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BAY AREA NEWS GROUP INVESTIGATIONCalifornia’s foster care system has become reliant on a convenient but risky practice to control thebehavior of thousands of troubled children — prescribing powerful psychotropic medications, manyof which have not been tested on youngsters. As one judge says: “We’re experimenting on our children.”

DRUGGING OUR KIDS

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Clockwisefrom top left,Mark Estrada,21; RochelleTrochtenberg,31; SadeDaniels, 26;and JoymaraColeman,24, all wereprescribedpsychotropicmedicationsduring theirtime in fostercare. Afterleaving thesystem at 18,Trochtenbergmade a list ofher 10 dailymedications,at top. Today,she doesn’ttake a singlepsychotropicmedication.

‘THE SYSTEM RELIES HEAVILY ON MEDICATION TO DO A JOB THAT PARENTS ARE SUPPOSED TO DO.’Sade Daniels, pictured top right, was on antidepressants and antipsychoticswhile in foster care. Even kids younger than 5 are prescribed drugs.

Adolescent foster kids inCalifornia are 3.5 times morelikely to be on psychotropic drugsthan all adolescents in the U.S.

FOSTER KIDS GIVENDRUGS AT HIGHER RATE

CALIFORNIA PRESCRIBESMORE POWERFUL DRUGS

72% Psychotropic drugs, which includeantipsychotic drugs (50%)

28% Other drugs

*Based on fee-for-service Medi-Cal records

Over the last decade, $313 million wasspent on the 10 most costly groupsof drugs for foster kids. Most of thefunds went to psychotropic drugs.*

22% Foster kids 12-18 in California*6% All kids 12-19 in the United States

Sources: Centers for Disease Control and Prevention, National Health andNutrition Examination Survey, California Department of Health Care Services

BAY AREA NEWS GROUP

VIDEOS ONLINE Photojournalist Dai Sugano traveled the state to capture theexperiences of former foster kids who were medicated while in the state’s care.View their stories and more on this project. MERCURYNEWS.COM/DRUGGEDKIDS

FOUR PAGES INSIDE An in-depth look at the numbers behind thisinvestigation; an outline of the types of psychotropic drugs given to children;a summary of the common side effects of these drugs. PAGES 16-19

KIDS OFTHE SYSTEM

They are wrenched from abusive homes, uprootedagain and again, often with their life’s belongings stuffedinto a trash bag.

Abandoned and alone, they are among California’smost powerless children. But instead of providing a sta-ble home and caring family, the state’s foster care sys-tem gives them a pill.

With alarming frequency, foster and health careproviders are turning to a risky but convenient remedyto control the behavior of thousands of troubled kids:numbing them with psychiatric drugs that are untestedon and often not approved for children.

An investigation by this newspaper found that nearly1 out of every 4 adolescents in California’s foster caresystem is receiving these drugs — 3 ½ times the rate forall adolescents nationwide. Over the last decade, almost15 percent of the state’s foster children of all ages wereprescribed the medications, known as psychotropics,part of a national treatment trend that is only beginningto receive broad scrutiny.

“We’re experimenting on our children,” said Los An-geles County Judge Michael Nash, who presides over thenation’s largest juvenile court.

A year of interviews with foster youth, caregivers, doc-tors, researchers and legal advocates uncovered how thelargest foster care system in the U.S. has grown depen-dent on quick-fix, taxpayer-funded, big-profit pharma-ceuticals — and how the state has done little to stop it.

“To be prescribing these medications so extensivelyand so, I think, thoughtlessly, with so little evidencesupporting their use, it’s just malpractice,” said GeorgeStewart, a Berkeley child psychiatrist who has treatedthe neediest foster children in the Bay Area for the past

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WEATHERPartly cloudyH: 76-83L: 58-61PAGE B16

By Thomas Peele, Robert Salongaand Daniel J. Willis

Staff writersAs the killing of an unarmed black

teen by a white cop roils predominantlyblack Ferguson, Missouri, one of thatcommunity’s challenges is replicatedeven in the highly diverse Bay Area:White police officers disproportionately

dominate in cities with large minoritypopulations.

More than 83 percent of larger citiesin the region have higher percentages ofwhite police officers than their percent-ages of white residents, according toU.S. Census estimates — sometimes bya staggering proportion.

“Race is the elephant in the room” of

policing, said LaDoris Cordell , a retiredSuperior Court judge who is San Jose’sindependent police auditor.

If an institution that wields power“is to have the respect of the people itserves, it must look like the people itserves,” said Cordell, who is black.

IN WAKE OF FERGUSON, IS RACE AN ISSUE IN BAY AREA?

When white officers dominate the police

See DRUGS, Page 16

Copyright 2014 San Jose Mercury News

SUBSCRIBE » 800-870-6397or www.mercurynews.com/subscriber-services

SAN JOSE MERCURY NEWS SUNDAY

A NEWSPAPER

—First in a series

See POLICE, Page 7

BAY AREA NEWS GROUP » 2.7 MILLION BAY AREA READERS IN PRINT AND ONLINE $1.50 100 AUGUST 24, 2014

Sunday

four decades. “It really is drugging them.”The state official who oversees foster care,

Department of Social Services Director WillLightbourne, concedes drugs are overused,but insists his department is wrapping its armsaround the problem: “There’s a lot of work to bedone here to make sure we do things right.”

No one doubts that foster children generallyhave greater mental health needs because of thetrauma they have suffered, and the temptationfor caregivers to fulfill those needs with drugscan be strong. In the short term, psychotropicscan calm volatile moods and make aggressivechildren more docile.

But there is substantial evidence of many ofthe drugs’ dramatic side effects: rapid-onsetobesity, diabetes and a lethargy so profoundthat foster kids describe dozing through schooland much of their young lives. Long-term ef-fects, particularly on children, have receivedlittle study, but for some psychotropics thereis evidence of persistent tics, increased risk ofsuicide, even brain shrinkage.

Sade Daniels, of Hayward, became so over-weight in her teens that at age 26 her bathroommirror still taunts and embarrasses her. MarkEstrada, a 21-year-old from Anaheim, said hefelt too “zoned out” to focus on high school andso groggy he was cut from his varsity basketballteam.

And Rochelle Trochtenberg, now 31 and liv-ing in Eureka, still struggles to bring a glass toher lips because her hands are so shaky from theyears she spent on a shifting mix of lithium, De-pakote, Zyprexa, Haldol and Prozac, among oth-ers. When people ask, she tries to cover it up withremarks about a possible hereditary condition.

The truth is too painful to explain, she said. “Idon’t want to tell people I have a tremor becauseI was drugged for my whole adolescence.”

Questionable prescribing revealedDespite the concerns, state officials have

been slow to even reveal foster care prescribingpatterns in California. This newspaper and itslawyers spent nine months negotiating with theDepartment of Health Care Services for datathat is public under state and federal law, aslong as individuals cannot be identified.

The 10 years of data begins in 2004 and —even though the state continues to resist manyof this newspaper’s requests — provides themost comprehensive look yet at psychotropicmedication use on California’s foster kids. Thenewspaper also interviewed more than 175 peo-ple, including more than 30 current and formerfoster youth throughout the state.

The findings, which will be examined hereand in future stories, include:

GROWING USE OF ANTIPSYCHOTICS TOTREAT BAD BEHAVIOR: Of the tens of thou-sands of foster children placed on psychotropicdrugs over the past 10 years, nearly 60 percentwere prescribed an antipsychotic, the classof psychotropic medications with the highestrisks. That figure stunned experts in the fieldand alarmed officials who oversee the state’sfoster care system. The Food and Drug Admin-

istration authorizes antipsychotics for childrenonly in cases of severe mental illness, but evi-dence suggests doctors often prescribe them toCalifornia foster children for behavior problems— a legal but controversial practice that criticssay should be limited.

MULTIPLE PSYCH MEDS COMMON BUTDANGEROUS: In many cases, doctors piled onprescriptions: 12.2 percent of California fosterchildren who received a psych drug in 2013were prescribed two, three, four or more psy-chotropic medications at a time — up from10.1 percent in 2004. These drug combinationsoften fall in uncharted medical territory, withno scientific evidence that young brains aren’tbeing harmed.

PSYCH MEDS THE NORM IN GROUP HOMESFOR TROUBLED KIDS: More than half of thefoster kids who live in California’s residentialgroup homes — and as many as 100 percent insome counties with very small numbers in grouphomes — are authorized by juvenile courts toreceive psychotropic drugs. These homes shel-ter some of the most troubled foster kids, about3,800 annually, many of whom the system hasbeen unable to place with families. Health careprofessionals say children are being medicatedto sleep to keep them manageable. In these grouphomes, foster children who refuse medicationsare often punished, losing basic privileges suchas visiting siblings or simply going outdoors.

VERY YOUNG KIDS ALSO MEDICATED: Hun-dreds of foster children 5 and younger havebeen prescribed psychotropics, although fed-eral health officials say the drugs are not safefor the very young and other states actively dis-courage the practice. In California in the last 10years, an average of at least 275 of these veryyoung children each year have been prescribedpsych medications.

DRUGGING OUR KIDS Story by Karen de Sá Photographs by Dai Sugano

Drugs’ effects onkids not understood

HIGH COST TO KIDS, AND TAXPAYERS: Cali-fornia spends more on psych drugs for fosterchildren than on any other kind of medication.This newspaper analyzed Medi-Cal spending onthe 10 most costly groups of drugs for foster kidsover the last decade. The state shelled out morethan $226 million on psych meds for foster chil-dren — an astounding 72 percent of the total.

ILLEGAL MARKETING DRIVES SALES: Com-pany documents show how drug manufacturersmisrepresented scientific evidence to maximizethe national market for the antipsychotics thatare the top five such drugs prescribed to Cali-fornia foster children. The companies eventu-ally agreed to $4.6 billion in settlements withfederal prosecutors. Lawsuits revealed thatsome of the companies’ sales reps pitched doc-tors to broaden the use of their drugs amongchildren while downplaying side effects, such asmassive weight gain and breast growth in boys.Eli Lilly, for example, advised its sales force:“The competition wins if we are distracted intotalking about diabetes.”

STATE IS SLOW TO ACT: California has donelittle to address psychotropic drug use amongfoster children. Three years ago, the federalgovernment called on states to develop plansto monitor the use of psychotropic medicationsprescribed to foster youth. Many states, includ-ing Illinois, Texas and New York, have formalplans. Yet California, with more than 60,000foster children, has a target date for its policy ofno sooner than 2016.

State says it’s hard at workOfficials with the Department of Social Ser-

vices say they are working hard on improve-ments. Two years ago, they assembled state-wide experts to act on the federal mandate, andthey say that group is making good progress.

Lightbourne said the real story behind thenumbers is more positive: As the state’s fostercare population plunged in the past 10 years— part of a national trend to keep families in-tact — so has the total number of foster youthprescribed psych medications, dropping bythousands of kids.

In a sharp defense of his department’s over-sight, Lightbourne insisted those numbers rep-resent progress, even though the percentageof foster children on psych meds has remainedroughly the same — ranging from 14 to 16 per-cent annually — for the past decade.

“Clearly there are some situations in whichpsychotropic prescriptions may be appropri-ate,” Lightbourne said. “We have to know thatsomething is being done because it’s absolutelynecessary, not because it’s convenient — thatit’s not simply behavior management.

“There are things that are much better han-dled through therapies,” he said. “Psychotro-pics should be the end, not the start.”

Many on the front lines, however, defendthe prescribing, saying the risks are weighedagainst the benefits and that there are oftenno alternatives to treating kids with such deepemotional scars. Foster parents and grouphome directors tend to cast out kids with themost anti-social behaviors, and no one wantsthem to end up in juvenile halls, psych wards or

STEP ONE

A foster parent,relative caregiver orgroup home staffmember takes achild to a physicianor psychiatrist.Some group homescontract their owndoctors or go topublic health clinics.

STEP TWO

Doctor or nursepractitionerexamines thechild and decideswhether medicationis needed.

STEP THREE

If a psychotropicmedication isprescribed, a caseworker petitionsthe juvenile courtfor authorization.Prescribingantipsychotics fora child 5 or youngerrequires additionaldocumentationon the part ofthe prescriber.

STEP FOUR

Judge or judicialofficer approvesprescription, andcaregiver picksup the medication.Medi-Cal, the state’spublic health system,pays the costs.

HOW PRESCRIBINGHAPPENS INFOSTER CARE

‘THERE ARE THINGSTHAT ARE MUCHBETTER HANDLEDTHROUGH THERAPIES.PSYCHOTROPICSSHOULD BE THE END,NOT THE START.’

Will Lightbourne, above, the state official whooversees foster care as Department of SocialServices director, concedes drugs are overusedbut says his department is working on the issue.

Joymara Coleman says the psychotropic medications she took as a foster youth left her feeling “spaced out” and exhausted: “When I was on the medication I just didn’t act like Joy.”

DrugsContinued from Page 1

See DRUGS, Page 17

A16 BAY AREA NEWS GROUP 111 SUNDAY, AUGUST 24, 2014

treatment facilities.“The goal is to deinstitutionalize the child so

he can live safely in the community,” said thera-pist Randall Ramirez, director of behavioralhealth for San Jose-based residential treatmentprovider Unity Care Group. “If one of the draw-backs is they have to be medicated because wedon’t want to raise kids in orphanages, that’sthe trade-off.”

To be sure, California is not alone in itsquestionably high prescribing rates. Growingevidence has revealed alarming rates of psycho-tropic medication use on foster youth across thecountry, and particularly antipsychotics. Thenumbers are difficult to compare from state tostate because of differences in methodology,but one recent survey found that in 2009, somestates, including Texas, Colorado and Missouri,prescribed antipsychotics at an even higherrate than California.

Overuse concerns date back decadesThe state has known about the overuse of

psychotropic medication on foster children foryears. Legislators first tried in 1999 to addressthe concerns, passing a law that made Califor-nia the only state requiring juvenile courts toapprove all psych med prescriptions, with re-views every 180 days.

But this newspaper’s analysis of a decade ofprescribing data shows the court oversight hasdone nothing on a statewide level to lower pre-scribing rates. A UCLA study in 1998, cited inthe legislation, found that 13 percent of school-age foster children in Los Angeles were re-ceiving psychotropic medications. While thestate failed to provide data that would allow anupdated look at Los Angeles school kids, thisnewspaper’s study revealed high prescribingrates have persisted statewide for all foster kidsand all age groups.

“I don’t think there’s one substantive thingthat we can point to that has ensured that fosterchildren in California today are only receivingpsychotropic medications appropriately,” saidBill Grimm, an attorney with the Oakland-basedNational Center for Youth Law.

Grimm’s organization is a central part ofthe state effort — along with public healthnurses, state pharmacists and child welfaredirectors — to comply with the federal man-date to better monitor psychotropic medica-tions. But he is frustrated that the group hasbeen meeting for two years without produc-ing any reports or policy recommendations,and said it has been hamstrung in part by thestate’s refusal to provide good data on pre-scribing patterns.

Doctors’ orders rarely questioned

A foster child’s path to psych medication canbegin innocently enough — for example, whena child can’t sit still in class and receives an at-tention-deficit diagnosis and a prescription forstimulants. But like so many other painful expe-riences in these children’s lives, the drugs areoften ramped up during a crisis.

Sometimes, kids end up in the hospital afterharming themselves or threatening suicide.Often, though, the prescriptions for strongerdrugs come after a child lashes out.

In dozens of interviews with this newspaper,foster youth freely recounted their rash behav-ior, which they attributed to anger and frustra-tion: They broke furniture, punched people ortrashed their rooms. Sade Daniels, the Haywardresident, said she threw a chair at a teacherwho had deeply humiliated her — and betrayedher confidence — by telling the class she was infoster care.

Mark Estrada, the former Orange Countyfoster youth, depressed and defiant in his lateteens after being separated from his siblings,said he had his behavior subdued by the anti-psychotic Seroquel, which is approved only formanic episodes associated with bipolar disorderand schizophrenia.

“They’d make me take it anytime I’d have atantrum or felt rebellious,” Estrada said. “I feltlike I was being controlled. They gave it to me inthe morning, and I’d fall asleep all day.”

A juvenile court authorizes each prescrip-tion, but the forms the courts use often lackcritical details and a doctor’s expertise is rarelyquestioned. Nash, the Los Angeles judge, ac-knowledges the resulting challenges — even inLos Angeles, where mental health experts nowreview all applications for prescriptions and in2013 officials created protocols to curb prescrib-ing of multiple psych meds.

“The last time I looked around, there aren’ttoo many psychiatrists or psychologists on thebench,” the judge said. “So how in the heck are weable to make good decisions about these meds?”

How overprescribing happensThe progression from medication to over-

medication is also surprisingly routine, saidchild psychiatrist Tony Stanton.

At first, psych medications can stabilizemoods and dangerous behaviors. Yet once theimmediate crisis is over, foster children oftenremain on a high-dose pharmaceutical coursethat future doctors are reluctant to reverse.

The drugs “might stun them for a while,”said Stanton, who treated Bay Area foster chil-dren for 24 years. “But after two or three weeksthey’d stop working.”

Then, if the child seems depressed, they addan antidepressant. “And when that got worse,they’d change the diagnosis — they’d say it’s ac-

tually bipolar,” Stanton said. “Then, if they saidthey heard a voice telling them they were bador something, then they’d say: ‘Oh, they’re psy-chotic.’ Then an antipsychotic would be added.”

Aggressive behavior? A second antipsy-chotic may get added to the mix.

“Usually in my report I’d say, if in fact any ofthis had been successful, the child should not bein our care,” said Stanton, whose San Leandrogroup home typically received the most diffi-cult-to-place foster children. “So I think we cansafely say this does not work.”

Stanton’s reports in recently published ar-ticles summing up his work with 450 childrenages 5 through 13 are startling: Most childrenarrived at residential homes run by the SenecaCenter for Children and Families on at leastfour or five — and as many as eight or nine— different psychotropic medications. One 9-year-old shuffled into a Seneca home on a medi-cation dose that was 10 times the amount rec-ommended for a psychotic adult.

“It’s a story I’ve gotten used to,” said RobinRandall, medical director of San Francisco’sEdgewood Center for Children and Families,which also offers residential treatment pro-grams for troubled foster youth. “I used to saywhen I saw kids walk in on eight or nine differ-ent medications that I was shocked and appalled— now I’m just appalled.”

Randall said children “stay on the meds forreasons that are not necessarily heinous. It’s notthat doctors want to get kids on a ton of meds.They’re putting out fires, and not allowed thetime. The system is set up in a way that every-one is adding, adding, adding, and doesn’t allowfor a space to safely take them off.”

‘I wanted to take the pill’When a psychiatrist told Joymara Coleman

that medication could help her enjoy life more,“it sounded like magic to me at first, honestly.”

She had been searching for some peace aftera decade in and out of foster care in AlamedaCounty.

“It was pretty clear that I was depressed be-cause of all the things that I went through,” saidColeman, now 24 and a senior studying sociol-ogy at Cal State East Bay. “I was in the fostercare system with folks who weren’t very lov-ing. I had a lot of things I needed to heal from— from losing my mom, losing my siblings, fromwitnessing my mom smoking crack. I was de-pressed because my father was incarcerated.”

Coleman had seen her roommate in a homefor troubled teens wet the bed while on themedications, and she surely didn’t want that.“But after experiencing so much tragedy andso much confusion and chaos in my life, whenthe psychiatrist told me that it would make mehappy, I wanted to take the pill.”

DRUGGING OUR KIDS Story by Karen de Sá Photographs by Dai Sugano

‘IF ONE OF THEDRAWBACKS ISTHEY HAVE TOBE MEDICATEDBECAUSE WEDON’T WANT TORAISE KIDS INORPHANAGES,THAT’S THETRADE-OFF.’Therapist RandallRamirez, directorof behavioral healthfor San Jose-based residentialtreatment providerUnity Care Group,who says the goalis to allow childrento live safely in thecommunity

Rochelle Trochtenberg says her hands shake after years of taking psychotropic drugs. She tells others it may be a hereditary condition because the truth is too painful.

HOW CALIFORNIA DRUGS ITS FOSTER KIDS

’04 ’06 ’08 ’10 ’12 ’13 ’04 ’06 ’08 ’10 ’12 ’13’04 ’05 ’‘06 ’07 ’08 ’09 ’10 ’11 ’12 ’13

55,379

12.2%

7,630(14%)

GenderMale

Female

EthnicityWhiteBlackLatinoOther

AgeUnder 12

12-18

17.5%11.5

17.015.6

10.411.9

6.222.1

On one of the five most-prescribedantipsychotics

On otherpsychotropicdrugs

Total on psychotropic drugs

KARLKAHLER/BAYAREANEWS GROUP

The number of children in California's foster care system has plunged over the past decade, but the percentage of foster youth on psychotropic drugs has remained roughly the same.

0

20,000

40,000

60,000

80,000

100,000

120,000

12% 500

400

300

200

100

0

9

6

3

0

Data are for foster children who received prescriptions through fee-for-service Medi-Cal, the state's public health program for the poor. These numbers are declining as family unification eOorts shrink the size of the foster care population and some foster children are moved to managed care health plans; the state could not produce reliable prescription data for the latter.

Demographics Antipsychotics Multiple drugs The youngest kidsOf the foster children inCalifornia who receivepsychotropic medications, alarge percentage are on the strongest class of drugs, known as antipsychotics — even if they're younger than 12.

Out of all foster kids on psychotropic drugs, asignificant percentage is taking two or more, although research is lacking on the safety oreScacy of multiplemedications.

The number of foster kids 5 and younger* who receivepsychotropic drugs dropped along with the overall fostercare population, but remains aconcern to experts worried about developing brains.

Ages 0-11 Ages 12-18

48% 62%

Source: Bay Area News Group analysis of data provided by the California Department of Health Care Services

*Includes some foster kids in managed care health plans

Psychotropic drugs areprescribed most often for whites, males and childrenolder than 12. Percentage offoster kids on such drugs(10-year average):

Total foster children on fee-for-service Medi-Cal

DEMOGRAPHICS ANTIPSYCHOTICS MULTIPLE DRUGS THE YOUNGEST KIDS

The rampant drug-ging of California’sfoster children is ahorror. Waiting forholistic change isplain wrong. PAGE 14

EDITORIAL:END THIS OUTRAGEIMMEDIATELY

DrugsContinued from Page 16

See DRUGS, Page 19

111 BAY AREA NEWS GROUP A17SUNDAY, AUGUST 24, 2014

Here are some of the main types of psychotropic drugs prescribed for treatingmental illness — and often behavior issues — in foster children in California.

PSYCHOTROPIC DRUGS GIVEN TO FOSTER KIDS

DRUGGING OUR KIDS Story by Karen de Sá Photographs by Dai Sugano

ANTIPSYCHOTICS

Examples:Abilify, Risperdal,Seroquel, Zyprexa

FDA-approvedfor children with:Schizophrenia,bipolar disorder,autism with irritability

Other “off-label”uses: Sometimesprescribed forbehavior issues inchildren who arenot psychotic

Some possibleside effects: Weightgain, involuntaryrepetitive movements,sedation, diabetes

ANTIDEPRESSANTS

Examples: Prozac,Zoloft, Paxil, Lexapro

FDA-approved forchildren with:Major depressionand obsessive-compulsive disorder

Other “off-label”uses: Certain drugsapproved only foradults are sometimesgiven to children

Some possibleside effects:Headaches, agitation,nervousness, appetiteloss, suicidality

BY KAREN DE SÁkdesa@mercurynews.com

When federal regulators determine that amedication is safe and effective, they assure thepublic with the FDA stamp of approval on thebottle’s label.

But doctors who treat troubled fosterchildren often turn to a legal but worrisomepractice: prescribing powerful antipsychoticmedications for conditions and age groups noregulator has blessed.

Drug companies are prohibited from pro-moting their medications for so-called “off-label” uses, but the law allows doctors to pre-scribe them for conditions that aren’t approvedby the Food and Drug Administration. Whenthe patients are children, however, the risks ofsuch prescribing are magnified: Their brainsare still developing, and debilitating side effectscan have lifelong consequences.

“Whenever you prescribe medication, youhave to ask yourself: Do the benefits outweighthe risks?” said George Fouras, a San Franciscochild psychiatrist who specializ es in foster care.“That always has to weigh heavy on our minds.Do you want to expose somebody to very seri-ous side effects if there are other alternatives?”

Off-label prescribing can be lifesaving insome cases, and the process is widely used totreat cancer and rare diseases. Fouras said doc-tors base their decisions to write such prescrip-tions on their own patients’ outcomes and pub-lished reports of case studies.

But one doctor’s comfort level is another’s con-cern. Menlo Park child psychiatrist David Arre-dondo said he believes many doctors are too com-fortable prescribing antipsychotics to children.

Unless a child has “a major, major psychiatricillness, I don’t think we have any business doingthat to a developing child’s brain,” he said. “It’stoo risky.”

For children, the FDA has approved anti-psychotics only to treat schizophrenia, bipolardisorder and severe autism — serious mentalhealth conditions found in just 1 to 2 percent ofthe child population. But University of Marylandprofessor of pharmacy and psychiatry Julie Zitohas found that the drugs often are prescribedoff-label to control children’s behavior.

In a rare look at diagnoses of children cov-ered by Medi-Cal, California’s public healthsystem, Zito found that almost one-half of the

antipsychotics used were off-label and abouta third were for behavior problems such asADHD, “conduct disorder” or “oppositional de-fiant disorder.” Her yet-to-be-published studyfound that in 2009 there was an 18-fold greateruse of antipsychotics on foster children thanon non-foster kids receiving Medi-Cal becauseof their families’ income levels. These findingswere presented to the FDA in April.

There is no research on the effects of psycho-tropic medication on children’s brains , but thereis cause for alarm in the research on adults. Ina widely cited study published last year, Univer-sity of Iowa neuroscientist Nancy Andreasen ex-amined MRI images of 211 schizophrenic adultsand determined that chronic use of antipsychot-ics, not the illness, caused “smaller brain tissuevolumes.” Other side effects of the drugs , suchas rapid weight gain and diabetes risk, are well-documented.

In a 2009 study published in JAMA Psy-chiatry , children on antipsychotics added up to15 percent of their body weight in less than twoweeks . Every one of the study’s 257 participantsgained weight.

The studies only verify what doctors such aslongtime child psychiatrist Glen Elliott alreadyknow. He routinely sees it in his exam room atthe Children’s Health Council in Palo Alto. To thedoctor’s shock, a new patient, a 5-year-old boy,came to him after ballooning — in six months— from normal weight to morbidly obese.

Elliott said he and other doctors have beenstunned and saddened to learn how often anti-psychotic drug use in children results in obesity.In his young patient’s case, “the saddest thingwas, his behavior was no worse off the medicinethan it was on the medicine.”

‘Do benefits outweigh the risks?’

Bay Area News Group

Alarm over psychotropic drug use on fosterchildren has been growing across the countryfor years, but understanding the scope of theproblem in California required months of nego-tiations with the state just to take a closer look.

The result is an unprecedented review of adecade of prescribing data from the state’s fos-ter care system that begins an ongoing investi-gation called “Drugging Our Kids.”

HOW WE ANALYZED THE PROBLEM: Fostercare prescribing patterns are best tracked byreviewing what the state calls “pharmacy bene-fit claims” billed to Medi-Cal, the state’s publiclyfunded health system, which pays drug costs forCalifornia foster children. While an individual’shealth records are private, much of the infor-mation in the pharmacy claims is public understate and federal law.

In October, staff writer Karen de Sá filed aCalifornia Public Records Act request for 10years of those claims, stripped of any informa-tion that would identify individuals.

WHAT WE REQUESTED: This newspapersought raw data that would allow it to analyzethe number of foster children receiving psycho-tropic drugs, with breakdowns on age, gender,ethnicity, geography and type of residence. Therequest also asked for data to provide a windowinto what experts consider a disturbing trend:the number of children who received multiplepsych meds, and the number who received the

potent class of drugs known as antipsychotics.

THE STATE’S RESPONSE: The state Depart-ment of Health Care Services, insisting even“de-identified” data could be used to identifyindividuals, refused the newspaper’s requestfor raw data and then twice provided aggregatedata that was either incomplete or inaccurate.By late July, after nine months of negotiations,the state delivered aggregate data coveringthe fiscal years 2004-05 through 2013-14 thatallowed for limited analysis. The newspaper’snews research director , Leigh Poitinger, con-ducted that analysis.

The newspaper and its lawyers continue tofight for parts of the original request.

Other groups that have sought prescribingdata from the state have encountered similar re-sistance. Members of a state task force consider-ing new safeguards for foster children say theirwork has been hampered because they can’t getdata to understand the specific problems.

CALIFORNIA’STRACKING PROBLEM: The statewas able to provide accurate prescription dataonly for foster children covered by traditionalMedi-Cal. But over the last decade, many coun-ties have begun shifting their foster childrento managed health care plans. By 2014, about38 percent of foster children were covered bymanaged care plans.

Those children are not reflected in the num-bers the state provided to the newspaper be-cause the state could not vouch for the accuracy

How we acquired and analyzed a decade of state dataof that data. In reality, there are certainly morefoster children receiving psych meds than arereflected in the analysis, so the newspaper usedpercentages — instead of overall numbers ofchildren — to describe the trends.

WHY IT’S HARD TO COMPARE STUDIES:Other studies on foster youth are limited to chil-dren who are in foster care a minimum of sixmonths.

The state used that methodology in a 2010-11report to the federal government that showed asmany as 19.2 percent of California foster childrenin that year received psychotropic medications.

By comparison, the data the state provided tothe newspaper for the same fiscal year showed14.7 percent of foster children on psych meds.

That’s because that data looked at every fos-ter child covered by Medi-Cal (but not in man-aged care) over the 10-year period — even oneswho were only briefly in foster care.

While the newspaper’s analysis provides acomprehensive view of the state’s prescribingpatterns over time, experts say data using thismethodology — which was suggested by thestate — likely reflects a lower rate of prescrib-ing than is actually occurring.

David Grant is an expert in population healthsurveys who directs the California Health Inter-view Survey for the UCLA Center on HealthPolicy Research. “You may have a lot of peopleshowing up in there,” Grant said, “that nevereven have a chance to obtain a prescription dur-ing their time in foster care.”

While thenewspaper’sanalysis providesa comprehensiveview of the state’sprescribing patternsover time, expertssay data usingthis methodologylikely reflect a lowerrate of prescribingthan is actuallyoccurring.

PRESCRIPTIONFIGURES LIKELYEVEN HIGHER

MOOD STABILIZERS

Examples:Lithium,Depakote

FDA-approvedfor children with:Symptoms of bipolardisorder, includingalternating euphoriaand depression

Other “off-label”uses: Sometimesprescribed foraggressive behavior,emotional problems

Some possibleside effects:Weight gain, tremors,nausea, appetitedisturbance, seizures

STIMULANTS

Examples:Ritalin, Concerta,Adderall, Dexedrine

FDA-approvedfor children with:Attention deficithyperactivity disorder,narcolepsy, exogenousobesity in kids

Other “off-label”uses: Generallyprescribed forapproved uses

Some possibleside effects: Moodswings, tics, decreasedappetite, insomnia

Mark Estrada,of Anaheim, saysthe psychotropicmedication hetook while in fostercare made him feeltoo “zoned out”to concentrate onhis high schoolclasses. He alsowas cut from thevarsity basketballteam because of hisgrogginess.“They’dmake me take itanytime I’d havea tantrum or feltrebellious. … Theygave it to me in themorning, andI’d fall asleep allday,” he says.

A foster care report from 2000 shows a list ofmed ications that Rochelle Trochtenberg was taking.

Abilify

Prozac

Lithium

Ritalin

JEFF DURHAM/STAFF ILLUSTRATIONS

A18 BAY AREA NEWS GROUP 111 SUNDAY, AUGUST 24, 2014

DRUGGING OUR KIDS Story by Karen de Sá Photographs by Dai Sugano

Sade Daniels keeps the number 255 on her bathroom mirror as a reminder of the weight problems she has battled from the time she was on psychotropic medication.

She was 17 when a doctor prescribed the an-tidepressant Prozac for depression and panic at-tacks, but the list of medications grew to a seriesof overlapping trials of psych meds, according tocourt records she shared with a reporter: Therewere antipsychotics Risperdal and Abilify andmood stabilizers such as Depakote and lithium.

Court files show that when Coleman was 18,she “was put on 300 mg of lithium to help hercontrol her anger; however, it was stopped af-ter client felt dizzy and nauseous.” Psychiatristswho reviewed that diagnosis for this newspa-per called it disturbing that lithium, a powerfultreatment for bipolar disorder, would be pre-scribed for anger management.

The cocktail of drugs left her exhausted and“spaced out,” dulling her spunky personality.“When I was on the medication I just didn’t actlike Joy,” she said.

She said her nurse practitioner seemed toreally care about her. But when the self-con-scious teen complained about weight gain —she added 35 pounds to her 4-foot-8-inch frame— the nurse simply encouraged her to avoidsugary drinks.

“They were really adamant,” Coleman said ofher case workers’ insistence that she take medi-cations. “Initially I bought into it, that I neededthis because these are professionals — these areall white professionals, with degrees and they’reolder and they’re telling me that something’swrong with me, and they just know this.”

‘It’s the behaviors they want treated’From all quarters, the pressure in favor of

the drugs can be intense.Estrada recalls the consequences at his

group home when he refused to take his Sero-quel: He couldn’t go on field trips, play videogames, watch TV or go outside.

But the pressure starts elsewhere, said long-time public health nurse Carol Brown, with thecaregivers struggling to control troubled kids.Many of those caregivers are loving and com-mitted, genuinely trying to do the right thing;others are simply overwhelmed.

“Very often, there’s pressure on the doctorsfrom the foster parents and the group homes toprovide medication to deal with the behaviorsthat the foster youth are exhibiting,” Brownsaid. “The foster parents won’t take the kidswith the behaviors, and it’s the behaviors theywant treated.”

Child psychiatrist Edgardo Tolentino, a doc-tor with Pathways to Wellness, a medicationclinic that serves foster children in Alamedaand Contra Costa counties, conceded he has feltthat same pressure from caregivers.

“The expectation is that they’ll be givensome type of medication,” he said. “If they arealready on medications, the only thing I can dois continue them.”

Psych meds indispensable for somePressure or no, many who are part of the sys-

tem — while insisting they avoid overmedicat-ing kids — say some use of drugs is essential.

“I wouldn’t want people to think as caregiv-ers we are medicating them so they are coma-tose, or putting them to sleep so we don’t haveto deal with them,” said Barbara Leiner, whofostered more than 300 children in Los AngelesCounty over 24 years and runs online trainingforums for foster parents. On the contrary, shesaid, in her experience medications benefited asignificant number of her children.

“They’re better in control of their behaviors.

When they’re not on psychotropic drugs, theyhave a tough time in school, the other kids don’tlike them, they’re out of control.”

Psychiatrists concerned about overprescrib-ing acknowledge there are legitimate reasonsfor some children to take psychotropic medica-tions, and even the riskiest drugs can be lifesav-ing for the small sliver of kids with psychosesthat are clearly diagnosed. Studies show that’sno more than 1 to 2 percent of children, depend-ing on the illness.

Marjorie, an Oakland special-educationteacher who uses only her first name, adoptedtwo of her students from the foster care systemand said antipsychotics have been indispens-able in their care.

The two boys, Jakeel, 18, and Smith, 11, takeone antipsychotic medication daily to treat symp-toms of severe autism. Off the meds, Jakeel triedto leap out of a moving car because he didn’t get atoy he wanted. Smith killed a family pet and oncetried to climb out a third-story window.

“He talks about the ants in his head withoutthe Abilify,” said Marjorie, who approaches hermothering with a cheerful practicality. “So Isay, ‘OK, we don’t want ants in your head!’ ”

Still, when her sons first came to live withher, Marjorie quickly discovered they were onmore medications while they were in foster carethan she felt were necessary. So she lowered thedosages and limited the multiple antipsychoticsto just one.

That kind of attention can be lacking in thefoster care system, and that adds another layerof concern for often-displaced kids on suchpowerful drugs. More than 60 percent of thechildren who have been in foster care at leasttwo years have moved two or more times in thesystem.

So even their prescribers — who may be pri-vate practitioners or work at public clinics — of-ten know little about them or their family histo-ries when they meet during office visits. JudgeNash recently reviewed 150 requests for medi-cation in the Los Angeles juvenile court and saidhe found cases in which doctors prescribed withno medical records or drug history.

The dangers are real. For example, some an-tidepressants carry a “black box label” proclaim-ing a high suicide risk for young patients. TheFDA advises that children be closely monitoredfor worsening depression and sleeplessness. Yetfor foster kids without parents, the medicationsare often prescribed even when a watchful eye isabsent, said attorney Jennifer Rodriguez, a for-mer foster youth who is now executive directorof the San Francisco-based Youth Law Center.

“As a parent, when your child goes on some-thing that’s dangerous, the most dangerousdrugs that are out there,” she said, “your doctor

is relying on you — someone who knows thatchild, who watches over time.”

‘Treatment for a broken heart’Many of the foster youth interviewed for this

story shared another theme: There was no needfor medication when they got the emotionalsupport they needed all along. Often it was anadult who vowed to stick by them no matterwhat — a long-lost relative, a teacher, a volun-teer advocate, an exceptionally devoted nurse,or the foster parent who seemed to see throughthe raucous behaviors to the kid inside.

Those key relationships — not medications— are what most helped them eventually calmdown and start to feel better, the youth said.

“I cannot count the number of times I haveseen children on multiple medications who arereally suffering from a broken heart,” said MenloPark child psychiatrist David Arredondo, whohas worked with foster youth for 30 years. “Andthe treatment for a broken heart is not anothermedication.”

Today, Rochelle Trochtenberg doesn’t takea single psychotropic medication. She workswith troubled youth in Humboldt County and isworking on a master’s degree in social work.

But in foster care in Los Angeles, she was di-agnosed with a host of mental illnesses, includ-ing bipolar, schizoaffective and post-traumaticstress disorders, major depression and bulimia.

“They attach all these labels to you in fostercare,” she said, “but the bottom line is I comefrom a home where physical and sexual abusewere my daily norm, where I lived in fear ev-ery day, where I felt responsible to protect myyounger sister from the abuse.”

Trochtenberg knew she needed help with de-pression at age 13, when she was removed fromher family home in Los Angeles. After sufferingyears of physical and sexual abuse that droveher to attempt suicide in the seventh grade, shewas grateful when social workers rescued her.

Yet while the state freed her from one type ofabuse, it delivered her into a life of so many tempo-rary homes and psych meds that she lost count.

When she aged out of foster care with a listof 10 medications and nowhere to stay, she livedon the streets until a friend’s family took her in.Then she met Nicoli Tucker, a therapist whohelped her see beyond her medicated self to agirl who had simply been failed by her familyand by the foster care system.

Tucker treated the troubled teen for sixyears. It took a year to build up trust, she said,but only a single counseling session to see thatTrochtenberg had been horribly misdiagnosed.

“My professional answer is I think that wasoverboard,” Tucker said of Trochtenberg’s drugregimen. “My personal answer is: Big Pharmaand Wall Street. There’s big money in keepingthese kids drugged, and I think it’s a travesty.”

Daniels also looks back on her medicationhistory as a terrible miscalculation. In a six-week span when she was 14, social workersmoved her to three different group homes inAlameda County, where she spent much of thetime worrying about her stuff being stolen. Theantidepressants and antipsychotics used to sub-due her during that time didn’t work for whatwas really hurting, she said.

“When I look back as an adult at who I waswhen I was initially diagnosed and given themedication — I needed love,” Daniels said. “No-body really sees that hurt girl, or the one whotruly just wants her mom to get her act togetherand to get off drugs, or who wants a family,something stable.

“The system relies heavily on medication todo a job that parents are supposed to do.”

News Research Director Leigh Poitingercontributed to this report. Contact Karen de Sáat 408-920-5781.

‘I CANNOTCOUNT THENUMBER OFTIMES I HAVESEEN CHILDRENON MULTIPLEMEDICATIONSWHO AREREALLYSUFFERINGFROM ABROKENHEART.’Menlo Park childpsychiatrist DavidArredondo, who hasworked with fosteryouth for 30 years

Jakeel takes his medication after softball practice. His adoptivemother later had his antipsychotic prescriptions lowered to one.

DrugsContinued from Page 17

111 BAY AREA NEWS GROUP A19SUNDAY, AUGUST 24, 2014