The smell of bacon fills the sunny New York City kitchen where 30ish, bleached-blond Petra Berrios is leaning on a broom over a pile of spilled Cheerios. She is describing her eight-year-old daughter Samantha's tiresome trek through more than seven years of HIV-treatment trials -- calmly, matter-of-factly, the way a mother might recall early play groups or nursery classes.

"When she started, she was in 152" -- an AZT monotherapy trial -- Petra remembers, using the lingo of a veteran of the AIDS-drug world. "Then she was in AZT-ddC, which was still monotherapy," says Petra, explaining that Samantha only received AZT and a placebo. Many of her daughter's trial-mates from the early '90s didn't survive. All Petra knows, in fact, is that Samantha, now a wiry, hazel-eyed powerhouse, has lived. Since that time, it's become clear that giving anyone -- kids or adults -- AZT by itself quickly leads to drug resistance and more viral activity. But that clarification came as a result of so much death and engendered so much skepticism, that parents are more prepared now to make their own decisions about treating their children.

Three and a half years ago, when it came time for Petra to choose a new combination regimen for her daughter, her instructions were simple: "Put her on mine," she told the pediatrician. The doctor balked: Not all of Petra's drugs had been studied in children. But Petra stood her ground. Samantha started on her mom's medications-and continued to thrive.

The world of pediatric HIV is governed by a combination of parent intuition and medical improvisation. Petra's daughter is one of an estimated 15,000 HIV-positive American children coming of age in what may be the best and the worst of times in the pediatric-HIV epidemic. On the one hand, rates of vertical (mother-to-fetus or mother-to-newborn) transmission have plummeted in recent years due to widespread maternal and infant use of AZT prophylaxis: One recent African study found that when women took AZT for as little as seven days prior to giving birth, the risk of transmission was reduced by 37 percent. Past studies show that AZT used in late-stage pregnancy and during labor reduces maternal transmission rates by at least 70 percent. Meanwhile, new medications, particularly protease inhibitors, are dramatically extending child life expectancy and improving the quality of everyday living, too.

On the other hand, dosing small, growing bodies takes special precision and a home life orderly enough to accommodate rigid schedules for pills and meals. And protease inhibitors, now a mere four years old, were developed through tests done almost exclusively with adults. We know almost nothing about their long-term effects in children. "These treatments are what we could only have dreamed of. They're an answered prayer-nothing short of it," says Dr. Stephen Arpadi, an HIV pediatrician at St. Luke's-Roosevelt Hospital Center. "Having said that," he says with a sigh, "It's a mess."

For many women, "the mess" is an Alice in Wonderland-like journey into a world of mysterious remedies, ever-changing variables and high-tech medical jargon. It's one thing to take a chance with a bottle of Norvir that says "Drink me!" and quite another to hand it over to your kids.

Baby steps
Many mothers are still reeling from the bombshell of their child's diagnosis when they are called upon to start making difficult treatment decisions. Marlene Diaz, a New York-based AIDS activist and educator found out she was positive when she was eight months pregnant, and knew that her daughter had tested positive at birth. (All children born to HIV-positive mothers may be passively exposed to maternal antibodies, and may temporarily test HIV-positive on the standard antibody blood test. It takes several months for maternal antibodies to disappear). Still, she was shocked when doctors told her that a more sensitive p24 antigen test had been done without her consent to confirm her daughter's HIV-positive status. "I thought, 'No, I can't handle knowing her status right now.' I figured I had 18 months before I got the verdict," she says. Instead she got the news when her daughter was two months old. "I was running from one unit to another. I was hysterical."

A mom who has been blindsided by her own diagnosis may be overwhelmed by the prospect of choosing therapies for her children. Doctors and treatment advocates both state that when most pregnant women are counseled about the risks of transmitting HIV and about effective prevention strategies, they will agree to HIV tests for themselves and their newborns. "Diagnosis [of the mother] pre-birth is critical," says Dr. Arpadi. "Otherwise, you're dealing with real psychological blows."

Since 1994, postpartum treatment with AZT has been the standard of care for all infants born to HIV-positive women. There's heartening evidence indicating that the risk of transmission can be reduced by treating babies within the first 48 hours of life, even when the mother hasn't taken AZT during her pregnancy. But once a short-course of AZT (usually no more than six weeks) is completed, things get much more complicated with babies who continue to test positive. While immediate treatment with potent HIV therapies is an option, most parents are loathe to blast a newborn with powerful drugs, especially because it's not clear if it's necessary to treat infants at all during the first six months of life. On the one hand, experts argue that early treatment may protect the immune system and help curb the initial burst of viral replication, which is far greater in children than in adults (see "More Than a Spoonful of Sugar"). Then again, the drugs themselves may cause short-term side effects like diarrhea, vomiting, and hyperbilirubinima (elevated levels of bile, a liver product that can lead to jaundice) and possibly, long-term problems. Even the Feds are straddling the fence about early intervention: The current guidelines for the use of antiretroviral agents in pediatric HIV infection offer both options, admitting that concerns about long-term side effects are "particularly relevant if life-long administration of therapy is necessary."

Daily Ordeals
If pediatric HIV treatment were just about the battle between medications and the virus, life would be much simpler. Instead, viruses live in children, who bounce between home and school under the sometimes precarious guidance of adults. Often, it's mealtimes, parental relationships, and family working hours that make or break a treatment plan. Here's one area where parents and pediatricians almost always agree: If adherance-that is, taking every dose on time every day-is tough for adults, it's close to impossible for kids.

Take Travis, a 12-year-old patient at Incarnation Children's Center in Washington Heights. On a typical visit to the clinic last January, Travis, a chunky, talkative young boy struggled to swallow a single pill while his doctor, clinic director Dr. Stephen Nicholas, and other staff members cooed, cajoled, and begged. After nearly two hours of trying, Travis swallowed the pill, then gagged and vomited all over the room. "This is a two-hour ordeal, every day," says Dr. Nicholas, winding down in his office afterwards. "What are you going to do?" He asks. "The social worker says, 'Can't we just put in a gastrostomy tube [which delivers drugs directly to the stomach]?' Now Travis would say, 'Yes, yay, hooray!' but that doesn't help him with the real issue: You can't go through life unable to swallow pills."

In Travis' case, his HIV-related troubles are complicated by an unstable living situation: he was passed along from an uncle struggling to go to college and care for him at the same time, to foster care; to his great-grandmother, back to his mother, who had been in and out of treatment for substance abuse problems; and then back to his great-grandmother. None of these caregivers had the resources or stability to help the little boy master his medication schedule, and so, at the time of the January visit, he was back in what Dr. Nicholas described as a "holding pattern" -- living at Incarnation Children's Center while a team of social workers, doctors, and case managers planned strategies that would help Travis manage his meds.

Upwards of 95 percent of children living with HIV are members of families living below the poverty line. Substance abuse, homelessness, malnutrition, and neglect all complicate treatment. And a missed dose or two may be enough to allow the virus to develop resistance and to "break through" to detectable levels in the blood. That's not to say that getting kids properly medicated is a breeze under the best of circumstances: "Two-year-olds normally become oppositional," says Dr. Arpadi. "Should they choose to assert their independence around med-taking, it's a real problem, particularly if the medication is nasty."

There are no perfect strategies for improving adherance, particularly if a child is emotionally or physically troubled. Gadgets like beepers and alarmed pillboxes can help some kids adjust to the daily routine. So can taking meds alongside an infected family member. And counting on the kind of teamwork between nurses and doctors that Travis encountered that January afternoon has proven to be key. As for covering up the notoriously bad taste of medications like Norvir liquid, anything goes: Peanut butter, chocolate syrup, salty foods, and ice are some of the favorites.

The Waiting Game
So what if Mom is the one getting between her children and the pills? After tracking her daughter's high T-cell counts -- always over 1500 -- Marlene Diaz chose to wait until her daughter was four years old before starting her on conventional medications. In the meantime she relied on massage, body work, and a broad range of vitamins and nutritional supplements to help her daughter feel healthy. The medical profession seemed to make its feelings clear about this approach, viewing Diaz with suspicion and questioning her decision to keep her daughter off the drugs. "During the first year, I switched her out of four clinics," she says. "I felt like I walked in with a big red slash over my face saying 'Bad Mother.'"

Petra Berrios recently declined her pediatrician's suggestion that she start Samantha on Ziagen, worrying that her daughter's HIV-related flu symptoms might mask the potentially fatal allergic reaction some people have to the drug. When she tells the story of the doctor's response, her eyes flash with indignation. "So the doctor said, 'Well, I'm going to put here [on the chart]: Mother is reluctant to treat.' I said, 'Stop right now. That word reluctant says I don't want to give my child meds.''' The pediatrician consulted with her department head and amended the statement to say "Mother and doctor reluctant to treat."

Going up against doctors can be scary-particularly when parental rights are at stake. Two recent cases highlighted the personal dramas involved in such a standoff. In Maine, a woman fought and won a case to keep her 4-year-old son off AZT. In Oregon, an HIV-positive woman lost legal custody of her HIV-negative newborn son because she insisted on breast-feeding him. As HIV can be passed through breast milk, the doctors argued that she was endangering the child. "Individual women are right to be afraid," says Terry McGovern, former Executive Director of New York's HIV Law Project. "There is a suspicion of HIV-positive women who have had children." In New York, McGovern says, the Administration for Children's Services (ACS) has shifted its emphasis from keeping kids with their parents to arranging for permanent foster-care placements and adoption. "You can move from neglect to termination [of parental rights] within a year," says McGovern.

The good news for parents and guardians is that there have been only a handful of these cases and that many of them are winnable precisely because there are no hard-and-fast rules about the best way to treat children. "We see very little of it overall," says Cynthia Schneider, who runs the HIV unit of Brooklyn Legal Services Corp B and believes most conflicts between doctors and parents are resolved without legal intervention.

The Psychological Toll
In coming years, it's likely that children will benefit from simpler regimens, clearer dosing information and an ever-improving system for preventing new HIV infections. Medically speaking, the future is promising, but it's hard to predict the toll of either long-term medication use or the daunting task of coping with a positive diagnosis as a child. Children with HIV represent a unique group of long-term survivors: those who have never known life without meds, frequent doctors' visits, and the specter of loss. Passing from childhood through adolescence and adulthood is an uncharted and, in some ways, unforseen journey that some experts believe we are woefully unprepared for. "Many kids with behavior problems didn't get the best services [such as family therapy] because of the misperception that they were all going to die," says Dr. Nicholas.

In fact, doctors and advocates are now sounding the alarm about a range of emerging mental-health issues that could make for a second crisis in the pediatric AIDS epidemic. "The first concern in the community was massive death, then it was having no drugs for kids. Now, it's no mental-health services," explains Emily Gordon, director of Just Kids Foundation, a group for parents and children. "It's scaring the hell out of us." Families and physicians are seeing everything from elaborate schemes to hide medication inside doorknobs and down drains rather then take it, to depression and a range of angry and self-destructive behaviors, including suicide attempts. These may change over time as kids adjust to the idea of living with an deadly virus, taking medication for the rest of their days -- and letting other people know about it. But in some cases their feelings may get worse instead of better -- and this combustible mix of emotional and physical issues will require solutions that don't yet exist. Looking ahead, Dr. Nicholas says, "There are a small but significant number of HIV-positive kids with severe mental-health problems that will not be accommodated by any existing systems: not schools, not mental-healthcare systems. Where mental health and HIV overlap, there's nobody there." Nicholas adds that residential settings, like Incarnation Children's Center, will have to structure their services to meet the needs of children and young adults who would otherwise become "chronically institutionalized."

Managing a child's HIV infection is a full-time job-and in many cases the strain can take its toll on the mental and physical health of an HIV-infected parent. While she was negotiating her daughter's latest regimen, Petra stopped taking her own drugs and hasn't gone back on-she doesn't want to risk medication side effects that could throw a wrench in her busy schedule, which includes planning for Samantha's trip to a new summer camp and working overtime as co-coordinator of S.M.A.R.T. University, an HIV-positive-women's treatment advocacy organization. Right now, it's a strategy that has both of them alive and, well, kicking. Talking about Samantha's latest accomplishments as a blue-belt karate whiz, Petra lights up. "She just won first place in a tournament," Petra says. "Whenever I see her feeling good, it's like, 'Hey! I'm doing something,'" she adds, with a broad smile that says watching a child grow up may be the best medicine of all.