Hospital monitoring?

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samrhett2
New Member


Date Joined Jan 2006
Total Posts : 5
   Posted 1/13/2006 5:00 PM (GMT -7)   
I am brand new to this forum, but really need to know if this is standard procedure.  I will try to be short and describe my father's condition, to see if you recognize the symptoms and then I have a question.
 
My father had two Gran Mal seizures in 1965.  After evaluation, he was put on Mycelene.  Since then, he has continued to have what I believe Petit Mal seizures.  He used to just start saying Yeah, Uh-huh, over and over for about 8 seconds.  Throughout the years, this happened to him about once a week.  about 10 years ago, the symptoms changed and he started grimmacing, groaning, like he was in pain.  This became more and more frequent.  He has never wanted to talk about this.  I think it was because there was still a stigma attached to epilepsy in the 60's.  Also, his doctor said he did not want to use the particular word, because of the negative perception.  This led my father to believe that it was nothing to be concerned with.  He just called them memory lapses.
 
My mom and I talked to him about 6 months ago and said that he should go to a neurologist because we knew that there was newer medication and they might be able to stop these episodes altogether.  Begrudgingly he went.  The doctor weaned him off the Mycelene and the spells became more frequent.  They did an outpatient monitoring test for 48 hours.  During this time, he had two of these incidents.  My dad wrote down the time and what he was doing when it occurred.
 
The neurologist said that he saw something on the recording, but they were not seizures.  He said it was something like ADD similar to a sneeze reaction.  Next visit, my mom and I went and upon our explanation, he put my dad on Trileptal.  My dad has had no improvement.
 
They are now planning to send him to the Medical University in Charleston for inpatient monitoring.  They said he might stay two days or up to 7.  The doctor said he has to catch 3 incidences before he could go home.
 
Here is my long-winded question.  The doctor stated that my dad would have to have someone in the room with him 24-7 and commit to be there 7 days if necessary.  Is this normal?
 
I have a child and work and my mom is in a wheelchair.  Charleston is 90 minutes away from our house and I can't take care of my mom, my child and be at the hospital at the same time.  We have no one else to go.
 
If they have a camera and monitors on him, why do they want us to notify them when we see him have what we described to them?  Don't they read the tape and watch the video?  What if the person with him has to take a shower, go to the bathroom or sleep?  Do we just hope we don't miss something? Oh well, know one knew, so he will just stay longer?
 
I have never heard of such a thing and it has my family upset.
 
My dad has agreed not to drive for the time being, but my mom can barely drive, so I am doing all I can for them.  The hospital basically said, well, when you can work out your situation, call us to set up an appointment.
 
Ever heard of this?
 
Also, please excuse me if I used wrong words in any of my postings, for I don't mean to be insensitive to anyone who suffers from this condition.  I know people who don't go through what you do, often misunderstand.  I know, I am bi-polar and have people think I am crazy, rather than having a medical condition.
 
Thanks so much for your help! 

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/14/2006 12:37 AM (GMT -7)   
HI.
Did they give you any reason that you would need to be in the room. THat doesn't sound right maybe there was some kind of misunderstanding of something. I would speak with them again and find out. If he is going into a hospital of VEEG monitoring I don't know why you must be there 24-7. Good luck let us know. take care Tracy
 
 


memerelorraine
New Member


Date Joined Jan 2006
Total Posts : 19
   Posted 1/14/2006 4:23 AM (GMT -7)   
I agree with Tracy there is no need that I can see of to be in the room 24-7 for this type of monitoring. I went through the same type of monitoring and my husband was never asked to stay, there was no reason for it. Like you described, cameras are there, hospital staff is there and we are monitored 24-7. I would suggest the same thing to speak to them again and ask more questions.

All my best,

Lorraine
 


samrhett2
New Member


Date Joined Jan 2006
Total Posts : 5
   Posted 1/14/2006 8:54 AM (GMT -7)   

Thank you so much for your replys.  I think I will call the hospital myself and clarify this and some other questions.  I think my mom and dad are afraid to let me call, because when it comes to my parents I get very protective and often get angry and can be sarcastic when I feel they are not being treated right.

 

Thanks again.  I will let you know how it goes.


memerelorraine
New Member


Date Joined Jan 2006
Total Posts : 19
   Posted 1/16/2006 7:33 AM (GMT -7)   
Good Luck and thinking of you.

Lorraine
 


samrhett2
New Member


Date Joined Jan 2006
Total Posts : 5
   Posted 1/24/2006 4:25 PM (GMT -7)   

To add to my original posting, my Dad received a letter from MUSC.  They stated to let them know when we had arranged for care for my mother, at least 7 days off for myself and childcare for my child.  Oh!  let me get right on that!

In addition, the letter said that my dad is not allowed to sleep the night before he is admitted and may be required to stay awake the first night in the hospital.

 

Has anyone heard of this?  Sleep deprivation?  This keeps getting stranger.

They said if no one could stay with him, that they would hire a private nurse at his expense.  Well, thanks!

The person staying in the room is responsible for their own meals.  So now that person leaves the room to go to the bathroom, take a shower, and get food and will not be observing when they are asleep.   Also, when my mom and I are with him, sometimes I notice the episode when she does not and sometimes she notices it when I don't.  The other day he spilled soup.  He later told my mom that he had a seizure and that caused the spill.  She was sitting right next to him and she did not know.  You have to be listening and watching him closely.

The letter still did not explain why the other person has to be present.

Anybody been sleep deprived?  Getting really irritated now.

 

 

 

 


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 1/25/2006 6:47 AM (GMT -7)   

Hi there,

Being from the UK, things may work a little differently but I have heard of people with epilepsy in the UK that have done sleep deprivation. As far as I know, (and I am open to be corrected on this) sleep deprivation is used to try and make the episode happen. This then gives them an idea as to what is going on. (I have heard this is what happens but cannot honestly say I have had it done myself)

I see no reason why you and/or your mother should be responsible for watching him 24-7. There is a medical team on site and they should be watching him for episodes. If they see what they believe to be an episode, all they would need to do is note the time and then play the video back to you when you are next there for confirmation that it is what you were talking about.

Hope this helps and that you get this sorted out soon, Best Wishes

Darren.


 


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/25/2006 1:50 PM (GMT -7)   
I myself had a sleep deprived EEG done. It wasn't much fun trying to stay awake a full day then that night into the next day. But I had a friend hang out with me pretty late into the night or morning (3am). It just puts more stress and strain on the body to be awake so long. Sleep deprivation can stimulate sz activity for some people. For me it did not. But I was not admitted to a hospital, I just went back and forth to the outpatient center. Good luck with everything I hope you can get a speedy dx and treatment. Tracy
 
 


andrew50
Regular Member


Date Joined Dec 2004
Total Posts : 93
   Posted 1/25/2006 2:05 PM (GMT -7)   
I had a sleep deprived EEG when they were still trying to figure out what was wrong with me.  The idea (I think) wasn't to induce a fit, more to monitor your brainwaves when you're asleep.  The deprivation beforehand was just to ensure you could get to sleep when they wanted you to. They didn't keep me in hospital the night before and I'm not sure why they insist on taking your dad in, Samrhett. Perhaps they decided they couldn't rely on patients really staying awake alone.  It was a sadly misplaced trust in my case.
 
Regards,
 
Andrew

samrhett2
New Member


Date Joined Jan 2006
Total Posts : 5
   Posted 1/26/2006 9:40 PM (GMT -7)   
Thanks to everyone. We still have no way to even schedule with the hospital, since we have no one to sit with him. I can't take care of my mom, my son and work and go with him too! Seems impossible right now, but thanks for your replies and experiences.

samrhett2
New Member


Date Joined Jan 2006
Total Posts : 5
   Posted 1/28/2006 8:07 AM (GMT -7)   

I am in the US.  The nuerologist here did an outpatient 48 hour monitoring.  My dad had three episodes during the test.  He realized when he had them and wrote down the times.  When the doctor examined them he said that he saw something, but not seizures.  My dad asked him what they were and he said, "Well, there isn't really a name for it but it is kind of like a sneeze."  He also said it was similar to ADD. 

 

I know a little about ADD and he does not have that.  It was not until my mom and I went in and talked to the doctor that he became more concerned.

I think he should have the outpatient test again with the doctor now believing that this is something more than similar to a sneeze?????????

My dad has been stalling on calling the hospital and the doctor because we thought that my mom was going to need surgery for carpal tunnel, but now they are going to wait and see.  Let alone, that we still cannot figure out how we are going to handle the arrangements.

Thanks again for all of everyone's help.  I will let you know what happens.

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