A Child Lost to Psychiatry

On July 29, 2021, our youngest child, Catherine, died two weeks before her 21st birthday. Home after a nearly two-year-long psychiatric hospitalization, she was out with us on one of our daily drives when suddenly, she opened the car door and jumped out. She sustained a fractured skull from which she never recovered. We believe she was driven by OCD-like impulses that emerged after exposure to antipsychotic drugs, including involuntary treatment with clozapine. But a suicide attempt might have been understandable: The last six years of her life had been a living nightmare, thanks to the adversarial actions and toxic treatments of the medical-model mental health care system, whose traumatic effects greatly exacerbated her original problems.

Though our daughter is gone, we are still mystified about the origins of her sudden and severe psychosocial decline. We suspect it had something to do with underlying medical conditions, including genetic and hormonal issues along with inflammatory triggers. We are cataloging the harms done by those we trusted to help her: piecing together, document by document, what happened to Catherine—and to us!—as we struggled to advocate for her. For doing what we felt was best for our child, we were demonized and nearly criminalized by people in power. The opportunity to humanely support Catherine’s mental health during adolescence was crushed by the “rush to treat” her in depressive settings with coercive and debilitating “therapies.” This essay attempts to summarize our story in the hope that those who subjected Catherine to these risky and traumatizing procedures will not be allowed to continue to mistreat children and parents and that other families can learn from our experience.

For as many questions as we have about the tragedy that befell Catherine, we have enough knowledge to firmly hold a few convictions about psychiatry’s paradigm for treating mental illness. First, we know that allopathic psychiatry’s “standard of care” and inhumane treatment of our daughter accelerated her descent rather than arresting it; second, we know that she was not suffering alone; and third, we hope that telling Catherine’s story will potentiate positive change in a system that is failing miserably to address the needs of millions of people.

A “Normal” Childhood
Catherine, then 14, was once a hopeful and blossoming child. (Photo courtesy of the Stence family.)

Ours was not a family one would expect to produce a troubled child. We were not perfect, but we were comfortable and happy: We loved each other and the four children we brought into the world, and we celebrated life and weathered its challenges. We took comfort in our Christian faith and valued residing in a diverse community.

The infrastructure and institutions in our region made us feel fortunate. We were close to hospitals, universities, and parks. We witnessed professionalism among our local first responders and the town government. Russ himself had served the community, retiring after 30 years as a psychologist on the Committee on Special Education for a local school district.

Catherine, our youngest, had enjoyed a relatively happy and “normal” childhood and early adolescence. She was bright, creative, kind, well-behaved, academically capable, and usually healthy. Her band teacher noted her good sense of rhythm and said she was the best clarinet player in her class. She could sing and play the ukulele. She entertained us with her fanciful drawings of animals and expressive faces. Though on the shy side, she made sweet memories with playmates, enjoyed sports and recreation with friends, and was recognized for her ability to articulate mature concepts in her youth group.

There were concerns at times. She struggled a bit in the public-school setting, reported some bullying, and began to exhibit symptoms of allergies and sleep apnea. We were able to deal with all of these concerns through setting and lifestyle changes, and her health and spirits improved.

A Strange Episode: Entering the Mental Health System

However, in the fall of her 13th year, we noticed Catherine was just staring at her schoolwork as if she were in a fog. She began to withdraw socially. We assumed she was experiencing normal adolescent fluctuations that would resolve on their own, so we decided to wait a year before changing anything. In retrospect, this behavior seemed to coincide with a possible inflammatory reaction to a booster for the DTaP  vaccine, in concert with hormonal changes. (In some people, the inflammation caused by the expected immune-system reaction to vaccinations has been linked to low mood and feeling ill.)

Catherine’s saga with the mental health care system, though, didn’t begin until late December 2015, following what we now see as significant inflammatory events: receiving six vaccination strains at once and accidentally ingesting an antibiotic to which she’d had a prior adverse reaction. She had not been “herself” for several days, and when we learned she had ingested an unknown amount of a sulfa-based acne medication, we had our son call 911.

By the time first responders arrived, she was delirious, with hot, dry skin and rapid heartbeat, and had begun to remove her clothing. After observing her and speaking with us, they decided to take her to the hospital. We agreed only because we feared the consequences of a possible prescription drug overdose. Catherine, meanwhile, was terrified, crying and resisting being strapped to the gurney. We understood instinctively why she feared the hospital: She didn’t want to meet the same fate as her older sister, who had had horrible experiences in psychiatric wards including nearly dying of neuroleptic malignant syndrome.

We naively assumed the ER doctors would perform a thorough medical evaluation of Catherine and treat her accordingly. But except for one brief check-in and another to bring a pill for her headache, they left us sitting for hours while Carol listened to her alarming self-reports. She lamented, “Why can’t I remember anything? Do I have dementia?… My head hurts… The wall looks like it is moving closer and then moving away.” Carol also witnessed her head jerk and gaze roll upward during a classic “absence seizure.” She appeared to respond to inner stimulation and asked, “How do I get out?” as she pulled on her tongue and put her fingers near her eye.

After we waited from morning ’till night, they transferred her to the only child and adolescent inpatient psychiatric unit in our area, at a hospital we’ll call Lakeside Regional—the same place that had harmed her sister. Strapped down and sobbing on the gurney, she pleaded with Carol not to leave her, but we believed we had no choice. It still feels like a moral injury to have participated in this process.

We were greatly relieved that the child and adolescent unit was family-friendly, allowing for 24/7 visitation with the option to stay overnight, which we did.  And it was music to our ears when Dr. G., the clinical director and Catherine’s attending physician, who described himself as “the most skeptical psychiatrist I know,” said he thought she could have a full recovery. And he had openings in his private practice!

So although Catherine had to spend Christmas 2015 in the psych ward, she was discharged home on New Year’s Eve, having been diagnosed with “Psychotic Disorder, NOS” and placed on a single medication, Tegretol. (It is virtually impossible to be discharged from a psych ward without being on at least one medication and having an outpatient psychiatry appointment lined up.) Dr. G. seemed to support our preference to withhold neuroleptic medications, to seek other therapeutic options, and to recruit support within our daughter’s social network.

A Trial on Neuroleptic Drugs

A month later, however, not much had changed. The Tegretol was stopped because it seemed not to help: Catherine remained minimally cooperative and dysfunctional much of the time. After an MRI turned up no abnormalities, Dr. G. told us that even in Finland, where the Open Dialogue treatment paradigm is often used to help young people with first-episode psychosis, they would be considering antipsychotic medication at this point. (He assured us that a taper could begin after she was stabilized.) So we reluctantly agreed to a trial of a low dose of Seroquel, which had had relatively benign effects on our older daughter.

Looking back, we believe the introduction of antipsychotics may have set off a neurologically clouding and damaging process that obstructed discovery of the source of her dysfunction and the use of safer, evidence-based treatments. By March, it was clear that the trial on Seroquel had not helped: Catherine remained erratic and uncooperative, refusing to engage in school. So our family collaborated with Dr. G. in getting Catherine back to the psych ward at Lakeside Regional.

During this intake, a resident remarked that Catherine’s presentation was different from typical teen bipolar symptoms. He expressed puzzlement and concern for her mysterious presentation. This felt validating and we were hopeful she would receive personalized care. The hospital released her after about a month, again diagnosed with “Psychotic Disorder” but now on Dr. G.’s neuroleptic of choice, Risperdal, along with a small dose of the benzodiazepine Ativan as needed.

While she emerged better than before she entered, Catherine was still a shell of her former self. She remained reluctant to engage with school or family routines. So, we arranged for a cognitive assessment through our local school district and found that, over the past two years, her functioning level had plummeted from above-average to borderline deficient (a drop of over 40 IQ points)! We then arranged for outpatient neuropsych testing, which also confirmed Catherine’s depressed functioning but revealed no explanation for this drastic decline.

Although her ability to engage with others was somewhat better now, our attempts to enlist Catherine’s “social support network” were disappointing. She had changed so much, and it seemed very hard for her small circle of friends to understand what had happened to her or how to respond. Despite their concern and occasional efforts to include her, they were in the prime of life and focused on their own lives.

We continued to work with Dr. G., whom we now regarded as a family friend. While he appeared friendly and supportive, we were puzzled that he did not respond to certain questions, such as those about medication-induced dopamine supersensitivity and tardive psychosis, syndromes in which antipsychotic drugs cause a paradoxical reaction in the person taking them.

The “Shutdowns” Begin

In September 2016, after Catherine had been on Risperdal for about seven months, something strange occurred. One day, as she was sitting at the computer, she began to giggle nonstop. She either could not or would not explain what was so funny, nor could we engage her in any rational conversation. This frequent, inexplicable giggling and seeming inability to communicate continued for a couple of days, and we began to wonder if she was suffering from Pseudo Bulbar Affect, a neurological condition.

The episode was followed by a “shutdown” during which she went through the motions of self-care and did little else but lie passively in her bed or rock in a rocking chair. We contacted Dr. G., who attributed the behavior to under-medication and prescribed an increased dosage. We complied and, about a week later, she emerged quite suddenly from her shutdown, after which she was up and about and conversing much more normally.

We figured the increased medication had helped her until about a month later, when the inexplicable excessive giggling and complete irrationality suddenly re-emerged, followed by a similar shutdown and a just as sudden “reawakening” about a week later—all while she was taking the higher dose of Risperdal.

Much earlier, Dr. G. had suggested using lithium, but had backed away from that since Catherine was not showing symptoms of bipolar disorder. But in light of these emerging “up-down” episodes, he raised the prospect again. At an office visit, Catherine responded that she would rather die than take lithium because she had seen her big sister suffer under the effects of the drug. Furthermore, Catherine, as an emerging and self-conscious teenage girl, was concerned about the 20 or 30 lbs. she had already gained on the Risperdal.

At this point, we were wondering if the monthly episodes had something to do with Catherine’s menstrual cycle, and sure enough, almost like clockwork, the same thing happened in early November. While we had gotten her to take the Risperdal during the previous episodes, this time she began to refuse the drug. Knowing of the dangers of sudden withdrawal from such medication, we worried that all hell would soon break loose.

Integrating a Holistic Approach

Around this time, Dr. G. informed us that he wanted to refer Catherine to the OnTrack New York program, designed to provide comprehensive services and monitoring for young people who have experienced a first episode of psychosis. He was concerned that he had not been able to establish a good “therapeutic bond” with Catherine because she associated him with the hospital, and readily acknowledged a “PTSD piece” to her difficulties. He did not express any criticism of us as parents or imply that he saw us as obstructing or undermining treatment. So with some sadness, we followed through with the intake process for OnTrack New York, only to have them reject her based on their belief that she had a primarily “affective” rather than “psychotic” disorder.

The monthly episodes continued, with near-normalcy in between. Still seeking an outpatient prescriber and a better approach to addressing Catherine’s struggles, we discovered a holistic/integrative psychiatrist, Dr. T., through a flyer posted at a local natural foods store. We reached out to her, and she accepted Catherine as a patient. Catherine really liked Dr. T. and, with her assistance, we were able to obtain genetic testing for our daughter through a company called Genomind (recommended by a neurologist friend).  The results identified medications that were kinder for her metabolic profile and evidence-based supplements that could support her brain health.

Dr. T. also helped us arrange hormonal testing, which revealed that Catherine had estrogen dominance, aka clinically low progesterone (it’s associated with mood and thought disorders, among other symptoms). We hoped that this information would facilitate a personalized approach to unravel the cause of Catherine’s bewildering and sometimes debilitating condition and to find effective treatments.

With Dr. T.’s assistance, we had begun to give Catherine a cyclical low dose of natural progesterone (to correct the estrogen dominance) along with prescribed supplements. Results were mixed: On one hand, Catherine’s shutdowns became more severe starting in January 2017, after Dr T. added a compound called phosphatidylcholine to her regime. On the other, our daughter enjoyed relative normalcy the rest of the month, capped off in March by a snowboarding trip to Vermont and a sleepover with her best friend. Then, the severe monthly shutdown recurred just as we were hit with a bad winter storm and power outage that showed no signs of abating. After consulting with both Dr. T. and Dr. G., we returned Catherine to the child and adolescent psych unit at Lakeside Regional.

 “Catatonia” and a Return to “Antipsychotics”

Once she was in the hospital, the psychiatrists spoke the word “catatonia” for the first time in reference to her monthly episodes. As for what to do about it, at first it appeared that the staff was seriously considering our theory that Catherine’s behavior was linked to dysregulation of her menstrual cycle. Dr. G., for example, arranged consults with the hospital’s neurology and gynecology departments. After the OB/GYN consult, she was switched from progesterone to a birth control pill, Yasmin. (We had hoped that cyclical progesterone would be given more time at the higher dose Dr. T. then recommended. Two years later, a resident said that Yasmin was now contraindicated for her.) We and Dr. T. were exultant that the psychiatrists saw her “wake up normal” from the catatonia, just as we had for the previous seven months. We were hopeful they would collaborate with us on how best to address her unique symptoms and needs.

Instead, they told us there was no alternative than to return to taking an “antipsychotic” drug. This seemed to signal a return to the one-size-fits-all paradigm of psychiatric treatment. Catherine continued to refuse it—she said it made her feel bad. “Can I not take the medication? Can I not take the medication?” That plaintive plea as she followed the doctors down the hall after her treatment team meeting haunts us to this day. We did not yet know that the neuroleptic medications we were pushing her to go back on may actually cause catatonia! (This, told to us two years later by different psychiatrists at the same hospital who were by then hell-bent on giving her ECT.) Another thing we were never told, but discovered later, is that Risperdal is known to alter hormonal functioning. Too late, we began to understand the concept of iatrogenic harm: The very things prescribed to Catherine to help her may well have been making her worse.

In the end, she was medicated by force, via injection. The weekend in which she was first subjected to this was a complete debacle. After having been relatively stable, following the second forced antipsychotic injection she reverted to irrational babbling and her catatonic symptoms returned.

To make things worse, directly after this traumatic episode doctors proffered oral lithium—the drug she’d previously said she’d rather die than take—with no apology or even acknowledgment of how dysregulated she’d been rendered by the forced antipsychotics. Since the lithium was presented alongside the usual Yasmin and supplements, she also refused them, negating the good they might have done.

From here, things went drastically downhill, with a rookie psychiatry resident threatening us with a kangaroo court called a Rivers hearing while Dr. G. was on leave. We had refused to allow Catherine to continue to undergo the torturous forced antipsychotic injections, but in the face of legal action, we felt we had no choice but to give in to these assaults for the last two weeks of her hospitalization.

During her stay, which stretched to 74 days, she was subjected to several antipsychotics.  None helped and she had bad reactions to some. During these neuroleptic trials multiple incidents occurred that suggested that the drugs were distorting her nervous system and her response to stimulation. This gauntlet of suffering wore Catherine down, and she murmured, “I just want to wither up like a leaf and blow away.”

After nearly three months of detention, we were finally able to get her discharged. She left the hospital in a totally demoralized state. We actually had to coax her out the doors—she had trouble believing she was allowed to leave. Sitting in the wheelchair as we pushed her toward the car, she gazed awestruck at the trees and sky overhead. When we arrived at home, she happily greeted her Goldendoodle and swung on the tire swing in the backyard. She called a friend and spent more time talking that night than she had for the past two-plus months.

Struggling with At-Home Care

After Catherine’s discharge, our family endured an extremely stressful five-month period during which we simply could not get any local psychiatrist or clinic to work with her—and vice versa. This was mostly because she was so traumatized and afraid of being forced back into the hospital. For a while, she was so fearful that she wouldn’t even get in the car with us to go to a park or to get a hamburger!

Then, in late spring, Catherine’s ongoing difficulties and our lack of progress in re-establishing psychiatric services caught the notice of a local agency social worker and Catherine’s pediatrician. Despite the fact that we had been assiduously seeking help for our daughter, both of them submitted Child Protective Services referrals against us for neglect. Fighting these allegations, based on mistaken and sometimes outright false information in her hospital records, drained valuable time and energy from our efforts. Thankfully, we were able to successfully refute them.

By the fall of 2017, we had enlisted the services of another integrative psychiatrist, Dr. Michael Gurevich, who had been recommended to us by a trusted administrator at the Foundation for Excellence in Mental Health Care. Catherine finally started to get back on her feet. She attended her church youth group, did some snowboarding, visited parks with the family, and engaged in many other activities that she had not done for quite a while.  The community mental health agency whose services we also enlisted told us that she had made the most progress they had ever seen for somebody with her level of dysfunction.

Progress continued under Dr. Gurevich’s care, in “two steps forward, one step back” mode. We decided that we would need to obtain guardianship of Catherine when she turned 18 so that she would be able to continue her holistic care. Cautiously optimistic, we planned to relinquish the guardianship as soon as she recovered her agency.

In the meantime, she was taking a variety of prescribed supplements with evidence-based efficacy, along with a relatively low dose of a neuroleptic medication and benzodiazepine as needed; lithium was later added and was being carefully titrated. Our psychiatrist was using them judiciously due to Catherine’s long-standing “psychotic symptoms,” which had not abated with a fairly extended period off the drugs. We continued to monitor her closely, ever vigilant for the inevitable side effects.

We became concerned about her response to Abilify, the second-generation “antipsychotic” to which she had been switched. She had begun to develop OCD-like symptoms, including repeatedly counting on her fingers aloud and becoming stuck in loops of indecision, such as walking in and out of a doorway. So, we agreed that it would be best to return to Stelazine, a first-generation drug that had worked better for her. Unfortunately, it was unavailable, so we tried using Seroquel again. Unsettled, Catherine refused her prescriptions. On December 20, 2018, after her rapid decline into a dysregulated state, we felt we had to call 911. Catherine ended up back at Lakeside Regional once again.

ECT and Drug Cocktails

This time, hospital psychiatrists decided it was time to pull out their “nuclear arsenal” and began pushing to subject Catherine to ECT, or electroconvulsive “therapy.” She was clearly in a very dysregulated state, but nothing like those earlier monthly episodes. They referred to her behavior as “excited catatonia,” and despite the fact that those symptoms had abated after she’d gone back on medications she’d missed, they decided to change and drastically increase her drug regimen, rendering her extremely passive and low-functioning.

Even in her debilitated state, Catherine was terrified at the prospect of having her brain shocked, and we were vehemently opposed to it. As a minor, Catherine didn’t have the choice to refuse. When we resisted on her behalf, the hospital called a Rivers hearing,  essentially using the state’s “mental health court” to circumvent her rights and ours. Using demonstrably false information about her medication history and our allegedly “negligent” care as his guide, and apparently based on the false narrative that she had been in a state of “unremitting catatonia” at home, the judge ordered Catherine to receive forced ECT.

She had six sessions in all, that we know of, and they did not go well. Once, according to hospital notes, she tried climbing into a trash can to avoid going to ECT. Staff later found a note written on a napkin in her room that said, “HELP!” During another one of these treatments, her bladder was evacuated. After yet another session, Carol and a friend found Catherine in her room, looking shell-shocked and weakly singing “This Little Light of Mine.” After the last session, Catherine approached Carol with a mask-like face, showing no emotion. And all for what? There was no improvement. Following ECT, she manifested new problems, including memory loss.

With ECT a proven failure, the hospital psychiatrists then subjected her to an increasingly complex and potent polypharmacy cocktail, beginning with the forced use of Clozapine, a particularly risky antipsychotic that was contraindicated by her genetic testing results. The drug cascade multiplied food cravings. Irritability and incidents of aggression emerged that were not part of her pre-drug personality. In this fog of drugs and continued confinement, she lost her “sparkle” and affection toward family and friends. And so it continued for a total of 21 months, the first five months in the local acute care hospital and the last 16 in the nearby state hospital.

A Shell of Herself: Catherine’s Last Months
A middle-aged white man and his heavyset, dark-haired adolescent daughter
Russ and Catherine, then 20, during a winter camping trip taken in hopes of rekindling her former interests and helping her recover from the effects of aggressive psychiatric treatment. (Photo courtesy of the Stence family.)

On September 30, 2020, we were finally able to extricate Catherine from the psychiatric gulag to which she’d been consigned. In the nearly two years in which they had had full control over her life, the hospital billed our insurance for nearly one million dollars in “treatment.” Yet it had done nothing to resolve her original challenges or restore her former strengths. Instead, it assaulted her personhood and grotesquely distorted her body, mind, soul, and spirit.

Still, we were very thankful that she was once again back in the care of a holistic, integrative psychiatrist (Dr. Gurevich). We were also thankful for understanding friends and family and for the local medical center, which accepted Catherine at discharge and provided caring services. But arranging appropriate home care for our daughter proved rather daunting. Throughout most of the 21 previous months, she had been under one-on-one supervision in highly controlled, locked facilities. Now it was just us, trying to figure out the best course day by day.

At one point, we were reported to Adult Protective Services by the very agency we had earlier reached out to for community support. There had been staff changes, and these new people seemed to regard themselves more as our probation officers than as partners in Catherine’s recovery, monitoring us carefully lest we should deviate in any way from the hospital doctors’ outpatient instructions. The APS referral was done preemptively, with no attempt to notify us beforehand, which would have allowed us to correct the misunderstandings that prompted it. And once again, it was quickly discharged as unfounded—but the acute stress from the added burden of disproving the charges was traumatic for us.

We did make some progress with our daughter, but it was in three steps forward, two steps back mode. Throughout this saga, we found the incuriosity of the psychiatric establishment both astounding and appalling! If we had not raised the issue, there would have been no concern about the nosedive in Catherine’s cognitive functioning over the course of “treatment,” rendering her to all appearances severely developmentally disabled. In Russ’s experience as a school psychologist, it was unheard of that a school district would refuse to assess any student, regardless of the severity of their disability. Yet when we sought to have Catherine’s cognitive and language skills reassessed during her extensive psychiatric hospitalization, the hospital denied us on the basis that she was “not stable enough.” And our parenting was faulted because we did not sufficiently engage her in outpatient psychotherapy pre- and post-hospitalization (we tried, with limited success). Yet in the 21 months when doctors had total control of Catherine, she was offered not a single hour of psychotherapy!

What grieves us the most about the last six years of our dear daughter’s life was that everything she feared, and worse, happened once she was sucked into the black hole of being diagnosed with “serious mental illness” and subjected to the coercive, dehumanizing “treatments” that ensued. And that, despite our extensive efforts, we were unable to prevent or stop this process, nor to nurture her back to health once it was over. Although we made slow and careful adjustments to her prescribed drugs after extricating her from her last psychiatric hospitalization, it appeared the shock treatments and toxic cocktails had done irreparable damage to her brain. Her personhood had been greatly diminished, and she lost all of her friends and almost everything else that matters to a young person.  The piling on of medications had wreaked havoc on her body, resulting in her weight doubling and her losing interest and pleasure in almost everything except eating.

We cherished the little glimpses of Catherine’s real self that emerged from time to time during the last 10 months of her life at home with us. Thankfully, she was usually oriented to her surroundings and could converse when she felt comfortable, still demonstrated affection and kindness, and enjoyed music and riding in the car. But it was also painfully evident that she knew something was wrong. She would repeatedly ask “Is ugly pretty?” and “Am I retarded?” Not long before she died, she began exercising vigorously in the yard, seemingly determined to regain control over the shape and health of her body. Throughout, she seemed only partially placated by our reassurances, and we wondered if her continuing “psychosis” served as a protection against the excruciating pain of facing the reality of her severe decline and shattered dreams. Now that she is gone, we’ll never know for sure, although one journal entry offers a clue: “My body got too big for me, and they didn’t care.”

Lessons Learned

Looking back, we don’t contend that Catherine’s doctors were evil people who intended to harm her. However, they chose to ignore personalized information that should have guided their treatment and they appeared oblivious to the trauma they were causing our daughter. We believe that it would be virtually impossible for a psychiatrist to acknowledge causing any harm because it would simply cause them too much cognitive and moral dissonance.

And so it continues: How many other teen girls are subjected to “treatment” that distorts their bodies and behavior and destroys their quality of life just as they are emerging from childhood into adulthood? We’ll never forget the anonymous young woman heard outside Catherine’s door in the pediatric ward in 2017: “My body’s broken!” she wailed. “I hate myself! I want to die!” What happened to her, to all of them?

We can acknowledge and even be thankful for the many nurses, social workers, and other staff who were kind and tried to do their best for Catherine. However, they worked within a mental health system that perpetuates flawed, outdated information and inures staff to iatrogenic harms.

In the aftermath of our family’s heartbreaking tragedy, two things sustain us. One is our belief that our daughter is with the Lord and that we will see her again after this life. The other is that as parents, we’ve found a calling: to expose the horrors of the current mental health system and to work to change this system for the better.

 

 

 

 

 

 

 

 

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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