ADVOCATES ALARMED BY DRUGS USED FOR KIDS MEDICAID CHILDREN UNDER 6 AT ISSUE

CAROL MARBIN MILLER

The Miami Herald

Almost 600 Florida Medicaid recipients under age 6 were given powerful psychiatric drugs last year with potentially serious side effects - drugs marketed to combat an illness that experts say is virtually nonexistent among children their age.

The drugs - including Clozaril, Zyprexa, and Risperdal - are marketed for the treatment of schizophrenia and other psychotic disorders in adults, but in recent weeks, children's advocates throughout Florida have expressed concerns the medications are being used to control the behavior of unruly children, especially those in state care.

"I'm starting to get scared here," said Jack Levine, president of the Tallahassee-based Center for Florida's Children.

Records from the state Agency for Health Care Administration obtained recently by The Herald show that nearly 400 of the children given antipsychotic drugs last year were under age 5.

All were recipients of Medicaid, the federally funded insurance plan for needy children and adults. Florida's Medicaid office, which is administered by the healthcare agency, keeps detailed records on billing and reimbursement of medications for the needy, but has no direct oversight of doctors who provide care.

The Agency for Health Care Administration, which regulates doctors and other healthcare providers, could take action against a physician found to be negligent.

"We make some basic assumptions about children who need medical care, assumptions about services that are supported by tax dollars, and especially about children who are in the care of state agencies," Levine said.

"An assumption I thought we made was that their care would never be appreciably different, in terms of medical carefulness and appropriateness of prescriptions, than everyone else's children. I'm starting to feel there is a remarkable difference in how these children are being looked at, diagnosed and treated."

The health care administration's records do not specify which of the children are in state care.

The drugs could have been prescribed by family doctors, or doctors under contract with agencies that treat children in state care.

While child psychiatrists say there are legitimate uses for the drugs in treating some more common disorders such as attention deficit-hyperactivity disorder and pervasive developmental disorder, a form of autism, children's advocates were startled that so many children are being administered them.

`CHEMICAL RESTRAINTS'

Last month, The Herald reported claims by children's advocates that hard-to-manage children in Florida's troubled foster care system were being routinely given powerful psychiatric drugs as "chemical restraints."

The state Department of Children & Families, which administers the state's children protection and foster care efforts, has insisted that officials do not encourage - and, indeed, will not tolerate - the use of drugs as a means to restrain unmanageable children.

Last week, the federally funded Advocacy Center for Persons with Disabilities urged the department to immediately halt all new prescriptions of the drug Risperdal, as well as other anti-psychotic drugs. Risperdal, widely prescribed among children, is the most commonly used among newer antipsychotics.

The group also urged child welfare officials to begin an "immediate" and independent investigation into the use of psychiatric drugs among foster children.

Pat Wear, the Advocacy Center's deputy director, said revelations about foster children being chemically restrained have left him "broken-hearted."

"Just when you think you've heard all the bad news you can hear, you hear this," he said of the large number of very small children being administered psychotropic drugs.

QUICK ACTION

The Department of Children & Families acted quickly. The agency has appointed two high-ranking department doctors to oversee an evaluation of children in state care who are taking the drugs. In Broward, where many of the complaints first arose, a child welfare manager is preparing a spreadsheet listing every child in care, and what drugs they are taking.

Only about 1 in 40,000 people experience childhood onset of schizophrenia, a debilitating disorder often marked by hallucinations, delusions, paranoia and other forms of psychosis, said a spokesman for the National Institute for Mental Health. In contrast, the disorder affects about 1 percent of adults, with onset generally occurring between age 16 and 30.

Judith L. Rapoport, who is the chief of child psychiatry at NIMH, described childhood onset of schizophrenia as very rare.

"No one knows exactly" how rare, she said, because researchers can't find enough subjects to perform an epidemiology study.

Nonetheless, Rapoport estimates that one child is diagnosed with the disorder for every 300 adults who were diagnosed. As for children below age 7, "they may exist," Rapoport said, "we just haven't seen any."

"When you look at very young children, we haven't found a convincing case for schizophrenia where it started before the age of 7," she added.

`OFF-LABEL' USE

So-called atypical antipsychotic drugs, such as Risperdal, are marketed to combat the psychotic symptoms of schizophrenia, and most have not been specifically approved for use with children - though it's not unusual for drugs to be administered for an "off-label" use.

According to the Agency for Health Care Administration, 389 children under age 5 who receive Medicaid were administered antipsychotics in 2000. Another 200 or so 5-year-olds were given the drugs, as well.

Among the toddlers, 46 2-year-olds were prescribed anti-psychotics, as well as 67 3-year-olds.

Among the 4-year-olds, 177 children were medicated with the drugs in 2000, the agency's records show. Records with the health care agency are unclear for about 59 of the children.

Jerry Wells, pharmacy program manager for the Agency for Health Care Administration, said Children & Families officials also requested detailed data from his agency after an April story in The Herald.

"They were kind of shocked at some of the kids on these drugs," Wells said of the DCF officials.

SIDE EFFECTS

The drugs have been linked to potentially dangerous side effects.

According to records reviewed by The Herald, as well as several interviews, children in foster care administered antipsychotics have experienced lethargy, agitation, tremors and even the development of unusually large breasts. One boy even began to produce breast milk.

"You are talking about some very young children," said Mary Giliberti, a senior staff attorney at the Bazelon Center for Mental Health Law in Washington, an advocacy group for people with mental illness, and foster children. "I'm the mom of a 2-year-old, and I find this very startling and disturbing information."

"These are very powerful drugs," Giliberti said. "This merits the state taking serious, immediate action."