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Old 01-10-2003, 11:58 AM   #1
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Question EMU/Video EEG

Personally, I am a bit apprehensive about my EMU stay that is coming up soon. Stopping my medication is worrisome, particularly since it had to be at such a high dose to get my episodes under control. What has been your experience? The technician I talked to today ensured me that they don't want me to have generalized seizures anyway, and that they could stop them if one lasted too long. They also said it was a safe place with highly trained staff and continuous monitoring. But what about the isolation, the boredom, and the seizures? Thanks a lot. You all have been helpful, and this is a great place for support.

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Old 01-11-2003, 05:57 AM   #2
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My 8 year old daughter just had hers last month. It's not bad but I did have a hard time pushing the button to mark the EEG when she was starting to have a seizure as I was too busy trying to tend to her. Where are you going to have it done? Good luck! lazoo

 
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Old 01-11-2003, 08:37 AM   #3
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Hi. I am having it done at Sutter General Hospital in Sacramento. Thanks for responding. I feel a bit better after talking to the monitor nurse, although I am a bit worried about the spehnoidal leads. At least people will be there with me, like my family and friends. So that should help. They told me to hit the button whenever I have an aura and, of course, when I have a seizure (unless I am out, in which case, someone else will have to do it, like you said). Where was your child's EMU stay completed? Did she have many seizures when she was in there? Were any of them generalized? The nurse told me they don't want me to have generalized seizures because it makes the EEG too hard to read. We will see. I am not sure when this will be done. Thanks again.

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Old 01-12-2003, 04:27 PM   #4
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My daughter had hers done at the Medical College of GA in Augusta - they were so nice and compassionate there. She probably had 30 partials there. I was ready to give her the diastat after the first one but they wanted to see several. She also had a PET scan there which shows how the brain uses glucose. Do yours cluster? She has had only one to generalize. I've tried Ativan when they cluster but it doesn't help. The diastat eased her pain (hers make her stomach really hurt and feel like she is going to throw up), but it didn't stop the seizures. They stopped once I put her back on the Keppra. What do you use for these type situations. It's very scary to me. Good luck. lazoo

 
Old 01-12-2003, 05:16 PM   #5
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I am glad your daughter was at a place that had compassionate people. That is a key, especially for children. My daughter had to be in the hospital after she was born for jaundice. And I was dissatisfied with some of the care she received from the nursing staff. They seemed very cold. (Her doctor in the hospital also found she had a ventricular septal defect in her heart. Her new pediatrician thinks it closed up on its own, as it does in 75 percent of the cases. She is growing nicely now and is quite smart, if I do say so myself.) I don't think my seizures cluster like your daughter's do. I really don't have any problem with partial seizures anymore (that was my main problem before they increased my medication) but I have had a couple nocturnal seizures after which I was very sore, tired and confused. The 600 mg dose seems to work well for me, save the auras (apples or a strong detergent smell). I don't know what I would do if they clustered. I assume the EMU has procedures for those kinds of things. I don't know. It's bad enough being so sore the next day but the stomach pain must be horrible. I am sorry your daughter has such pain. The nurse at my epileptologist's office said the doctor doesn't always stop the medicine "cold turkey." Sometimes he cuts it in half the first day, and then half again the second day, etc., until it is gone. However, if it is not up to a safe level when it's time to leave, the EMU staff may keep me beyond the five- to seven-day period. (That is, if they can convince the insurance company.) I just am worried about status seizures. Good luck to both of you.

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[This message has been edited by sekharp (edited 01-12-2003).]
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Old 01-13-2003, 04:52 PM   #6
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Hello! I have been to all the Major hospitals in Ohio and all gave me great care when I went in for my stays! I wasn't on any meds when I went in so I can't ease your mind there. Just know that they really do care and you ARE watched 24 hours! I had a roomie everytime. She had done it several times before (that was my first) and had brought games for us to play! Sounds silly I know, but if you aren't giving them the seizures they want you may have to stay up all night and boy do those games come in handy!!!! http://www.healthboards.com/ubb/dance.gif We even ordered pizza at 1 in the morning. We kept everyone entertained!

Good Luck and hopefully answers will show up for you. Please keep us posted!

Lisa
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Old 01-13-2003, 06:31 PM   #7
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Hey Sekharp, Hope the EMU time goes very well. I can understand the apprehension. One thing I would mention. DO not be suprised if the seizures do not come on too quickly. Seems an old Neurologist joke,"how do you stop seizures? Put the person on VEEG" We found it true for a time. Also found the staff is very good and caring. THey will be there for you to medicate if necessary. Hope they get all the info they need to help you out.

How long are you going in for??
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Old 01-13-2003, 07:21 PM   #8
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Thanks for responding. I love the idea of ordering pizza at 1 a.m. :-) (Though I don't think Sacramento is a big-enough city to have places that deliver that late. We're no New York City.) I think I will go in for five to seven days, depending on what they find and, yes, the seizure activity. Thanks for the tip on the seizures not coming right away. ... That seems to ease my mind a bit. I have found out that it likely will begin Feb. 24, so it will be a while yet. Take care, everyone, and I will be sure to keep you posted.

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Old 01-15-2003, 10:24 AM   #9
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You can check at the EMU. The one we were in has a fridge and microwave for patients and family to use. YOu could have someone bring you in a pizza as long as some one could fix it for you! We also stocked ice cream cups and juice...helped to get him a treat once a day.
make sure you bring things to do, cards, books, magazines, videos, crafts, computer....We were in 8 days and it was a LONG time. (Good thing we had good insurance, the bill was $34,000!!!)
Let us know how you do!!!
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