SUDEP / Epilepsy Kills / Death by Epilepsy - Info Site Link

[brain]

I finally found the bookmark from PUBMED,
for those who may wander about looking for information
in regards to:

Epilepsy Kills

Death by Epilepsy

or

SUDEP


Incidence and risk factors in sudden unexpected death in epilepsy: a prospective cohort study.

This abstract provides incidence and risk factors
and detailed information as well as including:
Related Links

* Sudden unexpected death in epilepsy: a review of incidence and risk factors. [Epilepsia. 2005]
* Risk factors for sudden unexpected death in epilepsy: a case-control study. [Lancet. 1999]
* Risk factors for sudden unexpected death in epilepsy: a controlled prospective study based on coroners cases. [Seizure. 2003]
* Antiepileptic drug therapy and its management in sudden unexpected death in epilepsy: a case-control study. [Epilepsia. 2001]
* Comparison of antiepileptic drug levels in sudden unexpected deaths in epilepsy with deaths from other causes. [Epilepsia. 1999]

All available at the above website.

 

[Bernard]

From the abstract:

Occurrence of tonic-clonic seizures, treatment with more than two anticonvulsant medications, and full-scale IQ less than 70 were independent risk factors for SUDEP.

 

[Duvexy]

I worry alot about SUDEP I read about it awhile back and I am currently educating my family about it just in case. Speaking of which, could that be avoided if the person was sleeping with a different pillow?

 

[tinasmom]

Duvexy -
I do have a safety pillow for my granddaughter. I think the pillow helps to reduce the risk of SUDEP. We also have a video baby monitor for her. Her mother died from SUDEP so I try to take every precaution.

 

[Bernard]

... could that be avoided if the person was sleeping with a different pillow?

A good pillow might help avoid complications from a seizure - like suffocation, but that's not SUDEP as far as I understand it. With SUDEP, the seizure itself causes death.

 

[CJR]

My Newbie is showing again!!! I haven't heard of a safety pillow before now? What, Who, Where??? So many questions, so little language skills! I guess what I'm trying to say is...Any information would be appreciated. Thanks.

 

[tinasmom]

http://www.sleep-safe.co.uk/index.htm

This is the place that I got Nicole's safety pillow from.

 

[haird18]

I've learned more ways of avoiding sudep

To all,
an Idea of avoiding sudep isrember these few things that I have learned .
1. Alway try to sleep on your back
2. avoid sleeping with a bunch of pillows or stuffed animals.
3. Remember to always take medications on time
4. never eat late at night
5. always have a regular bedtime and waking time
6. any changes always report to dr.
7. keep sharp objects away from bed
JUST BE SAFE AND CAREFUL!!!!!!!onder:onder:onder:

 

[RobinN]

Those are really good suggestions David.
I think those are important for many people, not just those with E.

 

[haird18]

I've Almost Died Because Of Sudep!!!!!

Hey "CWE" friends,
I had almost died from this many times but luckily I had a ERS or emegency response pendant that saved my life. In another I was asleep in my room and my roommate had to help. Also when I was little it happened so many times because my seizures were at night. Then it has happened many timws in the hospital on epilespy monitoring unit in Dallas. So I have to be careful when I sleep because I could easily die this and scares me everyday. So I thank God I am alive!!:agree::brain::e:onder:
God bless you all,
David Hair

P.S.
Please do me one thing just take care of yourselves with seizures!!!!!

 

[RobinN]

that is very nice of you David to be concerned with so many others when you are dealing with so much yourself.
Your suggestions are very good, as I don't think about this much. Luckily Rebecca has only had one seizure at night that I know of. Being a teen, she now sleeps alone with her door closed. I might have to make changes in that if things change.

Luckily her seizures are reducing in number lately.

You have been kept alive for some reason David, and perhaps it is to teach all of us something. Thanks for sharing our story.

 

[Zoe]

I found a safety pillow a necessity when I was having seizures. SUDEP, means Sudden Unexplained Death in Epilepsy-basically, that someone dies during a seizure. I had convulsions during sleep and nearly died a number of times from them. They did not stop until I quit taking AEDs. One of the AEDs I took was tegretol and I think the tegretol was like the reason my seizures could not be controlled with drugs-the drug was destabilizing my heart.
http://doublecheckmd.com/EffectsDetail.do?dname=Tegretol XR&sid=7840&eid=2164
http://www.crazymeds.us/anticonvulsantsSUDEP.shtml

 

[dfwtexas]

Being newly diagnosed, I have never heard of this. I really want to thank you all for the information. I really didn't get a lot of information from the doctor, but he did warn me that if I didn't take my Keppra and had multiple seizures that dying from the seizures could be a real threat.
When I tried surfing the net for information, it was more confusing than helpful. Ya'll are a wonderful group that have really helped me to understand what my brain is going thru. Thank you, God Bless you all!

 

[bbbecki78]

wow, you must hav e a guardian angel watching over you

 

[Cint]

this kind of news infuriates me, no excuse for it!

Monitoring Mistake Leads To Hospital Death

Written by Brian Maass

WESTMINSTER, Colo. (CBS4)
A 64-year-old Westminster grandfather with epilepsy died after the University of Colorado Hospital left him unmonitored for more than an hour during a test in which they had taken him off of nearly all his medications.

The hospital is accepting responsibility for the lack of monitoring that apparently contributed to the death of Charles Gray, who had entered the facility in good condition, hoping to improve his health, only to end up dead four days later.

A CBS4 investigation found Gray was left unattended in the hospital for 65 minutes last October, a gap his family believes led to his death.

"I have no doubts my dad would be here today if they monitored him the way they said they would," said Teresa Gray, one of Charles Gray's three children.

Gray, a Westminster resident and grandfather, had suffered from epileptic seizures throughout his life. Those seizures prevented him from driving, working or supporting his wife.

"He wanted to give, not receive," said his younger brother, Steve Gray.

Gray entered University Hospital's Epilepsy Monitoring Unit on Oct. 15 so Doctors could study his brain, learn more about what was causing his seizures and possibly operate on him in the future to alleviate his symptoms.

He was placed in a room with a video camera whose live video feed went to a nearby monitoring station. Gray was one of eight patients being monitored.

Dr. Steven Ringel of University Hospital said that in the last 20 years, about 3,000 patients had been through the epilepsy monitoring program without a serious incident.

The hospital assured Gray he would be cared for and observed around the clock. They gave him a form letter that said, "There will also be a neuro-diagnostic technologist in the monitoring booth at all times to maintain the equipment and gather data."

"He was very confident this would go well, that he would be monitored 24/7 and he had given his full trust and laid himself open to that hospital," Gray's brother Steve told CBS4.

The around-the-clock monitoring was crucial as doctors weaned Gray off his epilepsy medications to intentionally induce seizures so they could better understand what was causing his medical problems.

"An epileptic when in seizure mode needs someone with them," said Teresa Gray. "And we all had complete trust in the hospital that they were going to care for him and watch him."

But on the fourth night of his stay, hospital records show the technologist who had been monitoring the video feed from Gray's room left their post at 11:50 p.m. to get something to eat and check on two other patients. Exactly 28 minutes later, Gray, who had been asleep, suffered one of the seizures doctors were trying to induce.

But there was no one watching, no one there to help. Hospital videotape of Gray provided to CBS4 shows the seizure caused Gray's face to press into his pillow, apparently cutting off his oxygen supply. He stopped breathing a few minutes later.

According to hospital records, it would be another 37 minutes before the technologist returned and found Gray unresponsive. Efforts to resuscitate him were unsuccessful.

The Adams County Coroner listed his cause of death as "seizure."

The hospital says its protocol at the time allowed staff members to leave the monitoring station unattended for short times to check on other patients, get food or take a break.

Gray's family was stunned to learn he was not being monitored around the clock, as the hospital had promised.

"My family put their trust and faith in University Hospital to deliver what they said they would and they chose not to," said Steve Gray. "They chose not to deliver on the promises they made to my brother to insure his health and safety through this process."

Family lawyer Kyle Bachus said the hospital's protocol defied logic.

"Common sense would tell you if you are going to take them off meds, and you're going to cause severe seizures to occur, somebody has to be there to help."

Dr. Steven Ringel said the hospital was "troubled by this" and has made changes "to increase safety of the hospital so something like this never happens again."

Ringel said as a result of Gray's death, the monitoring station is now constantly staffed. If a technologist needs to leave, someone else takes over so patients are always being watched.

Ringel said there will no longer be any gaps in monitoring of patients in the epilepsy unit. Additionally, he said a system has been implemented so that if a patient's breathing decreases, an alarm goes off, summoning help.

"He didn't die in vain," said Ringel. "We're going to make changes to prevent this from happening to someone else."

Ringel acknowledged that if someone had been monitoring Gray on the morning of his death, there was a "greater likelihood" he would have survived the seizure. "We do feel responsible for it," said Ringel.

The man's family is considering filing a lawsuit against the hospital, but since University Hospital is a government facility, it is covered by the Colorado Government Immunity Act and the most it could be held liable for is $150,000.

Family members say this isn't about money, but about holding the hospital accountable for its actions.

"It doesn't seem fair. It doesn't seem right," said Teresa Gray.

(© MMVIII CBS Television Stations, Inc. All Rights Reserved.





Cindy

 

[joey]

To all,
an Idea of avoiding Sudden Unexplained Death in Epilepsy isrember these few things that I have learned .
1. Alway try to sleep on your back
2. avoid sleeping with a bunch of pillows or stuffed animals.
3. Remember to always take medications on time
4. never eat late at night
5. always have a regular bedtime and waking time
6. any changes always report to dr.
7. keep sharp objects away from bed
JUST BE SAFE AND CAREFUL!!!!!!!



great suggestions, i currently do one of them. ill start being more careful.

 

[BuckeyeFan]

Ringel acknowledged that if someone had been monitoring Gray on the morning of his death, there was a "greater likelihood" he would have survived the seizure. "We do feel responsible for it," said Ringel.

The BIGGEST understatement of the year.

The man's family is considering filing a lawsuit against the hospital, but since University Hospital is a government facility, it is covered by the Colorado Government Immunity Act and the most it could be held liable for is $150,000.

Lawsuit?? Heck, some states would be looking into criminal negligence charges in this case. I don't blame the tech as much as the administration who set the policy.

$150,000 doesn't match even one of the salaries responsible for this tragedy. Careers should be finished over this incident.

 

[BuckeyeFan]

4. never eat late at night

Thanks Joey, I had never heard this one before. I will definitely look into that further as I am a late night snacker (big time).

 

[Trinity]

A good pillow might help avoid complications from a seizure - like suffocation, but that's not SUDEP as far as I understand it. With SUDEP, the seizure itself causes death.

Epilepsy Action (Australia) http://www.epilepsy.org.au/SUDEP.asp defines SUDEP as "the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomical cause for death". It also says that "The death was not the direct result of a seizure or status epilepticus" and that "evidence of a recent seizure does not exclude the diagnosis of SUDEP as long as death did not occur during the seizure."

So from that I gather that SUDEP is not the direct result of a seizure as a seizure does not have to have occured near to the time of death. Also death during a seizure is not SUDEP by that definition.

 

[ziggidypoo]

Re: EATING LATE

GERD - gastro- esophageal reflux disease

Not really an E topic.

However, if you eat late, go to bed, and you accidentally spit up into your upper esophagus and food, it is easily aspirated - goes down the wrong pipe and can be dangerous.

I have to sleep w/ mouth guard (I grind my teeth in my sleep); CPAP/O2 machines for Sleep Apnea. Plus, in the bed an additional fan to assist with noise control and air to breathe. If sleeping on my back, I have my hospital bed head elevated (which would be = to lots of pillows) and feet raised for peripheral (lower leg) circulation.

However, from infancy, I have been a belly sleeper, now kinda half way, or half cocked position, w/ face and belly turned one way, kinda a weird twisted position - a respiratory therapist saw me once in a hospital and said that position allows for free air flow.

I like icy-cold air to breathe - helps - w/2 heavy comforters to keep my body warm. Weird, but works for me - to each his/her own.

The machinery for kinda respirator type breathing, I can actually be totally under the covers and get the air/O2 just fine.

During the night, my kidneys work best when I am asleep, so most nights I am up and down - some trips I think I walk in my sleep.

I sleep better in the daytime with the tv going, weird, I know.

AND, my cat "Popsie" ( ziggidypoo when she is running wild) will sleep on my highest level however I sleep, chest, belly, back, leg. She is my protector, etc.

We got her abandoned and eyes still shut, I'm her Mommy.

Anyway, for general purposes, it is not wise to eat late - too easy to regurgitate and aspirate and die or get pneumonia later - especially during a night seizure.

*****************************
"Live and let live"
http://www.myspace.com/ziggidypoo
"God bless you now and always, AMEN"
:rose:
******************************