Epilepsy Talk

Who’s at Fault? | December 16, 2016

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 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, 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?

Another article of interest:

Your Hospital Rights… https://epilepsytalk.com/2010/09/28/your-hospital-rights/

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  1. Phylis,, It’s sad but true, the stories you made us all living with seizures aware of. I know as a kid with seizures, when I started going to the neurologists, I was like trying to talk to them myself, was like trying to talk to a rattlesnake when THEY set the rules, and did not allow me to say what I knew then seemed to cause my petit mals to happen back then. Well today, it’s GRAND MALS, and again trying to talk with any neurologist, to get them to UNDERSTAND ME,, is like living in 1975, as a teenager, to doctors who wont listen or let it go in 1 ear & out the other, as I hear them say,,, I UNDERSTAND,, which that to me is BS. So I agree, as they ALL need to be held accountable & responsible,, for ALL & EVERY treatment plan they do on us that makes conditions worse. Craig Davis


    Comment by craig davis — December 16, 2016 @ 5:00 PM

  2. When I got my first dpt shot I Got tem. of 109, comb, and one brian damage. You would think they find out that happen but they didn,t gave me full douse again same thing as the the time.thrid time give it to me in quarter,s, I did fine an I was told I had epilepey. Now my doctor,s are died I never meet them.


    Comment by michele metzger — December 17, 2016 @ 12:36 AM

  3. Good thing you never met those doctors!

    Do you think the fevers brought on the seizures? Or that they caused brain damage?


    Comment by Phylis Feiner Johnson — December 17, 2016 @ 8:28 AM

  4. brain damage.


    Comment by michele metzger — December 17, 2016 @ 10:28 AM

  5. My story has some of these details. I was a working person until the medical establishment got started on me. Like others, when seizures began @ almost 25 yrs of age, I was sure drs knew best and followed their instructions. As time passed, I became a dual professional, one of those being and LPN. During that time, though, I married a man who had been an airborne medic in NAM and was outstanding in his knowledge and help toward others. Across 30 years of seizures, having come to the point where I was blacking out abruptly in some very dangerous situations for myself and now my son, being widowed, having been on all the AEDs, some more than once or twice, being told by more than one neurologist that the surgery was hope; I had that done which, has added to the fear of monitoring; much less tracing the root cause by several drs. And since then, it has been confirmed that the drugs have been, if not THE cause of the seizures; they have been part, that I am pharmaceutic ally sensitive, as the dr put it.

    When I questioned, pre-surgically about working, I was told, “OH! you’ll just go on disability !” by the RN with a cheery attitude. I was an artisan painter and wall-paper hanger and an LPN.


    Comment by Judy Browne — December 18, 2016 @ 5:42 PM

  6. So the surgery did NOT help and you remain drug resistant.

    What a failure. What kind of surgery did you have?

    Have you tried any other alternatives?

    Epilepsy And Complementary Medicine


    Are you able to work at any of your talented chosen fields?


    Comment by Phylis Feiner Johnson — December 19, 2016 @ 9:23 AM

  7. Sad and sick. If only…

    And they’re the ones who are supposed to “know better”!

    Thanks for the link, Joanne.


    Comment by Phylis Feiner Johnson — December 20, 2016 @ 4:15 PM

  8. thank you Phylis … could you please email me directly ? jmacisaac@roklogistics.com


    Comment by Joanne MacIsaac — December 28, 2016 @ 12:17 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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