Epilepsy Talk
Epilepsy Alert: Hospital Horrors | December 9, 2011
Malpractice, negligence, arrogance. The doctor’s oath of “DO NO HARM,” seems to have been forgotten.
Instead of humane and compassionate treatment, hospitals are treating epilepsy patients with little or no regard for their condition.
Here are some chilling examples:
* A Dearborn doctor falsely diagnosed hundreds of kids with epilepsy and was richly compensated ($350,000 extra!) for “bringing business to the hospital.” Many of the children were put on dangerous drugs that made them sleepy and in some cases suicidal.
* A British man was abused by Christian Brothers, and locked in a mental hospital for 33 years as an epileptic.
* A woman in Pittsburgh was handcuffed, shackled and restrained during an epileptic seizure because the police suspected her of being on cocaine.
* A hospital in England admitted that a doctor misdiagnosed epilepsy or over-prescribed drugs for 170 children.
* A woman had her Dilantin level ramped up – due to erroneous blood tests – and she ended up in a different hospital the next day on life support.
* A 5-year-old boy died after being given seven times too much of an anti-epilepsy drug.
It’s interesting that whenever a crime or harm is done to a person with epilepsy, or as soon as the person’s epilepsy becomes known, the accused are veiled in immunity.
Any claims by someone with epilepsy that they have been physically abused are written off or ignored, claiming that the person cannot function properly with their degree of epilepsy, and that additional treatment is necessary to prevent the incident from happening again.
The degree of the outcome is basically irrelevant, from inflicted emotional trauma, to assault and battery, to robbery, kidnapping, rape, and murder. And, to add insult to injury, people with epilepsy experience these atrocities at a much higher frequency, because they are regarded as having something “wrong” with them. The results of the harm will most likely be often written off because the person had epilepsy. Therefore they don’t “count.”
Even the number of witnesses, the degree of evidence, and the presence of law enforcement officials are basically irrelevant. Most people tend to turn their heads and pretend nothing happened. Well-documented cases with complete sets of video, don’t sustain punishment, legal action, correction, change in policy or even change in protocol.
And so the blame goes to the victim. (Are they insinuating that we’re all nuts?)
This resulting denial of “equal protection under the law” is an additional abuse. It’s sad to know, the very “authorities’ who swore to protect, serve and save our lives, can be as deadly as the epileptic seizures we are forced to live with every day.
Elsewhere, this country would call such abuse “crimes against humanity”.
In most states, having a seizure is technically illegal, and while prosecutions are not many, they do happen. When prosecutions happen, many states only allow the insanity defense, which strongly implies that the government itself regards epilepsy as a form of mental illness, in addition to the prejudiced public.
Above are publicly documented stories. The private stories below are as personally traumatizing and horrific to believe, no less prosecute.
* Like the lady who was almost convinced by doctors to pull the plug on her 16-year old daughter’s life support, because they asserted her young life would no longer have any “quality.”
* The patient who came into the ER experiencing non-stop seizures who was considered too loud and unruly, so he was placed by nurses in a room down the hall, where the staff and waiting room patients would be spared the “scene.” Nobody took the time to check on him until 30 minutes later, by which time he needed to be put on a ventilator and subsequently died.
* In Quebec, patients with epilepsy were written off as “crazy” and were imprisoned in a psychiatric hospital, where they were strapped to their beds all night, kept abusively in straitjackets, or left zombie-like from too many drugs.
* “I have woken up in four point restraints. Been injected with medication that caused me to have Grand Mal seizures. I have also been on toxic doses of AEDs, which is part of the reason why I am now so physically ill.”
* “I was put in the Harborview Psychiatry Intensive Care Unit for treatment of my epileptic seizures. Epilepsy? No. Insanity? Yes. Or so they concluded in their wisdom.”
* “I have been denied food, meds, sleep, needed medical care, etc. Whatever happened to healing? Prisons get more attention, but the problem is much worse in hospitals.”
* “I made a good life for myself until I tried to get help from the medical establishment. Once they started ‘taking care of me’ and not allowing me to take care of myself, that’s when everything went out of control and I got so seriously ill, I could no longer work.”
Laws are being broken, rights are being denied, people are suffering, being abused, ignored and dying. Exactly what is the definition of a “hospital?’ A “doctor?” And what does it take to be treated with care like a real, bona fide patient?
Resources:
http://www.simonbaker.me/2/hi/uk_news/england/1682630.stm
http://www.oikos.org/psychabuse.htm
http://www.mlive.com/news/detroit/index.ssf/2010/06/lawsuit_dearborn_doctor_falsel.html
http://my.epilepsy.com/discussion/987472
http://host.madison.com/news/article_b8d8d5e9-c0cb-5eb4-8cb6-de7884405f34.html
http://my.epilepsy.com/node/987537
Tags: abuse, danger, death, Epilepsy, hospitals, malpractice, misdiagnosed, trauma
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DOH!…You have to be kidding, Doctors aren’t like that!..
Comment by mkfarnam — December 9, 2011 @ 7:05 PM
And who would know better?
Comment by Phylis Feiner Johnson — December 9, 2011 @ 9:09 PM
Doctors are just humans & like all other humans, some are good & some are not so good.
Therefore, it’s ONLY humanely natural to see, there are a few CON ARTISTS, few bad apples among millions of every day health professional determined & devoted to heal their patients.
Just like looking for trust-worthy used car dealer or mechanic, in the end patients just have to be very informed & careful in selecting treatment from the right Doctors vs voodoo doctors & con artists.
While QUESTIONING the integrity of your health providers may seem defeating the purpose of the treatment,,, IT’S BUYER BEWARE!!!
Phylis, Thanks for the warning.
Comment by Gerrie — December 11, 2011 @ 1:33 AM
So true. That’s why you have to do your research like anything else.
I’ve seen people spending more time researching a new car purchase than they do a prospective doctor!!!!
Comment by Phylis Feiner Johnson — December 11, 2011 @ 3:59 PM
It does happen!
I had it happen once in an emergency room when I was in status and my parents told me I was put under anesethesia. II did not recognize people for 2 weeks post-ictally. I was very confused. My parents wondered what happened in the emergency room. I had had status before. No one explained anything to my family and they said I was acting like a gorilla, that was new. They never knew what happened. This happened in the ’70s
The second time, I was at the university, the medications were mixed up in my tegretol bottle. I kept asking my friends if they had a head ache or if their heart was beating fast. They gave me blood pressure medicine that look exactly the same. I sued the pharmacy. I went to the ER because I felt sick and found out I had 2 different drug in my container one a blood pressure med. and the other tegretol. Human err that was making my blood pressure to go extremely high. This happened in the ’80s
Comment by Toni Robison — December 9, 2011 @ 8:10 PM
Swell, so you go in with seizures and you then have a heart attack!
Comment by Phylis Feiner Johnson — December 9, 2011 @ 9:12 PM
Actually, when I did almost die 2 years ago, the cascade of seizures was so intense that I DID have a heart attack…all on my very own.
And they induced a coma, so I wouldn’t have another heart attack and die.
In this case it was a good thing. (I’m still here, aren’t I?)
But the coma went on for 5 days and I was on life support. I don’t know if that was so good.
Comment by Phylis Feiner Johnson — December 9, 2011 @ 9:15 PM
Thankfully I haven’t had those kind of horrible experiences. I have been treated at ER’s by some incompetant people though. During one particularly severe seizure, my wife told me the ER nurse was drilling me for answers as to what was wrong with me. She told my wife I was uncooperative! My wife said” Hellooo! He’s having a seizure, get me a supervisor” All worked out. (or so I was told)
It’s ironic, but next month is the first meeting of an Epilepsy support group, I helped put together at that very same Hospital. Maybe we can teach THEM something!
Comment by Charlie — December 10, 2011 @ 2:53 AM
No one going to screw with Toni’s man!
But seriously, I think nurses could use some brush-up training themselves.
Comment by Phylis Feiner Johnson — December 10, 2011 @ 2:50 PM
Once when I was in the hospital after seizures, my neurologist at that time yanked me off all my meds suddenly. Why? He couldn’t figure out what was wrong. No wonder I went into an uncharacteristic manic-depressive episode. I mean, you’d think a neurologist would know not to do that. And could I get that expunged from my medical record? No. It’s no surprise that I changed neurologists, and in doing so I found a superb doctor.
Comment by Maggie — December 10, 2011 @ 5:14 AM
That’s horrid. And ignorant. But at least it led you to find the right doc. So, in a sense, he did you a favor.
Comment by Phylis Feiner Johnson — December 10, 2011 @ 2:51 PM
I’m shocked, but not because of what everyone has reported, but to realize that I am among a not-so-unique group of epilepsy patients. I too have experienced dangerous and weird treatment by past neurologists. I wonder if the question should have been “who hasn’t been mistreated?” Thanks everyone for sharing your stories.
Comment by Tom — December 12, 2011 @ 5:03 AM
There is still too little research into this condition. I was most likely born epileptic but wasn’t diagnosed until well into my twenties – and even after the diagnosis I almost died whilst having a minor operation because I seized and stopped breathing! The surgeon thought I was having an asthma attack (and, to be fair, I’m atopic and so I do also suffer from asthma) and treated me accordingly. I can’t blame him, as he was doing what he thought was the right thing at the time.
Since then I have suffered episodes during dental work and even during an endoscopy exam – which of course had to be abandoned.
I’m one of the very lucky few who has a wonderful medical and neurological team who monitor what different drugs do to me and change/stop them accordingly, and I also have a very perceptive husband who knows from my behaviour that something “isn’t right” even before I do.
People can say that doctors aren’t neglectful and that epileptics aren’t misdiagnosed as schizophrenic or crazy all they like – but it does happen and it’s something that everybody should be aware of.
Comment by Tribble Wife — December 12, 2011 @ 11:58 AM
20 Years undiagnosed. How awful. And ignorant!
Does the anesthesia during the procedures make you seize? Because I always speak to the head anesthesiologist to figure out a solution before death comes knocking at my door. (Or at least voluntarily!)
Happily you have a good medical / neuro team who can safeguard your health and are in your corner.
But what you had to go through to get there!
Comment by Phylis Feiner Johnson — December 12, 2011 @ 3:09 PM
It’s the anaesthesia apparently, yes. I needed oral surgery in October and they had to give me a sedative rather than knock me out.
It’s my maternal grandmother’s fault that my diagnosis came so late; her mother was epileptic but she never told anybody – including my Mum. Mum is epileptic too, but didn’t find out until a few years ago.
Comment by Tribble Wife — December 12, 2011 @ 3:22 PM
Well Tribble, the anesthesia part can be “fixed” or overcome by a knowledge anesthesiologist.
As for the non-disclosure on your grandmother’s part, perhaps it was the terrible stigma associated with epilepsy in those days.
Comment by Phylis Feiner Johnson — December 12, 2011 @ 3:38 PM
We honestly don’t know why my grandmother said nothing about her mother. It was only after my own diagnosis (which came years after my own mother’s and my younger sister’s) when she mentioned anything – so we don’t believe it was anything to do with stigma; it’s more as though my grandmother doesn’t think to mention things like this unless another relative begins to suffer.
Comment by Tribble Wife — December 12, 2011 @ 9:18 PM
I have only been admitted 3 times. First the Air Force. I don’t recall much. It was over 30 yrs Ago.
I know they did a CT Scan. They kept me for 3 weeks & released me the same day my squad graduated from basic training. I feel like I slept those 3 weeks. And was Rudely Awakened that Day. 
They told me the results of my CT Scan showed a weird shadow. They couldn’t figure it out. I did. Or rather my daughter did 13 yrs later. It was a ‘bruise’ caused by a head blow. My first seizure as an adult. They did give me Dilantin, but, didn’t explain that I Had to Keep taking them. 
Or what a seizure entailed. 
I went to a Teaching hospital, Parkland, in Dallas for treatment a yr later. Drs would keep me waiting 10-12 hrs.
Hand me a script. Good bye. See ya in 6 mths. Then, every 2 yrs, hand me a script for a new drug to try. 
10 yrs of ‘hurry up & wait’. Whether for DR or tests. 
14 yrs ago, I was admitted overnight when I felt light-headed & numb/hurt arm while nurse was doing BP. Blood pressure problems. Doc was Clueless as to Why. While signing me out, I asked the Head Nurse if nutrients &/or Phenobarbital could be the cause. He went to his PDR & sure enough, my AED’s side effect. Ignorant Doc!
3rd time was not Ep related. Only cuz due to breathing problems I was scared of Possible seizures & no one at home to supervise me. I stayed 3 days. I was treated properly by all the DRS. Including a Head Neuro. But, I butted heads w/ him later when he told me I needed to get off my meds. After 20 yrs of seizure control. No Way! Side effects be danged. I Cope! I know my system & it’s warning signs. I Listen to my ‘inner self’ I educated myself & found out I Know More than DRS I see & Hospitals I ‘visit’ & Tests I’ve taken, have ever told me. A smile, a frown, a nod & Goodbye. I know I will never forget the trauma of those who Have suffered Physical &/or Mental. Such as My Daughter. I got off ‘lightly’ I think.
Maggie, they yanked her off all meds, too. Hoping to Induce a Seizure. I know I was Shocked when she told me.
Comment by candi — December 12, 2011 @ 12:05 PM
Candi,
I can’t even imagine how painful it must have been to “miss” the graduation of your basic training buds. And know that you’d never be one of them.
And then the punishing treatment of know-it-nothing doctors.
It’s easy to see why you became such a vigilant researcher and such a strong advocate.
Comment by Phylis Feiner Johnson — December 12, 2011 @ 2:31 PM
Phylis, I have shared that part of my History w/ so many PPL. Each Time I do, I feel the sadness & tears. Phylis, I had no ‘buds’ while there. I was, as always, a Loner. It Hurt me to know that they could/would be able to Do something w/ their Lives. A Choice that was at that time, I Felt, Denied me. But, I Moved Forward & Continue to do so. As you Know.
Fact of Life: Life Interferes at Times. 
But, we can All make Changes. 
If Need Be!
Comment by candi — December 12, 2011 @ 2:52 PM
Well, you’re far from a “loner” now…the way you reach out and help people who are confused and in need. I’d say you’re a LEADER!
Comment by Phylis Feiner Johnson — December 12, 2011 @ 3:01 PM
I’m a Loner in Real Life.
I’m a Follower in Cyberspace. 
I follow what every one/any one shares w/ me. Yes, it Leads me to do some ‘homework’. But, I am only following thru per request/question/story. 
HUGS to You for putting into words the Links/Info I share &/or you Learn on your own Journey w/ Knowledge.
Comment by candi — December 12, 2011 @ 4:58 PM
Back at ya!
Comment by Phylis Feiner Johnson — December 12, 2011 @ 7:25 PM
Who was it said ” I follow a Path & where it Leads, no one knows.” ???? I can’t ‘walk a Mile’ in your shoes, but, I can ‘follow’ you on your Journey. And I Enjoy Doing That. Love Ya!
Comment by candi — December 12, 2011 @ 5:15 PM
And we follow YOUR journey, also.
Comment by Phylis Feiner Johnson — December 12, 2011 @ 7:26 PM
This is probably the wrong place to write this, but I’ve been so incredibly tired/exhausted for months, and wondering why. I had blood work again Saturday morning, and my Dilantin level was 11.8, close to the low end of the range, which is 10 (normal range 10-20). Anyone have experience with low Dilantin (phenytoin) levels causing fatigue?
Thanks.
Comment by Maggie — December 12, 2011 @ 8:31 PM
I’m constantly tired and I exhaust easily. Post-seizure I am dizzy and woozy for days, and I absolutely hate it
Comment by Tribble Wife — December 12, 2011 @ 9:09 PM
Hello Tribble Wife,
Do you keep a Daily Journal? Are you taking any Extra supplements? Watching your Diet?
How Long have you been on your meds?
Comment by candi — December 13, 2011 @ 11:08 AM
Hi Candi,
I’m currently only on 0.5mg Clonazepam at night, as we’ve yet to find a mainstay that will work for me. Over the years I’ve been on the following medications with the following side effects:
Tegretol Retard: I had to stop taking this as it turned me into a brainless zombie who didn’t know what they were doing half the time.
Keppra: Psychotic episodes, culminating in beating up my husband and attempting suicide.
Lyrica: Water retention, tendonitis (so horrific that I was actually crippled) and dramatic weight gain (over 70lbs in less than six months).
Topiramate: We thought we’d cracked it with this one, as the weight from the Lyrica fell off, I could walk without my stick again and I didn’t have seizures. Unfortunately it supressed my appetite so drastically that I became anorexic (I’m still fighting that battle, but things have improved).
My husband keeps a journal of seizures and events that I might not remember, and I take vitamin supplements. My husband drives or otherwise accompanies me everywhere in case of emergency.
My condition also affects my bladder control from time to time, so if we’re spending a weekend away from home I’ve taken to using continence pads at night – just in case.
I’ve been on and off meds now for about 15 years, and it’s becoming incredibly frustrating!
Comment by Tribble Wife — December 13, 2011 @ 11:30 AM
Hello Maggie,
I don’t recall what my blood levels were, but, Dilantin was a Nitemare for me. Family memory: I was a walking, talking zombie. Stumbling & mumbling as if Drunk. When I wasn’t sleeping. Which was a Lot! What I’ve learned since then: All our meds are sedatives. Some ppl’s systems just can’t tolerate a med or it’s side effects no matter what the levels are. Most Important: If a drugs side effects are intolerable &/or does not diminish w/in 4-6 weeks after reaching it’s Therapeutic Level, it’s Time to Ask/Demand to ‘try’ another med! I went thru 5 meds. I now have seizure control, but, my system Still requires Naps 20+ yrs Later.
Comment by candi — December 13, 2011 @ 10:50 AM
A Friend of mine posted Ideas for a Good Journal on WebMD.
http://exchanges.webmd.com/Epilepsy-Exchange
Info posted under Tips by Meetz.
I know how you feel. I suffered the med merrygoround for 10+yrs. Same w/ my Daughter. My Sis opted for Seizures rather than meds. Every Doc she saw had a different ‘opinion’ as to Cause of Seizures. From Unknown to PTSD, to Borderline Diabetes, (which was discovered after a HA.) , allergies (airborne) & Finally Diagnosed at age 52 w/ Catamenial Seizures, after a Severe Depression mode. Now on Progesterone & Modified Atkins Diet. Seizure Free 4-5 yrs? My Daughter is on Lyrica. She seems to be doing OK, but, said she woke up w/ fingernail scratches on her face the other morn. She’s been on this med for about 4 mths?? Time will tell. Time & Patience. I Love your Blog.
You are a Good Writer. 
Too! 
Comment by candi — December 13, 2011 @ 12:15 PM
There is a new free website that offers the same clinical articles used by professional neurologists to the general public. It has the most extensive epilepsy coverage of any online resource. Note that the articles are written for physicians and not dumbed down for general consumption, but they are of considerable depth and quite up to date. The site is available here:
http://www.medmerits.com
Comment by Marc — December 12, 2011 @ 8:36 PM
Hi Marc,
Thanks for the Site/Link.
I’ve learned to ‘skim’ over the tech talk & Still understand the articles. 
Problem? Getting Physicians to Read the Material! 
Granted this was said by an Internalist Specialist, but, Realllly ? After describing an odd ‘episode’: “Did you flop around like a Fish? No? Then it wasn’t a seizure.” I suggested he go on-line & Learn about Epilepsy. “I know as much or more than a
So, I cheked out Info. Should I believe what I read? Cuz, he is Wrong Again! 
Time for a New DR! 
HUGS Have a Good Day! Enjoy! 
computer. And you shouldn’t believe what you read on a comp.” The ‘episode’ was considered due to Low Blood Pressure. Which, Granted, had the symptoms of a ‘drop seizure’. I asked him what kinda harm LBP could do. “None. Most PPL would Love to have your Stats.” I do Know BP Fluctuations are a side effect of my
Medication.
Comment by candi — December 13, 2011 @ 11:36 AM
WOW! New is Rite! I cheked the EP Support Group. Just Started this Mth/week?
No one except a moderator. In need of More Moderator wanna-be’s 
Preferably Professionals. HMMM? Good Luck There! Our “Pro’ Doc only lasted for 4 mths, if that, on WebMD. 
I was Glad to see him Go!
I seem to recall some Viewers, but, no questions, comments. Yet! I’ll be keeping an eye on it.
Comment by candi — December 13, 2011 @ 12:24 PM
A hundred thousand thanks! I’ve just added it to my folder.
Here’s some more goodies:
http://www.sciencedaily.com/news/health_medicine/epilepsy/
http://www.medicalnewstoday.com/sections/epilepsy/
http://www.touchneurology.com/related-content/3335/article_custom
Comment by Phylis Feiner Johnson — December 13, 2011 @ 12:03 AM