The body electric – Our son’s condition

Our son’s condition kept getting worse, and everything we tried to help him failed. Then we discovered there was one final option: Electroshock therapy.

By Ann Bauer
Salon.com
Jun. 19, 2007

At the age of 3, my older son withdrew, becoming sullen and cross-eyed overnight. He stopped speaking and lost the ability to follow directions, vanishing inside a body that only rocked and swayed and arched away from human touch.

Together with my then-husband, I coaxed this little boy back: reading him poetry, drilling him with flashcards, crawling the floor in circles at his side. And when he returned to us, recovering in a way most autistic children never do, I believed the worst thing that would ever happen to us was done.

So when — after more than a decade of progress — my son began to regress, I didn’t see it. I couldn’t. I called it depression, anxiety, teenage sloth. I didn’t realize the enormity of what was happening until my 18-year-old son could no longer climb a flight of stairs or tie his own shoes. Even then, it took us another year to figure out that he had a condition called autistic catatonia: a second withdrawal, even more cruel and dangerous than the first, which occurs on the far end of childhood.

About a month ago, I wrote a story about my son’s misdiagnosis of schizophrenia during that yearlong period, as well as his frightening response to a couple of commonly prescribed antipsychotic medications, Abilify and Geodon. I cited a New York Times article about psychiatrists in Minnesota (where we live) receiving kickbacks for prescribing exactly those drugs and went on to report that my ex-husband and I finally took our son to Mayo Clinic, where he was correctly diagnosed and appropriately treated. I told how doctors there admitted a mute and feral young man, working in choreographed teams to figure out exactly what he needed, magically finding the person inside and bringing him back again.

What I did not report was that they used electroconvulsive therapy (or ECT) in order to do so.

I had two reasons for omitting this information. First, the point of my original essay was to bring attention to the misuse of antipsychotic drugs in children, adolescents and people of all ages along the autistic spectrum; I believed including the information about ECT (also commonly known as shock treatment) would hijack the piece, drawing attention away from the issues of overprescription and autistic catatonia.

But also, frankly, I didn’t feel like going through a hailstorm of reader outrage and Frankenstein jokes. Because even after seeing the benefits of electroshock for myself, I remained ambivalent about the treatment, protective of my son and simply raw.

So why go public now? Because after that original essay was posted, I received literally hundreds of messages (in fact, I continue to receive them, all these weeks later), from readers who had children, brothers, sisters or friends suffering from something similar. And these people were desperate for answers: How was my son cured? Did it last? And where could they go to obtain the same treatment for their son, daughter, brother, sister or friend.

I was in the process of responding individually to each of these queries when I received a letter from Max Fink, the doctor who had referred us to Mayo — and whose book “Electroshock: Healing Mental Illness” I used to research ECT — asking me to set the record straight. “I recognize the tremendous stigma attached to this treatment,” it said. “But if you wish to help other parents of such adolescents, you should disclose the fact that, despite its stigma, electroshock is one of the most effective treatments in medicine; that it has been in use for more than 70 years; and that its benefit-to-risk ratio [for acute patients] is very favorable.”

Everything he wrote is true.

- – - – - – - – - – - -

Convulsive therapy was introduced to modern medicine in 1934 by the Hungarian neuropsychiatrist Ladislas Meduna. He had observed that delusional patients who suffered spontaneous seizures often were miraculously cured and developed a theory that mental illness and epilepsy were “antagonistic” conditions: Those with the first had a deficit of neuroglia (branched cells that form the network for communication between neurons), whereas those with the second had a surfeit. By inducing seizures with an injection of Metrazol, Meduna believed he could “grow” neuroglia in the addled brain, thereby reversing disease.

Proponents of ECT no longer believe this. In fact, they can’t say exactly why it works, only that it does, swiftly and consistently, in roughly 90 percent of catatonia cases, and 60-70 percent of patients with severe depression, mania and intractable psychosis. Recently, neurologists have begun recommending regular electroconvulsive therapy sessions for patients with movement disorders, such as Parkinson’s, saying that it minimizes tremors and reduces the need for drugs such as L-dopa, which has notoriously negative side effects. (ECT has proved ineffective, however, when used for dysthymia, anxiety, substance abuse and personality disorders.)

The prevailing theory today is that ECT somehow repairs and sensitizes various neurotransmitter receptors, such as the ones that bind to serotonin, dopamine, glutamate and cortisol. But the truth is, no one really knows.

“Think of it like rebooting the brain,” one clinician told me. “You don’t know exactly why your computer isn’t working, but if you shut it off and turn it back on, nine times out of 10, it’ll come back online and function just fine.”

This is small consolation on a chilly, blue morning in May, as I drive to Mayo before dawn and walk through the still-sleeping ward. Inside my son’s room I stand at his bedside, reading the form I’ve been handed, then take a deep breath and sign so the doctors who have assembled six-deep can take him to a surgical suite, put him under a “light” general anesthesia, attach electrodes to his temples, and shock him until he has a seizure. Under any other circumstances, this young man — 19 years old, of normal intelligence, and legally in charge of his own medical decisions — would not need parental consent. But here’s what it means to be clinically catatonic: Though he is burly and muscular, my son’s mind is spinning so fast his body has stopped functioning altogether and he cannot exert enough pressure to use a ballpoint pen. His signature at the bottom of the sheet is illegible.

After I have scrawled my name under his, I hand the paper to my ex-husband who does the same. Then we walk alongside the bed that is being wheeled with effort by two medical students into a large, bright theater. They talk excitedly as we walk: This is the first time they will observe an actual ECT treatment.

Just then, the female student glances in our direction. Her face softens. “We’ll take good care of him,” she says.

And I nod blindly, through stupid, angry tears.

Then my former husband and I stand against a wall while they coax our son onto a fancier gurney, one with long straps that they pull out to their full length and buckle snugly around him. We watch the anesthesiologist lean over his frozen form and slip a needle into his arm. And I remember the day of his tonsillectomy, 13 years ago, when we — still hopeful young parents — held him down, our hands meeting on his Winnie the Pooh gown, while someone lowered a rubber mask over his small face.

Suddenly, there is a problem. “They don’t belong in here!” a voice says, and we are hustled out, into a small waiting room where I sit uncomfortably across from the man to whom I was married for 14 years. “Don’t worry, it’ll be all right,” he says, in lieu of touching me. And again, I nod.

Twenty minutes later, the male medical student comes out to talk to us.

“Your son is fine, everything went well,” he says in a bright voice. “And you should know, we got a really good seizure using the very lowest level of current.”

“Is that better?” I ask. “What does that mean? Is less current safer, or a sign that he’s closer to the surface than we think?”

The boy’s eyes cloud and he looks suddenly bewildered. He pauses, then says, “Honestly, ma’am, I have no idea.”

- – - – - – - – - – - -

By the early 1940s, electrical current had replaced chemical agents to become the standard method for convulsive therapy. Ugo Cerletti and Lucio Bini, the Italian researchers who developed the protocol for “electroshock” by experimenting on animals, were nominated for (but did not receive) a Nobel Prize in medicine.

But ECT’s popularity plummeted briefly in the 1960s when drugs such as imipramine and chlorpromazine were introduced and deemed preferable by most doctors. And it dropped off again in the mid-’70s, when the film “One Flew Over the Cuckoo’s Nest” depicted electroshock as medicalized torture, used by venal healthcare workers to keep mental patients in line. Despite a series of movies and television shows that vilified the therapy — “Law and Order” even did an episode about ECT, called “Cruel and Unusual” — rates crept back up over the next several decades, mostly for patients with drug-resistant forms of mental illness. And by the mid-’90s (the most recent period from which statistics are available), about 100,000 people in the U.S. were being treated annually with ECT.

“One of the major reasons ECT is so controversial is because of the way it’s been portrayed in the media,” says Dr. Teresa Rummans, professor of psychiatry and the former medical director for ECT at Mayo Clinic. “Our challenge is to get people to consider this therapy as an option, despite the negative things they’ve seen in the movies. It’s not a panacea. But for certain people who can’t be helped any other way, it can be life changing, or life saving.”

Today, even anti-ECT activists admit the therapy sometimes works in cases where nothing else has. But there is a debate raging about whether the side effects of ECT — including memory loss and confusion — are temporary or, in the language of the medical establishment, “persistent.” Earlier this year, Harold Sackeim — a professor of psychiatry and radiology at Columbia University — published the results of a 25-year study in the journal Neuropsychopharmacology, confirming that ECT can cause permanent memory loss.

We didn’t turn to this treatment until it was the only option left and our son was so lost, overwhelmed and deluded that his quality of life was entirely gone. I remind myself of this. I’ve read and reread the quote from novelist William Styron — author of the visceral depression memoir “Darkness Visible” — after he underwent ECT in 2000: “I’m writing. I don’t sense any memory loss whatsoever … I would say that my memory is somewhat better than it might have been a year ago.” I remind myself that today electroconvulsive therapy is practiced not only by the Mayo Clinic but also by neurologists and psychiatrists in nearly every well-respected academic and teaching hospital in the country.

Still, I pray that this is not a terrible, irreversible mistake.

After his first treatment, my son is wheeled back to his room. I check him over, anticipating strap marks from where he strained upward during the convulsion, or burn marks on his temples. All I find is a white bandage on the crook of his arm, from where the IV needle went in. He sleeps the rest of the afternoon. When he awakens, he appears confused, but he is able to drink some water. The nurse asks him if he has a headache; he thinks for a few moments then signals “No.”

Drained, my ex and I drive back to Minneapolis together. We’ve told no one what we’d gone to Rochester to do, in fear that some distant relative with a Scientology bent might file an injunction to stop us. Now, the weight of this sits between us and we barely speak.

Eighteen hours later, my husband drives me back to Rochester. It is 10 a.m. on a Saturday. We walk onto the unit and while we are being checked for contraband (anything with a blade, a sharp edge, or a cord), my son ambles out of his room and smiles at us. He raises a hand. “Hey, good to see ya,” he says, and walks — not quickly, but purposefully — into the lounge where three other patients are sitting in front of the TV. “What are you watching?” we hear him ask one of the others.

My husband turns to me, eyes freakishly wide. “Holy cow,” he says, grabbing my hand. “Have you ever seen him move like that?”

And, of course, I have. But it was long ago: before I met this man, before my son became depressed and discouraged, before the catatonia set in.

Later that day, we play hearts and when my son shoots the moon [taking all the heart tricks, plus the queen of spades; a move that requires careful strategy and a straight face], he gathers up all the cards and crows the single word “Yes!” out loud.

It is an eerie, wonderful sound that doesn’t fade for me, even as we are riding home.

In “Flowers for Algernon,” the science fiction novella written by Daniel Keyes in 1959, a retarded janitor named Charlie Gordon undergoes brain surgery and is “cured.” His IQ rises from 68 to the genius range. Then the process begins to reverse and Charlie, now sober and worldly and able to read in several languages, must experience his own deterioration. In the final pages of the novel, after writing a scientific paper detailing the descent, he becomes once again a shambling, childlike man.

Bringing our son home from the hospital is something like this. After seven ECT sessions, he seems ready: still autistic — this is a lifelong condition that no current therapy will change — but clearheaded, affectionate, gentle and ready for real life. On the day of his arrival back home, he writes a new schedule, updates his calendar, washes his clothes. On the second day, he is a little shakier, more tentative; around dinnertime, he begins laughing joylessly, under his breath.

“I can feel the catatonia coming back,” he whispers to me late in the evening. “Please, help me. Make it stop.”

Day 3, he is supposed to return to work and he does, but his supervisor calls midway through the shift to say there is a problem: By the time I arrive, he is standing in place, swaying, tears streaming down his face. He cries for the next 17 hours, taking breaks only to eat, which he does in enormous quantity, telling us he’s trying to erase the sadness and bad thoughts. On Day 4, he pushes through the wall of me and his father, sobbing, saying he is leaving us and leaving his life, then walks away — a shaking, swooning mass topped with a backward baseball cap — into a steadily graying twilight.

Together with two police officers, a paramedic, and our respective spouses, we track him down and take him back to Mayo, where they determine he needs more ECT. This time, however, the response is not so immediate: He lies in his bed, lumpen and rank-smelling, his head lolling. It is only after the third treatment that my son is resurrected again. I call and he answers the phone in his old voice, telling me he’s feeling quite good now and would like to go home again soon. He remembers little of the four days between hospital stays but promises things will be different this time. Better.

That’s when the psychiatrist in charge of his case calls a meeting. We’ve reached a decision-making point, he says. ECT alone is effective but transient. Also, there are residual symptoms of the catatonia: tics, disordered thoughts, twilight around the edges of his mind. The best option is to continue with the ECT three times a week for the duration of his hospital stay and afterward, once or twice a week on an outpatient basis.

In addition, they’d like to try a drug that will bridge the treatments and sustain their effect.

Because our son has responded so badly to medications in the past, all four parents object. But we are told it is the only option, barring constant, lifelong ECT.

“Most people will need something to keep them well after their course of treatment,” says Dr. Rummans. “Electroconvulsive therapy resets the circuits and gets things working. But I think of it the same way as when someone has electroconversion for cardiac arrythmia: They still need medication or surgery afterward to maintain. The brain works similarly to the heart in this respect.”

Here’s what I know: Even given the potential risks and my distrust of its murky track record, ECT has brought my son back to life twice and I am suddenly more afraid of what will happen to him — that inevitable Charlie Gordon-like crumbling — if he is disconnected from the machines.

- – - – - – - – - – - -

It is Memorial Day weekend and our family urges us to get away. “You need to take a break from this,” my father tells me. “Go out of town for a couple days and we’ll take over at Mayo.”

My husband and I throw a change of clothes into a bag, climb onto our Triumph, and ride 12 hours through the Badlands and into the Black Hills. On the morning of the third day — our final one — we go to Bear Butte, the mountain just outside Sturgis, S.D., to which many Native Americans trace their spiritual roots.

We know that bikers have a reputation for desecrating this sacred place. So we are careful: touching nothing, taking nothing, leaving nothing behind.

It is a cool afternoon with clear skies but dampness that licks our cheeks and arms. We climb the rubbly laccolith through trees hung with colorful Indian tobacco ties, bits of cloth representing the six directions: north, south, east, west, above and Earth Mother. When the wind blows, they move like soundless bells.

As we near the top of Bear Butte, a storm gathers and I run ahead. I reach the wooden platform at the peak and stand in the center, watching black clouds scud like ships. Lightning cracks to the north of the mountain. Then, as if in answer, there is a flash from the south. I face east so I can watch both sides of the storm. Up here I am taller than the trees, the highest point between Rapid City and the Wyoming border, inviting one of the bolts to strike. Never has the power of electrical current seemed so clear and there is a part of me that wants to feel it, here in this hallowed place. I imagine the six directions have conspired to tell me something and I must listen, so I look toward the forked branches of light.

My husband arrives then, breathless, climbing the steps of the platform and coming toward me with his arms outstretched.

“Sit,” he orders. And I do. But I keep my head up, feeling the rain on my face and watching the flickering sky.

Comments (11)

Ivonne ColonNovember 16th, 2008 at 1:16 am

I’m glad your experience with Mayo’s ECT was positive. I wish I could say the same for me. I put my hopes in Mayo’s reputation and was so disappointed with their action towards my son. They too recommended ECT because the med were not working. I had hope that they would properly diagnose his condition…bipolar or depression. Instead they convinced him that ECT works in 9 out of 10 patients; that he would notice a difference after 3 sessions. That didn’t happen, they wanted him to have all 12 sessions, 2/wk. My son was that one patient were ECT caused more damage not less. I feel I should have put my foot down and say don’t do this, but my son was so hopeful. His thoughts don’t seem to connect. His thinking is not right. A 4.0 GPA student that can’t hold two thoughts together. Mayo let us down.

MonicaDecember 4th, 2008 at 12:53 pm

I’ve wanted ECT for several years. My psychiatrist refuses to do it, saying it’s too dangerous. I’m 32 yrs old, and have been dx’d with mental illness since a month after my 16th b-day, although I know it was there prior to the actual dx. My initial dx was bipolar disorder, and now my dx’s are: schizoaffective disorder, anxiety disorder, and PTSD. I’ve been suicidal for a long time, it comes and goes, I just want to stop the pain. I’ve been a cutter since my mid teens, although I do it with far less frequency than I used to. I’m on disability bcuz my illnesses make it impossible to hold a job. I have two amazing children, and I just want to be the best mother I can be without being either depressed, manic, or psychotic. IDK.
BTW, I live in SD. Both the Badlands and the Black Hills are so beautiful.

Denis O'Brien, PhDJuly 5th, 2009 at 11:59 am

Anyone here reading Ann Bauer’s Salon article needs to do their homework before before following Fink’s advice.

For instance, you need to know how Fink and his buddy Richard Abrams are viewed by many professionals and patients. Google “fink” + “somatics, inc.” There have been complaints of disturbing financial conflicts of interest for decades.

I would hardly agree that the experiences Bauer described would qualify as a success. If your child responded only transiently to such a violent insult to the brain, would you then sentence him to years of the same? After years of ECT, how well does any person’s brain function? Will the long-term damage justify the brief, short-term benefits?

Before you start down a long, one-way road, I would hope that you would wade into the literature — and I don’t mean just Fink’s biased work — in order to try to answer those questions.

jeanneJuly 25th, 2009 at 6:39 pm

In response to Monica, I am 39 years old, and have been diagnosed with PTSD, Anorexia, and Bipolar disorder since age 15. Were it not for the fact that I have a gifted IQ, there is no way I would be alive at the present moment. The majority of my adult life has been spent with different psychiatrists playing with a panacea of medications, none of which which has worked for any length of time. I can say that I have been on lithium, depakote as well as any other mood stabilizer or SSRI known to mankind–I seriously think I have taken well over 30 different medications. The first series of ECT for me was in 1995 following a potentially lethal OD on tegretol. I was so set on killing my self to relieve the pain, that ECT was the only option. It took 14 treatments to obtain relief and it is noteworthy that the fall afterward I entered a master’s program, which I finished a year and a half later with a 4.0. (In retrospect, this was probably part of a highly functional manic episode).

My next debilitating episode occurred in 2002. At this time, once again, I received 14 ECT treatments. It was just as functional in eliminating suicidality as was the first series. This time, however, I did experience significantly more memory loss. Still, it was well worth while because I would have committed suicide to relieve the pain in which I had been livining for so many years. Even with the memory loss, I was able to return to work and school, finishing significant work towards my doctorAL degree.

Unfortunately, the time between serious episodes was less this time. My next serious episode began in 2006. I was able to hang on, alternating between serious manic and serious depressive episodes, most of the time being spent suicidAl, many involving attempts. My current series of ECT began in March. I am on what one would call a maintenance program. I can honestly say that I would be dead without ECT. The memory loss is a fair exchange for the suicidality and the constant mental anguish. Use your own judgement in making a decision, but it worked for me——–and between three series, I have had over forty treatments.

MaritzaAugust 17th, 2009 at 2:36 pm

My mom suffers from severe depression with psychotic episodes. When I was 17 she had her fist episode. She was unable to take care of herself, she would eat, or do any basic essential that a human needs. It was terrible we had her going from hospital to hospital no one could tell us why this happened or what she had. All kinds of test and assumptions were made but it lasted 5years then at one of the best Hospital in Chicago a doctor found the answer. She was suffering from severe depression with psychotic tendencies. They did ECT and when she came home we noticed that she was getting better. it lasted for 16 years with no relapse. March 2009 she had a relapse and the meds are not working. we had get the ECT but because we were skeptical because the last treatment after 3 she was fine this time she had 5 and is stable but not yet out of it. We are going to get her back on the ECT. As her children we suffer to see her that way and we know she is suffering. She is going to be a new grandmother her son’s first baby and she cannot enjoy that and she doesn’t want anyone to see her in that condition so she shuts herself away from people that love her. I have been ready on the effects and all the negative but I have to say it brought my mother back when i was young it gave 16 years of freedom not maintenance ECT and she had a wonderful life now that she has fallen we want to get her back. The person they become is not the person we know. We learned so much this time since we all all adults now we took charge of her care and making sure we ask all the questions needed and researching. My mother has a disadvantage she is highly susceptible for all the side effects of medication. When we tried Seraqual all her muscles in her body stopped working she could not even talk to us. We would talk to her and she just looked at us. We did not know what was going on but the look in her eyes told us that something was wrong and she was asking for help in her eyes. We rushed to the ER and sure enough she could speak or move her bowels lucky the ER picked up on what might be the cause and started treating her right away. Medication are also limited to us because of her reaction to them. At this point ECT is her best option. It may not be for everyone and everyone has different reaction to it but what i think it the same for medication it can to terrible things to you body but we take the risk and take the meds it may work or may not. ECT is the same it may work for an individual and may not work for someone else. Bottom line seeing someone you love in that condition is difficult and heart breaking and they too are suffering knowing that there family is seeing them that way.

reneeMay 13th, 2010 at 8:04 pm

I write this as someone who has HAD ect — over 80 treatments, in fact. It was only 6 months ago that I stopped having them. The experience is much different from the perspective of the patient.

RaymondJune 10th, 2010 at 3:16 pm

To Monica, Jeanne, Maritza (‘s mom), and notwithstanding all the good work and words of Ann Bauer Salon:

What happened in your lives long ago – what terrible incident, or series of events – that is not spoken about here? The causes of most of our ailments are to be found in our past, IN OUR HISTORY. I am very sorry that your days have been / are so painful and difficult. Please visit alice-miller.com and see does it make sense. Google Shock Therapy in the top corner for related articles on the site.

Respectfully.

Raymond Lambert
Dublin, Ireland

many thanks for this vyirrpajcg click here :-( efigevcahixtltp, :) fwrxrrctxz [url="http://www.aiyddetrrqep.net"]or here[/url] :D aqktfvjlnorb, :-( pfdddnoukh http://aiyddetrrqep.info O:) aqkrrmun, :-( jsarhtnmjr [url=http://aiyddetrrqep.ru]zlidtqndsf[/urJune 11th, 2013 at 12:20 am

wnnovkrbblrs

is this a themeforest theme? rknksdbnov click here >:-O wbtzjpy, >:O qdttbbbhpc [url="http://www.bmrgfuugzmcd.net"]or here[/url] 3:-) fdeewacjpeofldd, :-X kbllevegky http://bmrgfuugzmcd.info =) cgisbnhy, :-0 ltzhlwngmy [url=http://bmrgfuugzmcd.ru]nyJune 12th, 2013 at 11:49 pm

oowytdlwtply

astounding post ombuyyegxq click here :|] owcagoa, :-0 bqnabxfrmv [url="http://www.tutxchovhbwn.net"]or here[/url] :/ uqwcztse, :/ wcjhtkfbqc http://tutxchovhbwn.info :-( cqvwgtwtpntczgr, :/ ltthaghday [url=http://tutxchovhbwn.ru]enpbflicji[/url] :V pocalJuly 3rd, 2013 at 3:35 am

twgxzwwhljhu

astounding post kygpxtoknc click here :D tetuvpww, >:-O bxsqxnkqgf [url="http://www.wbxuwixbamve.net"]or here[/url] :-( amwgzltfuwolqbz, :|] lkrixkpxvt http://wbxuwixbamve.info :) amwgzltfuwolqbz, :3 snfszlmdzj [url=http://wbxuwixbamve.ru]xjvqzeuzyc[/uJuly 5th, 2013 at 10:00 am

zhofqitzapsw

Leave a comment

Your comment:

Subscribe without commenting