Epilepsy Talk
Who’s at Fault? | March 28, 2024
Instead of humane and compassionate treatment, doctors, hospitals and the legal system 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, stating 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 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, everyday.
Elsewhere, this country would call such abuse as 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 “doctor”? A “hospital”? Or “legal rights”?
And what does it take for someone with epilepsy to be treated with care like a real, bona fide patient?
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Epilepsy Talk 
Interesting bit of data to reflect on why we might be better off labeled mentally ill — Bagley, C. Social prejudice and the adjustment of people with epilepsy. Epilepsia 13, 33-45 (1972).
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Comment by Jeffrey Lee Hatcher — May 10, 2024 @ 12:24 PM
THat’s a rather dark way of looking at things. 😦
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Comment by Phylis Feiner Johnson — May 10, 2024 @ 12:44 PM
That is just horribly disturbing. I am so thankful that my mother was able to choose the doctors that knew what was best for me when I was younger -young adult.
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Comment by toetagontheslab — May 10, 2024 @ 1:59 PM
It’s also a good thing you had a smart mother!
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Comment by Phylis Feiner Johnson — May 10, 2024 @ 2:02 PM
Great Grandma, Grandma, anut & mom 3 generations of nurses in my family who watched and helped mom get me through life 🙏🏻 I was blessed.
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Comment by toetagontheslab — May 10, 2024 @ 2:23 PM
My now old ‘neuro’ wanted to send me to a ‘clinic’ and deliberately cause me to have a seizure so she could hopefully find out where it was located and what was causing it. Just what I wanted to do: have a seizure that might kill me and lay in a bed with electrodes hooked up to my skull like I was some sort of Frankenstein monster. I was doing fine, no problems. Full dose of meds too: Kepra, Gabapentin and Lamotrigine. To all of a sudden take me off of that stuff would surely kill me. Even gradually would have been bad. I ought to know better than she did because I was the one having seizures in the first place. Too bad that all these people who seem to have a regressive attitude towards the condition can’t undergo some sort of virtual reality affair where they can experience it for themselves. Even relatives act like I’m some sort of freak.
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Comment by mill8char — May 12, 2024 @ 2:20 AM
Being in an Epilepsy Monitoring Unit with your meds removed is an accurate way of determining where your seizures are coming from and often, the severity of the seizures themselves.
An EMU evaluation plays a crucial role in a patient’s diagnosis and management with seizures and epilepsy. It is a specialized inpatient unit designed to evaluate, diagnose, and treat seizures, using state-of-the-art continuous video-electroencephalogram (EEG) monitoring technology.
Think of it as a diagnostic tool. Not something to deprive you of your meds.
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Comment by Phylis Feiner Johnson — May 12, 2024 @ 1:27 PM
Wow! You know a lot more about it than I do. My neuro didn’t tell me anything like that. Explained nothing to me. I’ve been doing well for years. Last seizure 2013. Why go through that unless there is no other choice? Only real change for me is that I won’t do any long drives. Just to work and around the house. Work is 15 miles. Around the house maybe 2 miles at the most. I haven’t gone anywhere for all these years. Just play it safe. Have to think of other people too. Very frustrating, but I’ve become used to it.
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Comment by mill8char — May 13, 2024 @ 2:03 AM
Good for you being so aware of other people. Imagine what would happen if you got into an accident and someone was injured.
No one knows everything. Especially neurologists.
The brain is an intensely complicated organ and they’re not gods. (At least I don’t think so, although others may differ!)
On the other hand, it’s unfortunate you’re so restricted.
Do you work? Would you like to work?
If so, this article may help:
11 Companies Hiring for Jobs You Can Do at Home
https://epilepsytalk.com/2018/12/12/11-companies-hiring-for-jobs-you-can-do-at-home/
Good luck. You sound like a fine man.
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Comment by Phylis Feiner Johnson — May 13, 2024 @ 9:26 AM
And just what is the foundation doing? Nothing! Just as in your article u tell the bad and then do nothing! I have seen how paramedics handle someone having a seizure and they don’t have a clue only go to hospital! I still blame people like u and the do called Epilepsy Foundation u people do absolutely nothing! Shame on u!
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Comment by Glenda Bowen — May 13, 2024 @ 8:50 PM
Glenda, I can understand your anger and frustration. The Epilepsy Foundation is NOT going to cure epilepsy. At the most, they can lobby for funds for research and development (like medical marijuana). They can advocate and educate folks that are clueless like public workers, medical personnel, teachers, etc. They do have enormously helpful support groups. Perhaps before complaining, you could start one of your own. From personal experience, I know they’re very helpful.
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Comment by Phylis Feiner Johnson — May 14, 2024 @ 9:32 AM