to anyone that has had brain surgery to remove the affected part of the brain can you chime in, Im having a terrible time even thinking about doing this..

Kimberley

If it's anything like what my husband went through in May, here's the scoop.

They will hook your son up with electrodes (glued to his head). These will record his brain activity the entire time he's in the hospital. They will probably have a video of him during his stay.

The doctors will slowly wean him off his meds to help bring seizures on so they can record the information.

It took 5 days before my husband had seizures and they ones he had were horrific to watch. My husband has tonic clonic sz and they are bad enough to witness when he's on meds but when was weaned off, they were 100 times worse! Don't feel guilty if you cannot watch or stay by your son's side during the seizures.

After 3 seizures, I decided to go home. I couldn't take the visual any more. I was a complete wreck mentally and physically.

They recorded 6 seizures. Unfortunately they were unable to pinpoint where his seizures were beginnning. They concluded they were starting much deeper than what the electrodes could pick up being attached to the head.

I pleaded with the nurses that 3 seizures were enough and to start him back on his meds, but the doctors wanted to capture as many as possible. It broke my heart seeing my husband going through so much.

Later that night they started his meds up again. The next day was Saturday and I went to see him. I knew he was in a lot of pain and he couldn't talk. He just sat in the bed quietly sleeping. The following days he got his strength up little by little and started getting stir crazy.

The doctors told us the next step if we wanted to know where his seizures were beginning, they would have to open his head and place electrodes on the brain. We haven't opted for that step yet. He started a new add on - Lyrica, to Tegretol XR and Lamictal.

Good luck and don't knock yourself down if you can't handle the rough stuff during this visit. I was so grateful for the Epilepsy Unit nurses and sitters at Beth Israel here in Boston!

thanks
 

thanks for all the information, Im not sure what I should bring with us, for him to do....he is 12, I was wondering if Im allowed to bring snacks for him that he likes, etc.

Most places let you bring anything you like. I brought my own food and had my partner bring me some, as well. You should be able to bring movies, too. The room I had, had a DVD player and also had hook-ups for gaming systems like playstations and whatnot.

Here is a link to my VEEG information. Don't let it freak you out, though.

Make sure you don't bring chewing gum though, they won't let him have it (chewing messes up the readings).

kenausril, I had this done for 3 days and the worst thing was the boredom & trying to sleep at night with a light shining on me. I had a TV so that helped but take other things to do...maybe somehow you can hook up a laptop (or there's battery), some magazines he likes, crossword puzzles, paper & pencils, does he have an I-pod?. I'm sure theres other things to take but I can't think. Also take an eye mask or something, to put over eyes if he wants.
Good luck to your son :wink:

Hi kimberly
 

I'm an old woman so it sure won't be the same for your 12 year old ;) but I've had the VEEG twice in a university hospital and I've had no problems at all. Sure it's no fun but but I was happy to see the amount the doctors were learning about my seizures.

My first stay before surgery in 2006 was 4 days and my last stay, this year, was 5 days. Both times I had my "usual" complex partial seizures after reducing meds.

My husband refused their offer to spend night and day (no charge) with me.

I took lots of books, embroidery, cross word puzzles, stuff like that. Food was awful but I did just fine.

They tried to "force" me to have seizures so there were "tests" with the 'light shows', bikes and things like that. Time went pretty fast.

Yes, they let you bring any food you want in. David's parents and I took turns bringing in italian food for him and Dunkin Donuts coffee.

David complained how bored he was. I brought him his iPod, magazines, DVD player and books. There was a TV in the room.

He loved watching the Red Sox games at night but during the day, he was just bored to tears. He used his cell phone a lot to talk to friends.

They did that to me, too. They tried to get me to get drunk! I wouldn't though. Even if they wanted/needed to see a seizure, I do not like more than one drink or I get deathly ill.

Hi,
When I had my e.e.g they did everything that everyone else has mentioned except how they made me drink diet soda because it caused me to have sz. and they also kept me awake for many hrs. to make me have a sz. I did word search puzzles and did a lot of writing while I had my veeg done.
Other e. testing that I had done was an MRI, Ct scan, Pet scan, Spect scan and wada test. All of these tests show the area of the brain causing sz. along with what area of the brain is being used for most of a persons memory and speech. I found the wada test amazing, that's where they give a person a shot in the groin and half of the brain goes to sleep for awhile and then they have you read index cards, and look at pictures of the same person but 2 are the same and 1 is different. You have to pick out the picture that is different. It's amazing how I was able to do all of this with the right side of my brain asleep but when they put the left side to sleep. I couldn't speak even though I knew what the words were they wouldn't come out of my mouth it was like someone whose had a stroke and ends up with a speech problem. Here's wishing you and your son only the best. May God Bless You Both!

Sue

I just had one 2 months ago. Unfortunatly, I was in the noisy area, so do bring some headphones & great ear plugs. I would have left shortly had I not had them. Whining complainers I have no patients for. Had a DVD to kill time. Like it's been said, anything to keep from being bored to death.
Comfy clothes. Gowns are a joke, so pack his every day wear. As stated prior, eye patches come in handy.
Aside from the crappy food, noise & that cord that kept being twisted it was not a big deal.

flopper - you wore everyday wear? Wow.
I was REQUIRED to wear easy open-down-the-front PJs or hospital gowns.

And while they were putting the stuff on my head a RN inserted a IV into my arm and a fresh one was inserted and taped down every morning "just in case I needed it" for some reason.

I could not leave the bed for ANY reason at any time. When I needed to go to the bathroom I hit the button and waited for assistance. :confused: They were concerned that I might have a sz on the way to the bathroom.

Every hospital is very different.

When I had my vEEG - I was permitted to bring my own
clothing as long as you can unbutton from the front.

One of the hardest thing is trying to be FORCED to stay
awake if your Epileptologist / Neurologist orders it. It's
boring, boring, boring.

However - they will NOT permit you out of bed if you have
electrodes that have been inserted in your jaw or head.
PERIOD.

As for the cables - you will be free to roam about, but
there is a way to walk around and keeping you from being
twisted is to coil the cable first as if you were holding a
microphone and walk with you - releasing as you go and
vice versa.

If there's nothing good on tv - you can always watch your
Digital EEG - it can be pretty interesting watching the XLEvent.

:cool:

Those folks failed to tell me anything to expect. You guys pointed me in the right direction. They didn't demand anything & I didn't complain, so we departed on good terms.

Now I wish I would have known about the cable trick though.

:o I now see how I mis-spoke....... when I needed to go to the bathroom I hit that button and someone came to "help" me get there and waited for me come back out so then could "help" me back to bed.

Same thing when I needed to brush my teeth or try to take a sponge bath (of course, a regular bath or shower is impossible with all the electrodes wired to your head) .... Someone helped me out of bed, walked me to the bathroom and left me alone (microphones listening to me but the cameras could no longer see me) but waited until they could escort me back to bed.

It is NOT as bad as it sounds ...... all hospital people know what you're going through and are ready to help you, soothe you, laugh with you and just plain - be kind.

I had one difficult partial complex and when I was waking up, having a hard time, TWO RNs were sitting with me on the bed hugging me (Hugging ME !!!) and being gentle. I still cry when I think of such kindness.

I'm one of those people that want their space. I had the seizure on the first night & when the RN left to get the ativan & drugs the "baby- sitter" asked if the flop was done & how I felt. Of course, I said I was great. She bolted & so did I. Stumbled off to the bathroom & that was a chore. :o) She was right there when I got out & helped me to the bed. The only other time I couldn't go anywhere w/o assistance was when I finally got that thing off my head & went for a shower. Had the station not been right on the other side of my room, I would have bolted for the shower too. So I guess we all have our priorities. Had I been torchered to stay in bed it would have gotten ugly.