I had my first hallucination at 17, when I was studying Spanish in the Dominican Republic. I was walking down the street, about a half-block behind an old lady with a cart, when I saw someone attack her with a piece of wood, cracking her skull open so her brains leaked onto the pavement. I can still remember the way it looked — the bone and blood and wet gray matter. The hallucination couldn’t have lasted more than a few seconds. Days later, I started seeing bugs — roaches. A colony of them seemed to be living in my mattress, moving around inside it, making so much noise they kept me awake. One night, I even saw a roach the size of a rabbit skitter past the dinner table. I didn’t say a word.
The hallucinations came and went for the next few years, as I finished college and my first year of graduate school. At the same time, my daily life got increasingly distorted, as though I was watching TV through mottled glass. By my second year of grad school, the distortion was continuous, and a chaotic battle raged inside my head; the noise and confusion were almost unbearable. I went through the motions, but my connection to reality was tenuous: I pictured myself as a helium balloon tied to a fence by a frayed piece of string. A strong breeze, and I’d float away for good.
For many of those years, I didn’t know what the word “psychotic” meant, or that it applied to me. I thought it described a person who wore foil hats and believed the CIA was following him, like John Nash in A Beautiful Mind. My psychosis had rougher contours, and no cinematic through-line. The only constant was the pain. I was finally admitted to a psychiatric facility after one particularly bad night in an emergency room where I cut curtains into ribbons and slashed a mattress with a knife I’d brought for protection — from what, I wasn’t sure. They quickly gave me Thorazine to ameliorate my agony, which I learned was psychosis, and the pills worked almost immediately, as though the burning knife of my pain had been dipped into cool water. The medication also sedated me so I was pliant and cow-like, which was just fine with me. I finally understood how the world might look without a frying pan clanging against my skull.
That was more than 20 years ago. Thorazine isn’t used as frequently today because of its side effects, most notably tardive dyskinesia (TD), which involves involuntary movements of the tongue, limbs, jaw or torso, like the incessant lip-smacking of the homeless woman I’d see on the bus as a kid. The drug had its heyday in the 1950s and early ’60s and since then has been unflatteringly memorialized in the phrase “Thorazine shuffle,” which became shorthand to describe the sedated, tremor-y walk of overmedicated psychiatric patients.
So though it worked in the moment, I couldn’t stay on Thorazine. And I didn’t have to: By the time I was diagnosed with bipolar disorder and prescribed antipsychotics for what I was told would be the rest of my life, there were alternatives — the so-called “atypical” or second-generation antipsychotics (SGAs). These were said to have a lesser incidence of TD as well as fewer other side effects — though you couldn’t prove it by me. Yes, Risperdal, Zyprexa and Seroquel quieted the noise inside my head, but the side effects were many and brutal. The weight gain was incredibly fast — I was 20 pounds heavier in a month. I was perennially congested and got addicted to nasal spray, which damaged my sinuses. I had to use fake saliva to manage my dry mouth. I suffered from constipation, headaches and mouth sores. I think the worst was when my bladder would freeze and I’d have to go to the ER to be catheterized. And did I mention I was tired? I was so, so, so tired. I took naps under my desk at work, curled on the floor with my coat as a blanket. It was like having the world’s longest hangover.
Such side effects from SGAs, I’d learn, weren’t unusual. When I worked in social services with people deemed “severely mentally ill,” I met many folks with these problems and a host of others, like diabetes and related metabolic issues. One woman needed a liver transplant. One guy, a Vietnam vet, wore loose clothing to disguise the fact that the drugs made him grow breasts.
At the same time, I saw remarkable transformations in people who were tortured by voices and delusions and then got clarity when they took the meds. Theirs was a compromised reality, yes, but for them — and for me — the decision to take the drugs seemed sort of like voting: picking the lesser of two evils. It’s a bit like getting chemo — miserable and toxic, but better than cancer.
The problem with the cancer analogy is this: Doctors don’t prescribe chemo for people who are cancer-free. So why are children without any hint of psychosis — in Philadelphia and around the country — being prescribed powerful antipsychotics at an alarming rate?
CHILDREN’S HOSPITAL OF PHILADELPHIA pediatrician David Rubin first began to wonder about the over-prescription of antipsychotic drugs in kids a few years ago when a four-year-old boy was brought to his office by a foster parent.
“He was really bright and loquacious,” remembers Rubin, the boyish and animated co-director of CHOP’s PolicyLab, an interdisciplinary research center that aims to shape child health-care policy. “If he didn’t like daycare, he would throw a Tonka truck at the teacher’s head. He knew that would get him put in the director’s office. He knew that violence and aggression would get a response.”
The little boy had recently been moved from a different foster home due to mysterious burns on his scalp. Now, the new foster parent was trying to figure out how to deal with the fact that the boy had been kicked out of multiple daycares. “A DHS health provider made the recommendation that the child needed to be on medication,” says Rubin. “We’re not just talking about a stimulant — the doctor was also initiating antipsychotics. And as a pediatrician, that just opened a Pandora’s box for me, because, like, are you kidding me? A four-year-old on antipsychotics?”
Rubin wondered if the recommendation for medication was less about treating an illness and more about forcing an unruly child into line. “Is this just a chemical restraint we’re trying to do on this child to keep him quiet in daycare?” he wondered. “And what’s the impact on the developing brain?”
The use of antipsychotics in children isn’t new. There are children who experience psychosis — whose attachment to an imaginary friend, say, indicates something more troubling than creative play. The drugs are generally approved for children and adolescents diagnosed with schizophrenia, some types of bipolar disorder, and irritability related to autism.
Despite increased sensitivity in the past 10 years or so to prescribing psychiatric medications to very young children, the use of antipsychotics among children and youth continues to rise. The New York Times recently reported that in 2014, almost 20,000 antipsychotic prescriptions were written for children two and younger — a 50 percent increase from 2013. Much of the time, children and adolescents get the drugs “off-label” — not for psychosis, but for more common problems like ADHD, for which the drugs are not approved. In fact, despite overheated media coverage of the dangers of drugging kids with stimulants like Ritalin, antipsychotic prescriptions for children and youths have grown at a greater rate than those for all other psych drugs, including stimulants. The most recently available numbers suggest that about 750,000 kids in the U.S. are on antipsychotics.
The phenomenon is particularly acute among society’s most vulnerable kids — those in foster care. As of 2009, Rutgers researchers discovered, 12.4 percent of foster kids were taking these sedating medications, compared with 1.4 percent of children who were on Medicaid but not in foster care and only one percent of kids with private insurance.
The problem, of course, is that while the drugs may be effective at controlling kids’ behavior, they potentially do so at a high cost to the kids. First are the side effects that I experienced and could barely manage as an adult — as well as the increased risk of major hormonal and metabolic changes like diabetes and obesity. Then there’s the fact that no one really knows the long-term effects of the drugs on the brain.
“Do they make people less aggressive? Yes, sometimes they do. Will they sedate people? Absolutely. Will they make kids easier to manage? They will,” says journalist Robert Whitaker, author of three books examining the history and practice of psychiatry. “But I know of no study that shows that medicating these kids long-term will help them grow up and thrive. The developing brain is a very delicate thing. The narrative is that these side effects are mild, and that’s just not true, and that the benefits are well-established, and so often they’re not.”
Though I knew children took psychotropic medication, I assumed they’d only get antipsychotics in dire circumstances. But in the past couple years, major news outlets have increasingly highlighted the surging use of antipsychotics in children without psychotic illness. Each headline I saw, each TV segment, stunned me. How could kids manage such harsh side effects? What would the drugs do to them as they grew up? The widespread use of the drugs among troubled children seemed both tragic and transparent, posing the obvious question: Are we helping these kids or just trying to get them to behave?
AS IT HAPPENS, Philadelphia is ground zero for much of the controversy around prescribing antipsychotics to children. For one thing, the groundbreaking research that has catalyzed media coverage and policy change has come out of CHOP’s PolicyLab. Additionally, Philadelphia is the center of a very high-profile legal battle against Johnson & Johnson, the maker of the SGA Risperdal. Hundreds of lawsuits are being brought by a Philadelphia lawyer in Philadelphia courtrooms on behalf of children who took Risperdal and then developed gynecomastia, or enlarged breast tissue in males. Last February, a Philadelphia jury awarded $2.5 million in damages to Austin Pledger, an autistic young man from Alabama who after years of treatment with Risperdal for his behavior problems developed size 46DD breasts. The cause of such breast growth, which is often irreversible, is the increase in the hormone prolactin.
I know something about elevated prolactin. When I was taking Risperdal, I missed several periods, and my body gave every indication I was pregnant — not welcome news at the time. When I saw my family doctor to confirm my suspicions, she first reviewed the meds I was taking. “Risperdal!” she said. “That’s it! Your body is mimicking pregnancy.”
I stopped taking the drug, and I stopped feeling pregnant. But young men like Austin Pledger aren’t so lucky; now in his 20s, he still hasn’t gotten a mastectomy. Pledger’s lawyer is Philadelphia-based Stephen Sheller, who’s been doing fierce battle with Johnson & Johnson on this issue for a decade. The 77-year-old Brooklyn native, who came to Philadelphia to go to Penn, is a legal Forrest Gump. He has represented Philadelphia’s Black Panthers during the Rizzo era, women who got cancer from the anti-miscarriage drug DES, patient families during deinstitutionalization, women who got faulty silicone breast implants, military victims of a defective Lyme disease vaccine, and workers with asbestos-related illness. He handled one of the first cases of equal pay for women. As if that isn’t enough, Sheller wound up filing the first lawsuit regarding the infamous Florida recount in the 2000 presidential election.
But all his high-profile experience couldn’t prepare him for what he witnessed with children and psychiatric drugs. The first time he saw gynecomastia for himself, he was shocked: “A mom comes into my office with a boy with these big breasts. What the hell is that?” Sheller has even had a couple cases, he says, in which boys grew third breasts.
Sheller’s pursuit of J&J was recently chronicled in Steven Brill’s 15-part series for Huffington Post Highline called “America’s Most Admired Lawbreaker.” The title refers to J&J’s current CEO, Alex Gorsky, who has come under increasing fire for his role in the company’s underhanded yet aggressive marketing of Risperdal for children. The series reads like a John Grisham novel, studded with damning emails and deeply cynical sales training manuals.
Johnson & Johnson has spent almost $3 billion to settle thousands of cases — both civil and criminal — involving promotion of Risperdal by Janssen, J&J’s pharmaceutical entity. But the company stands behind the drug: “The efficacy and safety of Risperdal for use in children and adolescents have been proven in multiple clinical trials,” says Janssen spokesperson Robyn Reed Frenze. “As recently as November 2014, the FDA stated that Risperdal is an important and beneficial therapeutic option for children and adolescents facing very challenging mental illnesses and neurodevelopmental disorders.” As for the Risperdal-related lawsuits, Frenze says, “Janssen will continue to defend itself in the ongoing litigation and will try cases where appropriate.”
At the moment, Steve Sheller estimates there are about 1,200 Risperdal lawsuits winding their way through Philadelphia courtrooms. In October, I went to City Hall to listen to some of the testimony, on a day when two Risperdal cases were being tried at the same time.
In one of the courtrooms, a 20-something man seated behind me was making a rhythmic kind of humming sound — not unpleasant, but noticeable. It turned out he was a plaintiff, and he has Tourette’s. Now a college senior, he’s already had a double mastectomy.
Sheller, his lawyer, isn’t opposed to using psychiatric medications in children, even antipsychotics. “There are times when you have kids who are very difficult,” he says. “You may have to calm them down, and I think there are plenty of medications that can do that, for a week, two weeks, that’s it. But never put them on Risperdal.” Sheller says he’s in the litigation against Janssen for the long haul: “I’m telling you, I will chew that bone forever. And then my daughters will chew it when I’m gone.”
SHELLER DOESN’T work much with kids in foster care, but if they had the financial wherewithal, he’d certainly have his hands full. According to CHOP’s David Rubin, “Fifty percent of the time that a clinician makes the decision to put a child who’s in foster care on a medication for a behavioral health issue, they include an antipsychotic.” Rubin isn’t saying such drugs never have a place in treatment. “But 50 percent of the time? That’s a ridiculous number.”
Various studies in the past five years offer more eye-popping numbers. Kids between the ages of 10 and 18 taking antipsychotics are 50 percent more likely to develop diabetes; the duration of antipsychotic use in foster kids is longer than it is for those not in foster care; white youths are 27 percent less likely than black youths to receive an antipsychotic in conjunction with another drug.
Given their disproportionate experiences of poverty, neglect and childhood trauma and years of bouncing from home to home, many foster children do have behavioral problems, and nuanced solutions for dealing with those issues can be limited. “Most of the clinicians I’ve talked to are really well-meaning, and they recognize that these medications work and are very powerful,” says Rubin. “They also recognize when they see a family in their office and the choice is the kid’s going to be thrown onto the street, go back to DHS or be thrown out of school.”
Doctors who work with foster kids may not have much time to generate more creative solutions. One Philadelphia-area social worker I spoke with, who didn’t want to be named, says, “These kids have a 15-minute [doctor’s] appointment every three months” — that’s it. She regularly sees children on antipsychotics who are overweight, blunted in affect and fatigued. She has even seen kids — both boys and girls — who lactate due to elevated prolactin. “They suffer from serious side effects, and no one is monitoring them.”
In Philadelphia, there are approximately 5,800 youths — infants to age 21 — in foster care, a number that skyrocketed in the wake of child-protection legislation that was passed following the Jerry Sandusky scandal. The average age of a foster child in Philadelphia is nine. DHS director of communications Alicia Taylor says the agency doesn’t have data on how many foster children receive behavioral health-care services. “However, it is safe to say that many of the children have experienced some level of trauma and are receiving behavioral health-care services,” she says.
The instability of a life in foster care — one that may lack a consistent foundational relationship with a relative — compounds kids’ problems. “When you have a child who is 12 or 13 years old who has been in 17 placements,” says David Rubin, “it gets very hard to reverse that cycle of trauma and separation and failed attachment.” If antipsychotics aren’t the answer, though, what might be?
MICHAEL PLACE IS a prominent foster-care advocate and graduate student who specializes in the issue of psychotropic medication in foster kids. Place grew up in foster care and started to take medication in his teens, including antipsychotics. They did nothing to help him. “I do believe kids in foster care sometimes suffer from mental illness,” he says. “But a lot of times when a kid is acting up, it’s just a reaction to trauma.”
Using pills to sedate a child with disruptive behavior often obscures the actual cause of the child’s distress, Place says. He gives the example of a foster kid who acts out after visits with his biological parents. That’s not about psychosis or mental illness — that’s an emotional reaction to deep hurt. Medication may interrupt the immediate behavior, but it doesn’t begin to address the pain the kids are in.
“What really helped was therapy,” Place says of his own experience. “I can see using medication initially in a really out-of-control situation. But then therapy should be available automatically.”
In Philadelphia, foster children do have access to psychotherapy, and there are organizations that provide it. But it’s not always easy to engage children and caregivers in such programs. What if, for example, a parent or caregiver has mental health issues herself? A lack of faith in the system may make parents wary, or they may not be able to take their children out of school and to therapy appointments during the day. “We’re talking about constraints that are so deep,” says PolicyLab’s Kathleen Noonan. “Is Au Bon Pain going to go to an hourly worker and say, ‘Yeah, you can go to your analyst every morning, that’s fine — we’ll pay you while you do that’? It’s really hard. Psychotherapy is considered a luxury.”
AS RESEARCH AND reports on antipsychotic overuse in children and the elderly accumulate, the issue is starting to be addressed. California is one state with pending legislation to curb antipsychotic overuse — action that was spurred in part by a deeply disturbing series, “Drugging Our Kids,” in the San Jose Mercury News. In Nevada, legislation has been passed to empower foster children’s right to refuse medication. Other states and welfare systems now mandate that doctors get authorization before prescribing an antipsychotic.
In 2014, the Commonwealth of Pennsylvania partnered with PolicyLab to analyze data on the use of psychotropic medication among Medicaid-enrolled kids ages three to 18, with a particular focus on those in foster care. The results followed national trends: Antipsychotic use was four times higher among foster children than among other Medicaid-enrolled kids. More than half the Medicaid-enrolled kids who took antipsychotics were diagnosed with ADHD.
In the wake of the study results, says PolicyLab’s Meredith Matone, the lead researcher on that study, Pennsylvania is at long last moving in the right direction, making significant changes in the way these drugs are approved and prescribed. But these are recent shifts, and progress is slow. Says Rubin, “If I were to tell you we brought the number of kids in foster care who get an antipsychotic from 50 percent to 40 percent, are you happy? Forty doesn’t feel good. Yeah, it’s progress, but are the kids any better?”
Rubin’s colleague Kathleen Noonan worries about the perception that there’s been progress on the issue. While states like California are going so far as to blacklist doctors who aren’t prescribing correctly, there’s a shortage of investment in other strategies. “What’s blacklisting going to do if there’s no alternative?” Noonan asks. Antipsychotic prescriptions go down overall, but individual kids are still troubled.
PolicyLab is working with the Children’s Bureau in Washington, D.C., among other entities, to figure out how to increase the availability of alternative treatments. One approach targets neighborhoods that deal with a lot of trauma. In Philadelphia, PolicyLab has piloted various programs in conjunction with Behavioral Health Rehabilitation Services and DHS. Even small changes can have big impacts. In one program, families spent just six hours in a classroom, learning about the causes and effects of trauma. Afterward, reports of behavioral problems for the children in the program were greatly reduced.
Sometimes, the solution is even simpler. David Rubin recalls a foster child about six years old who came to his pediatric practice and was totally out of control in the waiting room. His case manager was in tears. When Rubin examined the child, “He looked every bit the part of ADHD. He was running around, throwing things, turning on the water — it looked like this kid had really significant illness.”
But after the boy’s grandmother got custody and he’d been living with her for a few months, Rubin saw him again: “He was a completely different child. He wasn’t running around the room. You could see the attachment.” What this child needed wasn’t medication: “The treatment was reuniting him with his paternal grandmother.” Had this child been prescribed antipsychotics to control behavior that seemed pathological, he would have grappled with all the side effects and long-term implications — and for what?
I WAS ALWAYS a dutiful patient — what doctors call “compliant.” I took my medications because I wanted to get better, to get off of disability, to discover my better self. But then, about eight years ago, after almost two decades on antipsychotics, what wasn’t supposed to happen did happen: I started to have symptoms of a movement disorder.
I didn’t know what it was at first. I just noticed that about an hour after taking my pill at night, I’d start to feel the telltale nausea, then an indescribable sensation in my limbs. It wasn’t pain — it was more like my muscles were unhappy. I imagined my body as a child in formalwear, squirming in a seat at the orchestra. The only relief I got was from kicking my legs or walking around or bending over or shrugging or stretching.
When I finally told my doctor — who’s generally very Zen — I saw what looked like alarm on his face. “That’s akathisia. It’s from the antipsychotics,” he said. It appeared the pharmacological chickens had come home to roost. Time to let the SGAs go.
I’ve often asked myself if I took antipsychotics for the right reasons, and I think that for many years, I did. But I was also afraid not to take them. When my doctor told me to discontinue Seroquel, I went home and sobbed. I was sure I’d go completely mad again, that I’d lose my job, my home. But I tapered off the antipsychotic according to his instructions, and my world didn’t collapse. I was not, as I’d imagined, on the razor’s edge between sanity and madness, with just the Seroquel keeping me from falling. In fact, life without antipsychotics is better for me, which makes me think it could be better for these vulnerable children as well. That’s assuming, however, that they get the care they actually need and not the medication they don’t.
Published as “Mind Control” in the January 2016 issue of Philadelphia magazine.