mom2koh Posted January 16, 2010 Share Posted January 16, 2010 Some background: DS who's 2.5 has had some issues with random falling (even from stationary positions), right hand tremors, and hypetonicity (high muscle definition) and slurred speech. These things come and go and are not persistent. His first eeg was normal. His mri showed a spot in the left side in the periventricular space. However, the doc called the mri normal. (?) We are now doing a video eeg. The doc has requested 5 days. Are we going to be expected to stay in a bed for the whole 5 days? Will my son be expected to be calm and still? Is it painful when they take the electrodes off??? Also, is the doc looking only for epiplepsy? Or something else as well? Can anyone share knowledge or experiences? Thanks! Quote Link to comment Share on other sites More sharing options...
unsinkable Posted January 16, 2010 Share Posted January 16, 2010 Some background: DS who's 2.5 has had some issues with random falling (even from stationary positions), right hand tremors, and hypetonicity (high muscle definition) and slurred speech. These things come and go and are not persistent. His first eeg was normal. His mri showed a spot in the left side in the periventricular space. However, the doc called the mri normal. (?) We are now doing a video eeg. The doc has requested 5 days. Are we going to be expected to stay in a bed for the whole 5 days? Will my son be expected to be calm and still? Is it painful when they take the electrodes off??? Also, is the doc looking only for epiplepsy? Or something else as well? Can anyone share knowledge or experiences? Thanks! My dd has only had an 8 hour video EEG. She was allowed to move around (play board games, read, sit up in chair or bed, go to bathroom). But she was older. I imagine it'll be a lot harder with a 2 yo over 5 days. She said the electrodes were like bandaids coming off. You'll be in my prayers! :grouphug: Oh, and cross post with the special needs boards. Quote Link to comment Share on other sites More sharing options...
mom2koh Posted January 16, 2010 Author Share Posted January 16, 2010 Thanks! I'll cross post right now. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted January 16, 2010 Share Posted January 16, 2010 I should add: They were looking for absence seizures. The RN/technician told me she sat in the monitoring room and watched my dd have about 4 in a 15 minute period. :( So for dd, it was pretty obvious & easy to spot. Quote Link to comment Share on other sites More sharing options...
Jan in SC Posted January 16, 2010 Share Posted January 16, 2010 My son had a 5 day video eeg when he was 5. The wires were able to reach all over the room which gave us a little movement. We took many movies and watched them all several times. Take lots of toys to play on the bed. My son was allowed to go to the playroom for one hour each day, but everything went with us. The tech will apply the electrodes and then put a large bandage over his head. It will look awful, but it will keep everything in place. Be sure to take button up shirts. I took about 10 and used them all! When it is over, they will put a solvent on the glue that will make them easily fall off. It wasn't painful for him. I had to have a nurse come in every morning and sit with him while I took a shower, or went to get a meal. (We were out of town, so it was just the two of us!) If he is in a crib, the video shouldn't see you, but if you share a bed at the hospital, you will want some better pjs! It is a pain, but hopefully will provide you with some answers! Good luck and if you have any more questions, let me know! Quote Link to comment Share on other sites More sharing options...
Beebalm Posted January 16, 2010 Share Posted January 16, 2010 My daughter had a number of these over the years...she's now 14 and off all meds. She had refractory absence. Here's how the video eeg works: you're in a hospital room with him fulltime. Because you're on camera the whole time, go prepared to have little privacy except in the bathroom. Everything is recorded in the room. The electrodes are glued to the scalp with an adhesive and then blown with a tiny handheld dryer-they aren't painful, just annoying. (However, my dd had long hair to contend with...your son might find them less difficult.) We've always found the technicians that do this to be quite patient and knowledgeable. Take front button pjs for him to make changing possible. At the hospital we went to (in Dallas), they had toys, many movies to watch, games and snacks to keep the kids as happy as possible. Take stuff from home he likes...toys, books, colors. My daughter started this process at age 6 so it was easier for me to occupy her. I even took schoolwork to try to reproduce some of the situations we had at home. He will be able to move about the room but will require your help to manuever the electrode wires for him. Don't forget yourself...take super comfy clothes, blankets, slippers....you can grab a quick shower when he's sleeping. Hang in there. I'm so sorry your family is going through this but pray that you'll get the answers you need soon. A very valuable website that helped me was epilepsy.org, ecommunities, parents helping parents. Even if epilepsy isn't the problem, info from parents that have been through this process can be very helpful. Praying for you. Quote Link to comment Share on other sites More sharing options...
Beebalm Posted January 16, 2010 Share Posted January 16, 2010 The hospital we went to had room service for parents too so I didn't have to leave her. I ordered every meal for both of us. You might want to check into that before you go. Also, some of the glue might hang around a few days even after the oily removal stuff they use. It's not a big deal at all. If you like, take a fine tooth comb to use before you wash his hair after they remove the electrodes. It removes a lot. My dd and I learned to use a little nail polish remover on a cottonball to dissolve it on her hair. Quote Link to comment Share on other sites More sharing options...
mom2koh Posted January 16, 2010 Author Share Posted January 16, 2010 Thanks!! We are so scared. :crying: The doc is pretty set on it being seizure activity so I guess we'll find out then. I will be sure to pack plenty of toys. Also, we enlisted both grandmas last night to bring new (small, inexpensive) things for him when they come to visit. I know the hospital has room service for parents as well so we will use that. But I had forgotten about the comfy items for me. Thanks beebalm! Jan in sc thanks for the warning about my pjs. DS usually is in our bed by night's end here, so I will probably sleep with him there. ;) Quote Link to comment Share on other sites More sharing options...
SquirrellyMama Posted January 16, 2010 Share Posted January 16, 2010 My dd never had to do a long term EEG but she has a very sensitive head. She hates to have her head touched but did very well with having the electrodes taken off her head. She is 8 now and off her meds. Yay! Quote Link to comment Share on other sites More sharing options...
unsinkable Posted January 16, 2010 Share Posted January 16, 2010 Thanks!! We are so scared. :crying: The doc is pretty set on it being seizure activity so I guess we'll find out then. I will be sure to pack plenty of toys. Also, we enlisted both grandmas last night to bring new (small, inexpensive) things for him when they come to visit. I know the hospital has room service for parents as well so we will use that. But I had forgotten about the comfy items for me. Thanks beebalm! Jan in sc thanks for the warning about my pjs. DS usually is in our bed by night's end here, so I will probably sleep with him there. ;) :grouphug: Oh, honey, I remember that scared feeling! :grouphug: Actually, just reading your description of what is happening to your ds made me feel so badly for you & your family! Our dd's seizures started when she was 6 and we found her in status epilepticus (didn't know it then...it was only after a few days in the hosptial after everything calmed down that the neuro doc used that term). But at the ER, the night it all started, I overheard the ER doc say to the EMT who brought dd in, "The tumor would be in the left half of the brain since it is her right side that is seizing." Thank God it wasn't a tumor! It was just epilepsy! I would tell people that...and my friends would say how positive I was about it...saying it was "just epilepsy." But in those first hours when they told me that most of the time when a patient presents like dd it is a brain tumor, bleed or lesion, epilepsy was a great diagnosis. All this to say, I am years into this, but I remember that fear and I wish you the best of all outcomes. Let us know how it turns out! :grouphug: Quote Link to comment Share on other sites More sharing options...
dragons in the flower bed Posted January 16, 2010 Share Posted January 16, 2010 This is probably different in different hospitals, but when I have had video EEGs, I've been able to walk around the room as much as I want to, even to go into the bathroom (which is off camera). The machines and wires are fairly flexible and the little one's head will be wrapped up in stuff that keeps the wires attached. It doesn't hurt most people. Pump it up, make it seem like an adventure, and you'll probably have an excited kiddo who doesn't note any discomfort. They may ask you to leave, but you may refuse. Sometimes doctors try to create situations that are stressful so that if that's what's causing issues, they can catch it. You are not obligated to help them stress out your child, and there's controversy in the community about whether or not this is a best practice. There are a good many things that can be diagnosed with an EEG. I can't say if your doctor is looking mainly for epilepsy. Quote Link to comment Share on other sites More sharing options...
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