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Old 12-31-2003, 08:07 PM   #1
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Question Long-term EEG monitoring in-hospital

In two weeks I have to take my son to Boston Children's for two nights of continuous video EEG. I do have some questions.

1. How do the kids respond to this and being connected to the wires for 24-48 hours?

2. What's it like being in a big teaching hospital? Are we going to feel like bugs under a microscope?

3. Do they withhold meds in order to provoke a seizure or hope to catch what's going on even with meds?

4. Am I going to get any sleep?

5. How do you keep an ACTIVE child from going batty when they are limited to being in certain spaces?

6. Has anyone done this at Children's?

Thanks,
Elaine

 
Old 12-31-2003, 11:52 PM   #2
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Re: Long-term EEG monitoring in-hospital

Hi Dave,

What I know so far is that we will have a private room. Since my son isn't three yet, I will be with him all the time. (Call me Mother Bear ) I was told the doctors will come on rounds every day. That could be intimidating, but I might use the opportunity to ask questions. I guess we'll be watching LOTS of Bob the Builder. Yikes!

Thanks,
Elaine

 
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Old 01-01-2004, 06:25 PM   #3
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Re: Long-term EEG monitoring in-hospital

Elaine:

My daughter (17) just had long term EEG monitoring in mid December. We were at Emory University Hospital in Atlanta, which is a teaching facility too. We received excellent care from everyone. I'm sure your son has had previous EEG's...but the amount of electrodes put on for extended video monitoring is quite a bit more. I think 28-30 total. Prep time for that was pretty long. They reduced her meds the very first day. If your son is having the same kind of monitoring my daugther had, you'll have to be responsible for alot of things. There will be a button to push when a seizure starts so the EEG techs know what section to analyize instead of viewing the whole 24 hours! You're suppose to ask a question to your son at the beginning of the seizure and then the nurse will ask the same question to see if they remember anything prior to the seizure. Of course, you'll have to push the button for the nurse to come in too. And stay out of the way of the camera!! My daughter was on a 15 foot lead..which means she could go to the bathroom and actually stand in the hallway a little bit to break the boredom. We thought we were smart and brought a laptop with some DVD's, but found out we could only plug it into the bathroom outlet because it interferred with her monitoring! Most hospitals will have VCR's to use, especially when children are involved. As far as sleep, we had a pull out chair for me to sleep on. But I found out it was too low and I couldn't see her if she had a simple partial seizures. I opted for the reclining chair that sits much higher. As far as sleep, you won't get much. The nurses don't come in as often in the nighttime to do the blood pressure, temp thing. We had one sleep deprived night (up until 4:00 AM, then sleep until 6:00 AM). She had her grand mals after that, so we didn't have to do more than 1 night of that. We found out to...bring some snacks! Unless your son is on some kind of diet restrictions, this helps take care of the hunger after the hospital food! Emory provided a meal for me, if I wanted to pay for it. I usually opted for a quick run downstairs to get a sandwich or for my husband to bring us food!

I hope this is helpful for you. Does your son have seizures often?

 
Old 01-01-2004, 07:12 PM   #4
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Re: Long-term EEG monitoring in-hospital

Thank you. They have not given me much information yet. My son has had 14 seizures now since the end of November. He usually is out when they happen. He'll get very cranky, crawl into my lap, or lay down, and go to sleep which is when they start. The one EEG he's had was sleep-deprived and normal, so I'm hoping this test will be helpful in figuring out what is going on.

Do I have to stay awake all night watching him? It's almost a 90-mile drive home. If I don't sleep, we won't get home. Yikes!

I do appreciate your telling me what to expect. I wish we didn't have to deal with this. I was in huge denial and this is making it all to real, but I have no choice. The folks who deal with the kids at Children's are wonderful, so I'm not worried about that. I was told there is a kitchen on the floor where I am welcome to go and eat if I'm hungry.

This is helpful. Thank you. Was the monitoring helpful for your daughter?

Elaine

 
Old 01-01-2004, 07:33 PM   #5
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Re: Long-term EEG monitoring in-hospital

Quote:
Originally Posted by mm9221
Thank you. They have not given me much information yet. My son has had 14 seizures now since the end of November. He usually is out when they happen. He'll get very cranky, crawl into my lap, or lay down, and go to sleep which is when they start. The one EEG he's had was sleep-deprived and normal, so I'm hoping this test will be helpful in figuring out what is going on.

Do I have to stay awake all night watching him? It's almost a 90-mile drive home. If I don't sleep, we won't get home. Yikes!

I do appreciate your telling me what to expect. I wish we didn't have to deal with this. I was in huge denial and this is making it all to real, but I have no choice. The folks who deal with the kids at Children's are wonderful, so I'm not worried about that. I was told there is a kitchen on the floor where I am welcome to go and eat if I'm hungry.

This is helpful. Thank you. Was the monitoring helpful for your daughter?

Elaine
this post has really answered some of my questions also...my 4yr old daughter is going to be admitted into the hospital in 2and a half weeks for a video eeg also.....and i was wondering the same questions...thank you all they said it could be 2days we would be there or could be longer they aren't sure yet....she is on 2 different meds right now and they don't seem to be working anymore...and she has poor muscle tone..that really scares me.but i know everything will be ok...thank you all again.....

 
Old 01-02-2004, 06:02 AM   #6
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Re: Long-term EEG monitoring in-hospital

I don't know why Chris started having seizures to begin with. His muscle tone is poor, but seems to be getting worse. That is one of those things we are keeping an eye on. Since we'll be doing monitoring around the same time, we will have to compare notes if that's okay with you. I hope you find out the information you need for your daughter.

Elaine
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Old 01-02-2004, 06:08 AM   #7
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Re: Long-term EEG monitoring in-hospital

Quote:
Originally Posted by mm9221
In two weeks I have to take my son to Boston Children's for two nights of continuous video EEG. I do have some questions.

1. How do the kids respond to this and being connected to the wires for 24-48 hours?

Take a beanie (stocking cap) to put over the tape. Get him use to wearing it before going in. We used a Santa his last time in (Dec 19 - 20) This helps keep them from pulling at the wires so bad.

2. What's it like being in a big teaching hospital? Are we going to feel like bugs under a microscope?

Know that everything that goes on in the room is being videoed. I always feel this way because of that. But I got over it real quick...

3. Do they withhold meds in order to provoke a seizure or hope to catch what's going on even with meds?

Each Dr is different. Jake has never had meds withheld for an EEG. But, there are some on the board here who have had that happen. Call and ask your Dr ahead of time.

4. Am I going to get any sleep?

Depends on how well you sleep with a light on (It has to remain on all night to be able to see the child) and people walking just outside your door. Take your own pillow!! Remember you are being videoed as well as your child, so my PJs are sweat paints and a tee shirt.

5. How do you keep an ACTIVE child from going batty when they are limited to being in certain spaces?

Jake's last one wasn't as bad as I thought it was going to be. It was his first one since he learned how to walk. Take his favorite videos, books and toys. You should be able to let him out of bed and if it's like the wiring at Tampa Childrens you will have about 20 - 30 feet of cable or so to get around. You are also allowed breaks. Jake was allowed 3 15 minute breaks every 24 hours. You can go for walks, to the toy room, etc

6. Has anyone done this at Children's?
No, we're in the Tampa Bay area...

Thanks,
Elaine
Some other things to think about that may make it easier on both of you...

I don't think the hospital gawns keep kids warm enough... So we take Jake his own PJs. They can't go on over the head however - we use the blanket sleepers that zip up the front.

You didn't mention an MRI. If you have one scheduled for the same visit you may want to see about doing it first and having your children wired while they are still out. We did this last time and it was so much easier on all of us.

Our hospital has a frig in the visitors lounge that we can keep snack foods in. I always take a Sharpie marker to put his name and the date on the food. So, when they pass out lunch I always get extra milk, juice and fruit cups, put his name on it and tuck it back for later. I also take yogurt. This way I don't wait until he's fussing and have to ask the nurse for something. I just go get it and take care of business for ourselves. The staff can be very busy at times and you might have to wait a bit other wise.

If your little guy wont let someone take his blood presure on his arm, it can be done through his PJs around the lower part of the leg with good results.

Hope this helps. I wish we could share picutes on this site. We took tons this last time in. At first we didn't because we didn't want to think that this was really happening to our child. BUT - this is our lives - his life - it's part of who he is. So, we took lots and will each time we go back -

Elaine, the hardest part for me was admiting to myself that this was going on. It wasn't someone else... it was my baby. I had never had a "sick" child or spent time in a childrens hospital! It was the strangest feeling to see the purple elevator doors close and open again in such a differnent world (the neuro ward).

The ped neuro ward can be a strange place. We have met parents who's 2 yr old seized so bad that she had never held up her own head. We have met a mother whos son started seizing at birth, before they had even cut his cord. It's hard to see these things - but, it made me feel less alone in what we were dealing with...

Good luck ladies... Oh... we don't have them clean up Jake when they take the wires off. We do this with baby oil and a comb at home - we live 15 minutes from the hospital....

You are all in my thoughts and prayers...

Love and light,

Lisa and kids

 
Old 01-02-2004, 07:30 AM   #8
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Re: Long-term EEG monitoring in-hospital

I read some of the other responses too..there were alot of things to remember and I think alot of it was covered. We were at Emory for 5 days with my daugther. By day 3 she was having simple partial seizures and on day 4 the grand mal that showed what they needed to see. We originally went to Emory to see if she would be a candidate for temporal lobe surgery (thinking that's where the seizures were coming from after her last abnormal EEG), but after the more intense monitoring, they found the seizures were coming from every lobe in her brain. Unfortunately, not the news we wanted to hear. We will continue on the meds (which always made me wonder too..she was still having seizures while totally doped up on different meds), but it showed us that she would have seizures without the meds and who knows how many she would have! She was on trileptal for almost 2 years when we started seeing a new neurologist. He started to wean her (not his drug of choice for seizures) off and put her on topomax. We came to find out at Emory that tripleptal can CAUSE seizures in some epileptics, depending on which portion of the brain is generating the seizures. I thought that was pretty interesting, considering when she first started taking trileptal in 2001, she had several seizures in a two week period.

Anyway, we didn't get the news we wanted, but we did get some answers to some other things. It might be a tough week for you, but it will help with many different things.

You will get some sleep, it's not like you have to watch them all night. What I did was to put my hand on my daugther's bed near her leg, so if she had any major activity I would at least feel it enough to wake up.

I kept on thinking here we are after almost 3 years of wishing my daughter not to have anymore seizures, to "please hurry up and have a seizure so we can go home!" Best of luck to you and your family, Elaine. I hope you get some answers.

 
Old 01-02-2004, 06:43 PM   #9
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Re: Long-term EEG monitoring in-hospital

Quote:
Originally Posted by mm9221
I don't know why Chris started having seizures to begin with. His muscle tone is poor, but seems to be getting worse. That is one of those things we are keeping an eye on. Since we'll be doing monitoring around the same time, we will have to compare notes if that's okay with you. I hope you find out the information you need for your daughter.

Elaine
thank you for your response..i really appreciate it..and yes it is ok with me to compare notes since we both have similar experiences...hope all is well with your son....and i will keep you in my thoughts ...when i know anything i will post it to you on this board..take care and talk to you soon......p.s. does your son have major temper tantrums that last about 5minutes and then he is fine......my daughter does that and her new neuro. said he wasn't surprised especially with the kind of seizures she is having..and her meds don't help either....i was just curious if anyone experienced this also....thank you again and i will keep you in my thoughts and keep you updated..talk to you soon....

 
Old 01-03-2004, 11:16 AM   #10
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Re: Long-term EEG monitoring in-hospital

I don't want Chris to have more seizures, but it would be to his advantage for them to happen while we are at the hospital. His moods go south when he's going to have a seizure. He gets very cranky and screams. Even afterwards, he's moody for most of the rest of the day. He's also very "busy." Chris' neurologist has said to me that he thinks he might be treating him for ADHD in the future.

I'll keep all of you in my thoughts. This is not a road I ever thought I would walk.

Elaine
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Old 01-03-2004, 06:27 PM   #11
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Re: Long-term EEG monitoring in-hospital

Best of luck to you and Chris. You'll be in my prayers. Keep us updated on the progress. I hope you some answers soon.

Nan

 
Old 01-03-2004, 09:20 PM   #12
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Re: Long-term EEG monitoring in-hospital

Thank you Nan. It's been a long time since I was on a board like this where people are open and supportive of each other.

Elaine
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