Anyone ever had to go for a long term video EEG?

[D L and K's Mom]

We are going into the hospital with DS for a Long Term Video EEG? We were told to plan for 7-10 days. It was short notice so I didnt get to ask many questions and now it is a holiday weekend and we go in on Tues. I did get a little sheet with some info but not much. Anyone ever do this with their child? I am worried because DS is not high functioning. He is at the 18 month level and he is 16. I think he is going to take the electrodes off as soon as he can even if we are there watching him. It is going to be afight to keep them on for any ammount of time. I was told I have to be with him 24 hours a day ...no problem there I took time off from work but I was also told he will have a few days of sleep deprevation.....a few of high stimulas...a few of low doses of meds....I just think I am going to be the one who has a seizure brought on by STRESS!!!! I know he will be ok for the one where he is sedated but the other days are going to be a constant fight. My husband will be up to give me a break (so I can shower, eat, breath, etc) but only in the evening when someone can come and watch the other children. I am worried because DS can't bathe and he is going to be in bed the whole time.....he is in diapers it is going to be so hard to keep him clean!! Help...please tell me I can do this!! My Dr. thinks it is the best way to get answers as to why he is having so many violent siezures after being seizure free for 7 years. We have uped the meds etc....anyone ever done this with a speical needs child before.

 

[mommyandmore]

This won't be much help but I have seen the long term EEG done about 8 years ago with my college roomate when she was also having a huge increase in seizures. It really helped a lot with her and they figured out more of her triggers and were able to adjust the meds because she was having clusters of little seizures that we didn't see that were leading to big seizures. anyways, visitors were definitely allowed for her so maybe you could get frineds, respite workers, family members, or whoever to give you breaks? She watched a lot of TV- does that help your son? Maybe pack some favorite videos? Oh, I remember 1 day they had her go without food- that was hard for her and I imagine your poor son won't understand what is happening- don't know how to get around that. And I know with my own son (special needs) they have child-life people at the hospital and they are really good about understanding his particular needs and will search the place to find the types of toys he likes- last time he was having a tendon release done they even found him 2 matchbox cars instead of the teddybears they give you for surgery and they let him hold them through the whole surgery. Does he have a stroller or a wheelchair that he is comfortable in? I would bring that so as not to have to rely on hospital provided ones.
Good luck and I hope that you get some answers.

 

[BCV23]

Lots of hugs to you, your son and your whole family. You can do it!

Our daughter had a much shorter video EEG many years ago. I don't remember how long they told us it would be upfront but not nearly as long as you're facing. It ended up not even being 24 hours as they were able to determine she wasn't having seizures. I hope your son's goes faster than they think right now. But however many days, we'll be thinking of you both.

One thing I wouldn't worry about is keeping him clean. The nurses will be know how to do that.

 

[joanchris]

I've been there....a few tips, since he'll be there for a long term ask to have him lightly sedated (if you think it will help and are ok with it) to get the eeg leads on....it's hard to keep my daughter still enough and calm enough to get them on, she gets very agitated (they tried to tell me they couldnt' do this as it would affect the readings, but it will wear off soon enough since you're planning on being there longer).
also, staying in bed all the time may actually lead to LESS seizures, if you son is normally mobile ask that he at least be alowed to move about the room some, with supervision, of course. For myself (i also have a seizure disorder) it turned out that laying in a hospital bed all day watching TV virtually made the seizures disappear, I needed to be thinking, using my brain. Once we figured that out we were able to bring them on.
Also, if your son 'cooperates" by having a few seizures early in the week they may let you go home early. For once, hope he has a few.
The EEG leads are glued to the scalp, and are difficult and painful to pull off AT FIRST, but over days they will become easier to remove, and may need to be re-glued.
When it's all over, the easiest way to remove the remaining glue from the hair and scalp is with a fine toothed comb. It may take days though to get it all out.
If I think of any more useful tips I'll post again.

 

[SueM in MN]

There is a line from Romeo and Juliet that probably fits here:
"For in an hour, there are many days." I'm sending lots of pixie dust for your hours to be full of minutes, not days, the test to run smoothly and give the answers that will help your son.

I don't have a lot to add to the good advice you got, since my DD has never had one. I've seen video/nursing education of people having one done, a friend had one done about 20 years ago and another friend's son had one done about 5 years ago.

I do know that if they find out what they are looking for, they will shorten the test like BCV23 mentioned. I've been told the hardest part can often be waiting for a seizure (it seems like when you want one for them to be able to observe, you don't get one). That's where the "few days" part comes in. For some people, a small amount of sleep deprivation (or whatever stimuli they are looking for) will bring a seizure; for some, it may take a few days. When they see a seizure with that stimuli, they can usually cross that one off the list and go on to the next type of stimuli.

Your hardest task will be to keep him in view of the camera at all times, but that may not mean being confined to the bed. He may have a range of locations in the room where he can be. I'm sure that they will have done the test on children like your son (or children who are 18-24 months by age and by development). They should know some "tricks" to help you/him out and ways to keep him from pulling the electrodes off - one way is to cover them with gauze. I know some people who won't leave IVs alone don't even give them a second look if they are covered. So, they will do everything they know to make the test less traumatic. The best way for you to help is to be exactly what you are - an expert on your son.
I second the advice about having friends, etc maybe lined up to do some respite for you.
As was already mentioned, the nurses will have ways to keep him clean. They can do bedbaths. The hospital where I work has many people with spinal cord injuries or comas who can't get out of bed for bathing. We have ones in our hospital that come prepackaged with nice soft disposable washcloths and are microwaved to warm them. They also do something called "Bag baths" where they put a small amount of hot water and a diluted skin wash product in a zip lock bag with 6-8 washcloths. The washcloths stay in the bag (and warm) until they are used and patients really like them. (A lot of people ask where they can get the prepackaged ones for use at home).

Another thing to think about is clothing - you want to bring things that will open down the front (you won't be able to slip things over his head. Also anything that is static-y can cause "interference/noise" on the video. I've heard also to avoid thing with stripes or lots of pattern (apparently the video cameras autofocus try to keep stripes in focus or something). If the fact sheet they gave you doesn't mention those things, maybe my information is old.

Here are some good websites with information:
Video EEG fact sheet from the UK

University of Iowa Fact Sheet

I found a lot of other references, but they were either too clinical or repeated what these said.

I KNOW you and your son will get thru it and hopefully it will give the doctors the information they need to control his seizures.

 

[D L and K's Mom]

I read the info anf found it all very very helpful. David will be wearing one piece zip up footed pjs. He spends quite a bit of time in these so he does not pick his diaper. We just had a huge huge seizure !! It was less than 2 hours ago. We had to call the ambulance as the seizing was so violant and he was having trouble breathing...I hate this!!! I feel like ever time he does this we ar losing a little piece of him. I am so sad. I am hoping he has a few in the hospital...that sound horrid. but I really want them to figure out what seems to be the trigger. I personally think it is his sleep...if he has too little he seems to have one or if he has too much he seems to have one. Also the past 6 have been while he was on the bus or in our car?? I have mentioned this but it was brushed off. HAve you ever heard of someone being too stimulated while in a car...motion?? Oh well. Thank you all for the info it was so helpful and just nice to know that people are out there who have had this procedure done. Keep us in your thought and prayers this week.. I will post the results later. Thanks again.

 

[SueM in MN]

I am hoping he has a few in the hospital...that sound horrid. but I really want them to figure out what seems to be the trigger.

No.
That doesn't sound horrid. It sounds like a mom who wants to help her son.
And the only way to help him in this case is for him to have some seizures.
So, while you don't want to se your son suffering, if he has some seizures in the hospital, it will help get to the bottom of what is going on.

 

[mommyandmore]

Re: the seizures in cars/busses- my college roomate that had the long term EEG got so bad she couldn't go in a car for a while because they always triggered seizures. They figured out with her that it was a visual thing with the flashes of light soff other cars, etc. She wears sunglasses in cars during day and night now and does much better. I also had one kid in my class (special ed teacher) who was triggered by swings- they figured it hads something to do with the vestibular stimuli. I would make sure the doctors know about the trigger you are seeing- sometimes you have ot make them listen

 

[D L and K's Mom]

I am going to make them listen this time....they are not really being pro-active. We are now seeing a new Dr. and I like him a lot. I am going in armed and ready with lots of info.....My husband thinks I am crazy but I am going to get everything done that we can while we are there. If they cant figure out why then at least I know we have done everthing to get to the botttom of the cause where now I think we are just upping the meds...upping the meds. Thanks for all the kind words. I am off to pack our stuff!!

 

[spotdog]

I had my 5 days of video EEG in Seattle, 13 years ago, and the staff was ready for anyone at any level of functioning. They covered my leads with a secure cap so I couldn't pick at them. They allowed me to get out of bed and pace the room if I needed to.

After 7 years of treatment for complex partial seizures, I was both relieved and confused to learn that I really was having severe panic attacks. I am now somewhat socially limited, but self-supporting on appropriate medication and therapy.

It sounds like your child is having true seizures, as well as other disabling conditions. I just want to reassure you that the staff at any major hospital treating severe seizure disorders can deal with diapers, agitation and low functioning behavior with no problem.

Are the doctor's considering that your child's seizures could be treated with surgery?

 

[D L and K's Mom]

At the moment they are not considering surgery because he has been seizure free for 7 years. We have jsut started back (first one was in WDW on July 5) The problem is they are frequent and very very violent. We are going to go through the changing of the meds, the long EEG etc. to try to find out why they are now occuring. I think it has to do with Driving and motion as well as his sleep patterns...but who am I , I am just the Mom. I will be going with David on Tues (tomorrow) I will post when I return in 7-10 days.

 

[SueM in MN]

Good luck.
We'll all be thinking about you.

 

[spotdog]

I do hope that the doctors find something that will help them to treat David. You sound like such a devoted mom.

 

[rafiki77]

I can't really give you and info, but can say that my mother due to having an adverse reaction to the "small pox vaccine" suffered from a seizure disorder. She would have 1-100 a day, yes that's right and not an exagerration. From the time I was 10-13 years old, she went to UCLA every other month for the long term video EEG. My heart goes out to you, and anyone else who knows someone who has seizures. You all are in my prayers.

 

[D L and K's Mom]

I am home on a break from sitting at the hospital. DS has been hooked up since Tuesday. It is hard. I have to sit next to him on the bed to hold his hands so he does not pull off any of the electrodes. We put socks over his hands and velcroed them down. I still have to sit on the edge of the bed . I am sick of BARNEY, The Wiggles and Jeopardy. They started to decrease the Tegratol on Tuesday. He has not had a seizure yet!! I am going nuts. He had a seizure on Saturday last week and now that we want one he wont have one!!! CRAZY. He is also very very constipated. Since he is just laying in the bed and not walking or moving he has not had a BM. We gave him some med yesterday. They started him on a small does of a new med last night..he vomited. This is so hard. I have to sit there and sit on the side of his bed so he wont pull off the electrodes. I have to curl up next to him in bed to sleep and hold down his hands. He is a big kid and there is not much room at all. HE has not slept the last 2 days at all....no nap, no sleep. He just is not tired, no meds (well a new med but a tiny tiny dose) so he just wont sleep. I have to call a nurse so I can go to the bathroom etc. I hate this. DH came up last night and I came home with the girls so I could have a break. The house is a mess!! I have no time to clean it up as I am going to go back to the hospital so DH can come home for DD's volleyball game. We will be in the hospital until at least next Tuesday. They are still hoping for a seizue but regardless they want us to stay so they can find a new medication. Ok thanks for all the kind words. I am off to re-pack and go back to the Hospital!! I am living in my Pjs. I sleep, get up sit on the bed, take a shower and get dressed into new Pjs when DH gets there after work and start again. I am glad I got 3new pairs of Mickey flannels for Christmas the room in monitored (Video and Audio) so at least my pjs are CUTE!!!

 

[SueM in MN]

Thanks for the report.
It sounds so hard, but you are more than half way thru it. Hang in there.
Hope they find what they need to find and can help your DS.

 

[D L and K's Mom]

Ok we are home!!! I am so exausted! DS did great. He kept most of the electrodes on for most of the time. I had to sit next to him all day and just hold them down....this was very tiring as that is all I could do. If I had to go to the bathroom I had to call a nurse etc. The bad news is after 7 days and nights...no seizures...none, not even a teeny tiny one!! Grrrr, I feel like it was a huge waste of time. They have changed the meds to Topamax and we will see how this workd for him. I hated the 7 dyas. The nurses were GREAT. I have to say they were very nice but not a lot of help as I had to dit with him 24-7. I even had to sleep with him in the bed as he pulled the wires off at night. I slept next to him with my arms over his all night. I am sure the video people think I am nuts!!! I laughed as they video and audio is on 24-7 also . The first night we were there the young man who put on the electrodes put them on and then left. DS pulled off 2 a few hours later. I called the nurse adn was told that they would know becasue of the monitor. An hour or so later the young man came down and said he had waited until David was asleep and he knew he was calm...he also knew things were quiet because he could hear that I ahd Sex and The city on the TV....oh my goodness He was very nice. Another day I was playing with a baloon DS had got and the phone rang. It was a voice asking that we please move the obstruction from the video monitor....it was the balloon. It was like being on a reality show with no prize money!!! Oh well, I am hoping that after they read all the data (3 weeks) they have more info for us.

 

[spotdog]

This bring back alot of memories. Try to hang in there and don't be afraid to ask for help from the hospital social work department. There are often volunteers who can talk, play or watch TV with patients so families can have a break.

Keep us updated.

 

[spotdog]

It sounds like my post came just as you got home. Hope you get lots of rest and the new meds help.

 

[D L and K's Mom]

DS is not sleeping....at all....horrible. He is awake for hours and sleeps for 1-2 hours a night. We used to use Melatonin. We were then told to try adding Benydryl (50mg)..this doesnt work at all. We called and begged for something. I hesitate to use anything over the counter because of the new meds. I am so tired and he is awake!! YIKES