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November 28, 2006

MHANYS DECEMBER 13TH HUDSON RIVER REGIONAL MENTAL HEALTH POLICY DISCUSSION CANCELLED DUE TO LEGISLATURE'S RETURN TO ALBANY- 4 REGIONAL MENTAL HEALTH POLICY FORUMS WILL GO ON: Due to the NYS Legislature’s anticipated return to Albany on December 13TH (read more in “NYS LEGISLATURE TO RETURN TO ALBANY ON DECEMBER 13TH FOR “SPECIAL SESSION” TO ADDRESS CIVIL COMMITMENT OF SEXUAL OFFENDERS,” below), the MHANYS Public Policy Discussion scheduled for that day in Kingston, NY is being canceled.

However, 4 other Mental Health Association affiliates will still be hosting discussions about mental health policy issues in New York State in December, which will include updates and a dialog with MHANYS staff and members of the MHANYS Board of Directors. These discussions will include updates on the status of mental health policy issues currently pending in Albany and insight into what changes can be expected with the Spitzer Administration. Most importantly, this discussion will provide an open forum in which issues related to mental health can be raised and discussed for possible inclusion in the mental health policy agenda in Albany for 2007.

All discussions are completely open to the public, and all individuals interested in mental health policy in New York State should participate. Most discussions will include lunch or refreshments.

4 Opportunities to Participate:
• Binghamton – December 4th hosted by the Mental Health Association of the Southern Tier
• Batavia – December 5th hosted by the Genesee County Mental Health Association
• Buffalo – December 6th hosted by the Mental Health Association of Erie County
• Glens Falls – December 14th hosted by the Warren/Washington Association for Mental Health

Location information for each event, as well as RSVP information is available at http://mhanys.org/policy/Forum-Dates2006.htm or by contacting Michael Seereiter at mseereiter@mhanys.org or 518-434-0439 x221.

NYS LEGISLATURE TO RETURN TO ALBANY ON DECEMBER 13TH FOR “SPECIAL SESSION” TO ADDRESS CIVIL COMMITMENT OF SEXUAL OFFENDERS: As was indicated in the most recent edition of the Mental Health Update, Governor Pataki is calling the NYS Legislature back to Albany for a "Special Session" on December 13th to take up legislation aimed at civilly confining sexual offenders in state psychiatric centers. The Governor's action is in response to the NYS Court of Appeal's decision last week which found the Pataki Administration's use of Mental Hygiene Law to “civilly confine” sexual offenders in state psychiatric centers illegal.

This solidifies questions about the Assembly and/or Senate’s return to Albany, however what they will accomplish remains to been seen. Great speculation about possible Legislative pay raises (partially in response to the NYC Council’s recent pay raise) have been mentioned in nearly every newspaper around the state in recent days. Mental health advocates have been pushing for the Assembly’s return to Albany ever since the NYS Senate passed the agreed upon version of Timothy’s Law in September, so that this legislation could be passed in the Assembly and delivered to Governor Pataki for his consideration before the end of the year when he leaves office. However, at this point, it appears that nothing has been decided about any of these issues, including what the Assembly and Senate will do with regard to the Governor's legislation to civilly commit of sexual offenders.

MHANYS and other mental health advocates have consistently opposed the bills to civilly confine sexual offenders in state psychiatric centers after their release from prison. Specifically, from our point of view in the mental health community, (1) civil commitment would place vulnerable individuals in psychiatric centers at a safety risk; (2) cost the mental health system hundreds of millions of dollars to contain only a tiny percentage of sexual offenders; (3) and undo efforts made in the mental health community to erase the common misconception that those with psychiatric disabilities are violent and dangerous.

MHANYS and others continue to contend that a more comprehensive approach to sexual offender management is needed in NYS. Rather than a knee-jerk reaction approach which simply tries to keep offenders off the street after they have served their sentence, we join with the experts in sex offender management in calling for a more effective and less costly approach aimed at preventing sexual offense. This approach would also include establishing longer periods of supervision and monitoring for those who do offend and creating a state office entirely responsible for overseeing all facets of sex offender management (including education and prevention programs, investigation, prosecution, incarceration, community supervision and treatment).

IN THE NEWS:

Speaker Silver Needs to Change His Mind
Troy Record Editorial
By: The Star-Gazette of Elmira 11/24/06

For those who have lost track, this law is named after 12-year-old Timothy O'Clair, a Schenectady boy who committed suicide after his parents fought for years to get him adequate mental health care. The family's insurance coverage was limited, and the last-minute desperate attempt to get Timothy care by relinquishing custody to the state proved too late.

No family - no one - should find themselves in such a position.

But years of negative stereotypes about mental illness still cling to us, and insurance companies have been reluctant to alter that norm. If a person is diagnosed with a heart ailment rooted in a physical imperfection, treatment is generally undertaken and continues until full recovery or a long-term maintenance plan is set.

If someone is diagnosed with bipolar disorder, an ailment rooted in a physical imperfection in the brain, treatment is too often refused or limited, regardless of the health impact of that policy. Old notions that mental health issues are a defect in character, rather than a flaw in brain function, have long buried that health care disparity under a cloak of shame.

With its passage of Timothy's Law, the Senate tried to help change that. The law sets minimum outpatient and inpatient visit insurance standards for everyone. In addition to assisting small businesses in meeting any potential added costs, it broadens the scope of coverage large employers must provide to adults and at-risk children - including health issues such as major depression and panic disorders, illnesses long dismissed as an indulgence to the weak willed.

It is far from a perfect package. Too little is done to address addictive disorders such as alcoholism and substance abuse. An earlier Assembly-backed version of the bill included this coverage, but this version does not.

This Timothy's Law is an important first step, and the Assembly should return before year's end to add its approval. A spokesman for Sheldon Silver, D-Manhattan, said the speaker has no plans to call a special session. We urge the speaker to change his mind.

Without Assembly approval this year, the measure would die. Don't let that happen without a vote, Mr. Silver.

Breaking down this barrier is essential and long overdue.


Sex Offender Bill Considered. By The Associated Press
Newsday, November 28, 2006

ALBANY - The State Legislature will return to Albany Dec. 13 to consider laws that would allow confining sex offenders in psychiatric facilities after they have finished serving prison sentences.

Negotiations will also heat up on other issues that could be enacted in the closing days of Gov. George Pataki's 12 years in office. Among them are:

Action on the closing of hospitals and health facilities statewide under a plan scheduled for release today. Without the legislature's objection, the plan could be effective Jan. 1.

A possible override of Pataki's veto of an early retirement plan for public workers.
Increasing the number of charter schools allowed in the state from the current cap of 100.

Pataki called the legislature back yesterday, less than a week after his executive order to confine dangerous sex offenders in psychiatric facilities was overturned by the state's highest court.

On Nov. 21, the Court of Appeals said the Pataki administration acted illegally when it ordered sex offenders held without hearings as psychiatric patients after their prison terms were up. Pataki ordered the convicts held because he was frustrated by the legislature's failure to enact a law preventing their return to communities where they might repeat their crimes.

Pataki has said "civil commitment" is needed because of the high rate of repeat attacks by some sex offenders.


Don't Rush to Legislate - Civil confinement of sex offenders is too contentious to act on hastily. Editorial
Newsday, November 28, 2006

The question of how to protect our communities from sex offenders is so complex, and the solutions so elusive, that the last thing that's needed now is a special session of the State Legislature to try to pass a bill that the two houses have futilely batted back and forth for many months.

The issue is civil confinement: sending the worst sex offenders to psychiatric facilities after they have completed criminal sentences for their crimes. Last year, after the state's lawmakers failed to agree on a civil confinement bill, Gov. George Pataki decided to confine sexually violent predators by ordering the commitments administratively. Last week, the Court of Appeals unanimously slapped down that approach.

Pataki responded by saying he'd call a special session to pass a bill. That's the wrong way to do it.

Clearly, Pataki wants to resolve the issue before he leaves office. His stated reason is all the work he has done, without getting the bill he wants through the Assembly. But there's an obvious subtext: He wants to be president, and presidential candidates always strive to appear tough on crime.

The governor-elect, Eliot Spitzer, also knows a lot about this issue. As attorney general, he has had to defend Pataki's approach in court - an effort the Court of Appeals has now rejected. But Spitzer does agree with Pataki on the need for a civil confinement bill. Better to leave this issue for Spitzer to handle after he takes office in January.

Everyone wants children protected from violent sex offenders. Pataki says the State Senate bill that he favors is similar to laws in other states that the U.S. Supreme Court has found acceptable. But civil confinement still means sending people to psychiatric facilities for treatment, even though many experts say that the personality disorder in those who prey on children can't be treated successfully.

At least in psychiatric centers, some argue, sex offenders can be monitored and studied for treatments that may help. Maybe. And perhaps, with carefully constructed judicial review, civil confinement can work fairly. But New York shouldn't pass a law hastily, in a special session, as one governor leaves office and a new one waits in the wings.


Keep Sex Predators Behind Bars. Editorial.
NY Daily News, November 24, 2006

Gov. Pataki is calling the Legislature into special session in an effort to win passage of a law allowing New York to keep proven sexual predators confined in mental hospitals long after they have finished their prison sentences. Lawmakers should happily return to Albany for the quick enactment of the strongest possible bill.

The soon-to-be ex-governor issued his summons after the Court of Appeals ruled that he could not institutionalize these dangerous felons under existing state laws - an action Pataki began taking only because the state Senate and Assembly couldn't agree on a so-called civil confinement bill. They must now remedy that failure.

The onus falls primarily on Assembly Democrats and their leader, Speaker Sheldon Silver of Manhattan. While Pataki and the Republican-led Senate have supported civil confinement measures for nine consecutive legislative sessions, the Assembly took no action on the issue until this year. Then it passed a bill that would have provided the alleged predators with greater procedural protections than those fashioned by the Senate. Then the two houses never finished conferencing on the issue, for which Silver blames the Senate.

Enough is enough. The net result was inaction on a vital matter of public safety.

Pataki's proposal follows a model that the U.S. Supreme Court has found constitutional and is being used by 16 states. It sets up a process for screening sexual offenders while they're still in prison, having psychiatrists determine which ones are most likely to attack again and - after a trial-like hearing - commit the most dangerous to secure treatment facilities until they're safe for release.

Silver says he supports civil confinement in principle. Gov.-elect Eliot Spitzer goes for the concept as well. There is no reason the Legislature and the present governor cannot come to terms on a muscular law by year's end. Pataki has already confined 112 predators using procedures invalidated by the court, which did a public service in not ordering the immediate release of the dozen who challenged their confinement. But it is only a matter of time before a court starts cutting predators loose, unless Albany finally acts responsibly.


N.Y. Needs Law on Civil Confinement. Editorial.
Utica Observer-Dispatch, November 28, 2006

AT ISSUE: Court ruling on sex offenders reiterates need for law

The ruling by New York's top court regarding sex offenders illustrates the need for state lawmakers to address the matter of civil confinement — at last.

Our state should have a legal process that protects the public, particularly our children, from dangerous sex offenders and affords due process of law to the offenders.

Gov. George Pataki had used a state mental health law that allows people deemed a threat to society to be confined in secure psychiatric facilities to keep violent sex offenders likely to attack again off the streets. This latest court ruling says Pataki didn't have the authority to do that.

In a 7-0 decision, the Court of Appeals found that 12 sex offenders, who are still in custody, should have been granted a hearing to determine whether they were still dangerous before being transferred to psychiatric facilities. The ruling ordered hearings take place immediately.

No one wants to see dangerous sex offenders released, but no one who appreciates the freedoms of our democracy should be happy about denying anyone — however egregious their offense — due process of the law.

This issue of civil confinement for sex offenders, who have a high rate of recidivism, has been out there for some time. Pataki's frustration with the lack of action by the Legislature is understandable and no doubt shared by many, but his solution was the wrong one. The need for lawmakers to create a legal process for handling these cases is clear and immediate.

And as Assemblywoman RoAnn Destito, D-Rome, said, the new law should also be specific about what level of security is to be used at the Sex Offender Treatment Program at Central New York Psychiatric Center, where some of these offenders will be confined.

There has been some controversy over whether security hospital treatment assistants or lesser-grade secure care treatment aides should be the ones handling security for the sex offenders at Marcy. The new legislation should resolve that issue with the safety of the offenders, employees and the neighboring communities — as well as the costs — in mind.

This legislation can make New York a safer place to live. It's time to act.


Proof Is Scant on Psychiatric Drug Mix for Young. By Gardiner Harris
The New York Times, November 23, 2006

Their rooms are a mess, their trophies line the walls, and both have profiles on MySpace.com. Stephen and Jacob Meszaros seem like typical teenagers until their mother offers a glimpse into the family’s medicine cabinet.

Bottles of psychiatric medications fill the shelves. Stephen, 15, takes the antidepressants Zoloft and Desyrel for depression, the anticonvulsant Lamictal to moderate his moods and the stimulant Focalin XR to improve concentration. Jacob, 14, takes Focalin XR for concentration, the anticonvulsant Depakote to moderate his moods, the antipsychotic Risperdal to reduce anger and the antihypertensive Catapres to induce sleep.

Over the last three years, each boy has been prescribed 28 different psychiatric drugs.

“Sometimes, when you look at all the drugs they’ve taken, you wonder, ‘Wow, did I really do this to my kids?’ ” said their mother, Tricia Kehoe of Sharpsville, Pa. “But I’ve seen them without the meds, and there’s a major difference.”

There is little doubt that some psychiatric medicines, taken by themselves, work well in children. For example, dozens of studies have shown that stimulants improve attentiveness. A handful of other psychiatric drugs have proven effective against childhood obsessive compulsive disorder, among other problems.

But a growing number of children and teenagers in the United States are taking not just a single drug for discrete psychiatric difficulties but combinations of powerful and even life-threatening medications to treat a dizzying array of problems.

Last year in the United States, about 1.6 million children and teenagers — 280,000 of them under age 10 — were given at least two psychiatric drugs in combination, according to an analysis performed by Medco Health Solutions at the request of The New York Times. More than 500,000 were prescribed at least three psychiatric drugs. More than 160,000 got at least four medications together, the analysis found.

Many psychiatrists and parents believe that such drug combinations, often referred to as drug cocktails, help. But there is virtually no scientific evidence to justify this multiplication of pills, researchers say. A few studies have shown that a combination of two drugs can be helpful in adult patients, but the evidence in children is scant. And there is no evidence at all — “zero,” “zip,” “nil,” experts said — that combining three or more drugs is appropriate or even effective in children or adults.

“There are not any good scientific data to support the widespread use of these medicines in children, particularly in young children where the scientific data are even more scarce,” said Dr. Thomas R. Insel, director of the National Institute of Mental Health.

Psychiatrists who prescribe drug combinations say that the ability to mix and match medications improves their chances of being able to help children who are seriously, even desperately, ill.

Dr. Joseph Biederman, a professor of psychiatry at Harvard, said that doctors commonly used multiple medicines to treat heart disease, diabetes, cancer and AIDS. “Child psychiatry is not any different,” Dr. Biederman said. “These drugs have revolutionized how we treat severe psychopathology in children.”

The controversy leaves parents in a terrible bind. Desperate to help, many agonize over whether to medicate their children.

Mothers and fathers sometimes disagree, with the dispute straining or even ending marriages. Since some psychiatric drugs can cause worrisome physical effects, parents say that they must on occasion make a terrifying choice between their child’s physical health and his mental health.

The parents interviewed for this article told their stories, they said, in hopes of gaining greater acceptance for their children and themselves. Nearly all recalled being in a store when their child threw a tantrum and feeling that onlookers branded them as bad parents. They also said they hoped to help others negotiate what many said were unequal and often fraught relationships with psychiatrists.

“We struggled so much, made so many mistakes and felt so stigmatized, I hope our story can make it easier for others,” said Jacquie Erickson of Anchorage. Her daughter, Kaitlyn Johnston, 10, has taken psychiatric drugs since she turned 5 for diagnoses that include bipolar disorder.

ON SHAKY GROUND
Stimulants like Ritalin are by far the most commonly prescribed psychiatric medicines in children. But doctors routinely pair stimulants with antidepressants, antipsychotics and anticonvulsants, even though some of these medications can cause serious side effects, have few proven pediatric psychiatric benefits and lack clear evidence about how they interact or influence mental and physical development.

Last year, the Food and Drug Administration required drug makers to warn on their labels that antidepressants can cause suicidal thoughts and behavior in some children. Anticonvulsant drugs carry warnings about liver and pancreas damage and fatal skin rashes. The side effects of antipsychotic medicines can include rapid weight gain, diabetes, irreversible tics and, in elderly patients with dementia, sudden death. When drugs are combined, these risks compound.

Ms. Kehoe, who receives government financial and child-care assistance because her children are considered mentally ill, said she knew that there were risks to the drug cocktails. Both her sons are short and underweight for their age — a common side effect of stimulants — and she fears that the drugs have affected their health and behavior in other ways.

“But I don’t think the insurance would pay for it if the F.D.A. didn’t decide that children should use it,” said Ms. Kehoe, who herself takes psychiatric medication.

In fact, the drug agency has specifically warned against the use of Lamictal, one of the drugs Stephen takes, in children who, like him, do not suffer from seizures because in 8 out of 1,000 children the drug causes life-threatening rashes.

Stephen and Jacob’s psychiatrist did not reply to telephone messages left with an office secretary on three different days. Ms. Kehoe said that she asked him to speak to this reporter but that he refused. The boys have had 11 psychiatrists over the last three years, according to prescription records, and many more before that, Ms. Kehoe said.

In interviews, Stephen and Jacob said they hated taking their drug cocktails.

“Everybody hates meds,” Jacob said.

Ms. Kehoe said her youngest son, Lucas Keck, was showing signs of attention deficit disorder and might soon need to start medication.

“I see the hyperness in him,” she said. “My pediatrician has said that he would venture to say that Lucas will be A.D.H.D.”

Stephen and Jacob were Lucas’s age — 6 — when they were given their first prescriptions.

The F.D.A. requires drug makers to prove that their drugs work safely before the agency will approve them for sale in the United States. But doctors can prescribe and combine approved medicines as they see fit. Such mixing is common in medicine but rarely studied by drug makers.

Psychiatrists started mixing psychiatric medications because the drugs were only moderately effective and often caused terrible side effects, said Dr. Steven E. Hyman, the provost of Harvard University and former director of the National Institute of Mental Health. “None of these drugs by themselves do an adequate job of controlling symptoms,” Dr. Hyman said.

If one drug failed, many psychiatrists assumed that two or more drugs used together might succeed. For decades, no one studied whether this was accurate. But in recent years, a trickle of studies have examined the question, with mixed results.

In studies in adults, some combinations of two drugs have been shown to work better than single medications to improve the symptoms of depression, obsessive-compulsive disorder and the mania associated with bipolar disorder. For example, a recent large government-financed study in adults, published in The New England Journal of Medicine, found that two antidepressants worked a bit better than one for adults who suffered from chronic, severe depression. But other studies have found no benefit from commonly prescribed drug combinations.

The use of two-medicine combinations in children is on much shakier ground. Even for single drugs, the effectiveness of some psychiatric medications in younger patients is questionable: most trials of antidepressants in depressed children, for instance, fail to show any beneficial effect. But hardly any studies have examined the safety or the effectiveness of medicine combinations in children. A 2003 review in The American Journal of Psychiatry found only six controlled trials of two-drug combinations. Four of the six failed to show any benefit; in a fifth, the improvement was offset by greater side effects.

“No one has been able to show that the benefits of these combinations outweigh the risks in children,” said Dr. Daniel J. Safer, an associate professor of psychiatry at Johns Hopkins University and an author of the 2003 review.

If the evidence for two-drug combinations is minimal, for three-drug combinations it is nonexistent, several top experts said.

“The data is zip,” Dr. Hyman said.

Many psychiatrists said that they turned to drug cocktails only in desperate circumstances. “If you’ve got a 15-year-old who is cutting up her arms, you’ve got a barn on fire and what are you supposed to do?” asked Dr. Alexander Lerman, a child and adolescent psychiatrist in New York, who said he rarely prescribed combinations.

Billy and Jackie Igafo-Te’o of Jackson, Mich., are among the desperate. In the last seven years, their 12-year-old son, Michael, “has been on just about everything you can put a child on,” Mrs. Igafo-Te’o said. He is now taking four medications: an antipsychotic, an anticonvulsant, an antidepressant and a sleep medicine.

Despite the medications, Michael’s behavior has grown increasingly disruptive. He has kicked and punched holes in almost every wall of the Igafo-Te’o home. He wrenched the sink off the wall in the upstairs bathroom and pulled two bedroom doors off their hinges, damaging the frames. The family no longer fixes the damage.

During a recent visit, Michael and Mr. Igafo-Te’o were sitting on the living-room floor. Michael wanted the phone. His father held it out of reach to prevent Michael from playing with it. Michael became increasingly desperate. He cried. He cursed.

“That’s it, you have a timeout,” Mr. Igafo-Te’o said.

“No, no, no,” Michael answered. “You pimp!”

He slapped his father in the face, hard. Mr. Igafo-Te’o hustled Michael into the kitchen and forced him to sit for 20 minutes.

“What’s the purpose of all this medication if I still have to do that?” Mr. Igafo-Te’o asked.

He said he wanted to end Michael’s drug therapy. Among other side effects, the drugs have made Michael obese, which has led to asthma.

Mrs. Igafo-Te’o quietly disagreed. “I’m afraid he wouldn’t be able to focus,” she said. “I’m afraid he would regress socially.”

“Regress socially? Look at him!” her husband responded, motioning to their son, crying uncontrollably on the kitchen floor.

“I have to believe in something,” his wife mumbled and walked out of the room.

Mr. Igafo-Te’o watched her go and then smiled apologetically.

“We always debate meds,” he said.

DIVERGENT VIEWS
Most experts agree that some children are so violent or suicidal that a combination of psychiatric drugs is worth trying. But recently, more psychiatrists have been asking whether in some cases drugs are being prescribed for children who do not need them, or for problems that fall within the spectrum of normal behavior. The doubters are especially concerned with the growing use of drug combinations for preschoolers.

Fate Riske, 3, of Fond du Lac, Wis., takes two antipsychotics and a sleeping medicine to control what her mother, Elizabeth Klein-Riske, said were hours-long tantrums, a desire to watch the same movies repeatedly and an insistence on eating the meat, cheese and bread in her sandwiches separately.

On a recent visit, Fate played sweetly for four hours as her parents, who both have trouble walking, sat in front of a television. Sucking on a pacifier, Fate showed off her pink dress and matching shoes.

Mrs. Klein-Riske credited the drugs for Fate’s cherubic behavior during the visit. But a few weeks on a different antipsychotic led Fate to become aggressive, talk rapidly and “run around wild, totally out of control,” said Mrs. Klein-Riske, who receives government financial and child-care assistance because her daughter is considered mentally ill.

Fate’s weight ballooned in five months to 48 pounds from 30.

Dr. Gary Sachs, director of the Bipolar Clinic and Research Program at Massachusetts General Hospital in Boston, estimated that half the children referred to his clinic for research in recent years — including many who took drug combinations — had the wrong diagnosis and often did well on fewer drugs. “Even among properly diagnosed bipolar patients, many come to our program already taking medicines that interfered with each other,” Dr. Sachs said.

But Dr. Judith Rapoport, a senior investigator in child psychiatry at the National Institute of Mental Health, said that in her experience, few children were overmedicated. Dr. Rapoport studies children with schizophrenia. Before entering her study, children must be drug-free for three weeks.

“We’ve had a handful of cases who are completely normal when they get off drugs,” Dr. Rapoport said. “But most of these kids become very, very sick and unmanageable without drugs.”

The first psychiatric problem diagnosed in most children is attention deficit disorder, treated with stimulants — drugs that improve attentiveness. But when children’s problems persist, parents’ relatively good experience with stimulants often convinces them to agree to try other medicines — in some cases drugs like the antipsychotic Risperdal or the anticonvulsant Depakote that have few proven benefits in children and greater dangers, said Dr. Ranga Krishnan, chairman of the department of psychiatry and behavioral science at Duke University.

“After you get them on one drug, parents don’t seem to mind the second,” said Dr. Krishnan, who said that he had grave doubts about the growing use of psychiatric drug cocktails in children.

Antidepressants are commonly paired with stimulants, but antidepressant use has declined over the last year after the F.D.A. warning about suicide risk. In their place, physicians are prescribing combinations that include antipsychotic and anticonvulsant drugs, according to Medco. From 2001 to 2005, the use of antipsychotic drugs in children and teenagers grew 73 percent, Medco found. Among girls, antipsychotic use more than doubled.

ON AGAIN, OFF AGAIN
Andrew Darr of Caldwell, Idaho, whose sons took medications, said that he was opposed to it from the start. “When you come home from work and instead of getting them clawing at your feet and yelling, ‘Daddy, Daddy,’ you get a lethargic grunt, it just kills you,” Mr. Darr said.

His wife, Leslie Darr, eventually agreed to stop the medicines, but only after a family tragedy.

The Darrs have four children, Nicholas, 16, Nathan, 15, Becky, 12, and Benjamin, 9. At 3, Nicholas suffered a mild brain injury when undiagnosed appendicitis led him to suffer weeks of high fever, Mrs. Darr said.

Mrs. Darr said that she was pressured by school officials to give Nicholas a stimulant at age 6. Nathan soon followed.

Three years later, the boys had a traumatic weekend away with relatives. A month after that, Mrs. Darr said, both were hospitalized for a week and given a diagnosis of bipolar disorder and prescriptions for antipsychotic, antidepressant and sleeping medicines.

Over the next three years, Nicholas’s weight ballooned to 140 pounds from 52. Nathan went to 115 pounds from 48. Neither boy got much taller, Mrs. Darr said. They did poorly in school.

Then Becky developed a brain tumor. A nurse practitioner gave Mrs. Darr free samples of an antipsychotic drug to help her cope. After starting it, she said, she could not sleep or think straight. She realized that she had been giving similar medicines to her sons for years and she decided to wean the boys off the pills.

Their behavior immediately worsened. At one point, Nicholas left the house during a blizzard wearing only boxer shorts, Mrs. Darr said. They found him in a tire swing saying, “Baaa.”

“There were several times that we almost gave up,” Mr. Darr said.

But after four months off medication, the boys’ behavior normalized, the Darrs said, and they were transferred out of special education and into regular classes. The Darrs recently allowed the boys to spend their first evening at a mall without supervision, and in July they gave both boys their first bicycles. “They’ve come a long way,” Mrs. Darr said.

In an interview, Nicholas said the drugs “were not cool.”

“You go to school and everybody thinks, ‘Look at that retard,’ ” he said.

Still, most of the parents interviewed for this article said their children’s behavior deteriorated rapidly without medication.

Joanne Johnson of Hillsborough, N.J., described a psychiatrist’s effort to wean her 17-year-old son, Brad, off of all five of his psychiatric medicines as “the biggest mistake of our lives.”

Brad, then 13, became suicidal and was hospitalized for weeks, Ms. Johnson said.

“He went into the hospital on five drugs and came out on five different ones, but he was unstable,” she said. “It took a little over two years to find the right match again.”

Brad is now taking lithium, an antipsychotic, an anticonvulsant, an antidepressant, a stimulant and a sleeping pill.

“He’ll probably be on these for the rest of his life,” Ms. Johnson said.