FOCUS: ATTENTION-DEFICIT DISORDER A crusade for Shaina --------------------------------------------------------------------------- ----- Two years after their daughter's death, a couple strives to change how attention-deficit disorder is handled [Fred A. Baughman Jr., MD:
By GENE WARNER News Staff Reporter 5/21/2003 ROBERT KIRKHAM/Buffalo News Steven and Vicky Dunkle visit their daughter Shaina's grave in Rosehill Cemetery every night. The child died of toxic levels of Desipramine, prescribed to battle Attention Deficit Hyperactivity Disorder. [Fred A. Baughman Jr., MD:
In seven months, Shaina Dunkle went from 10 milligrams of Desipramine a day to 250. [Fred A. Baughman Jr., MD:
Every night at 10 p.m., Vicky and Steven Dunkle go to nearby Rosehill Cemetery in their northern Pennsylvania community of Smethport, where they say good-night to their daughter, reciting her prayers with her, just as they did when she was alive. "Now I lay me down to sleep . . . ," they begin. Ten-year-old Shaina Dunkle died on Feb. 26, 2001, after suffering two seizures, one at school, the other in her pediatrician's office in nearby Bradford, Pa. An autopsy revealed she died from toxic levels of the drug Desipramine. Desipramine - a drug prescribed to battle the little girl's Attention Deficit Hyperactivity Disorder. The neurological disorder, which affects millions of school children across the nation, is marked by three possible behaviors. Children may be hyperactive, easily distracted and/or impulsive. [Fred A. Baughman Jr., MD:
The number of affected children is staggering, well into the millions. The latest statistics claim that 5 to 7 percent of children ages 5-12 have been identified with the disorder. In the simplest terms, that typically means one or two children in an elementary class of 30 students. Some estimates claim that up to 5 million children across the nation take the stimulant Ritalin or other drugs for behavioral disorders. Deaths from such drugs are rare, estimated at anywhere from seven to 16. That's little more than 1 in a million - but not to the Dunkles. More than two years after their daughter's death, the Dunkles are working with several other parents across the nation in an attempt to expose what they consider the twin risks of over-diagnosing the disorder in school children and then over-prescribing medication for them. The Dunkles represent more than a fringe element of grieving parents taking issue with how schools deal with the disorder. William E. Pelham, a University at Buffalo professor and a national expert on the disorder, cited many school districts' eagerness to have children medicated, rather than have their behavior modified without drugs. "I'm a very strong proponent of having schools and parents do more behavioral approaches, so there will be fewer kids medicated," said Pelham, director of UB's Center for Children and Families. "Recent studies have shown that up to half the children with ADHD who are treated with behavior modification never need medication." Reaction here The Dunkles have a Web site. They've already visited the "Today" show, "Montel Williams" and other talk shows. It's a pledge the Dunkles made to their daughter, following that awful day when she died in their arms in the doctor's office. "Shaina looked into my eyes as her life ended, and I could do nothing to save her," Vicky Dunkle said. "It's been two years, and I relive those last few minutes every day." The Dunkles are on a mission, to save other children through Shaina's death. "A lot of schools are recommending, suggesting and coercing parents into drugging their children for ADHD," Vicky Dunkle said. "And we feel the most important thing is that the pharmacies and the physicians properly warn people about the risks of any medication, not just the minor side effects." Local experts, without knowing all the facts about the Shaina Dunkle case, are reluctant to comment on it. But several sources said some elements, including the large dosage of the anti-depressant Desipramine for a child, raise some immediate red flags about her case. One red flag: Desipramine hasn't been approved by the Food and Drug Administration for children with the disorder. "There are a number of medications that have been approved by the FDA for ADHD, and those are the ones kids should be getting, period," said Pelham, a UB professor of psychology, pediatrics and psychiatry. A consensus seemed to emerge from other local professionals that physicians here are cautious about prescribing medication for the disorder, but that parents still need to be much better informed. John K. Benjamins, an Amherst psychologist specializing in behavioral disorders and learning disabilities, has seen no more than 10 cases in the last 30 years where school districts have taken a decisive stand seeking outside evaluation of a child. He also believes physicians try to inform parents about the drugs they're prescribing. "Every psychiatrist that I know tells the patient and the parents what the significant side effects are and what the risks and benefits are," he said. But no one suggested parents couldn't be better informed about the drugs. " "Parents are just not aware about the drugs, about what they can do," said Suzanne Mervine, community relations director of the Learning Disabilities Association of Western New York. They need to ask, "Why are you prescribing this to my son or daughter?' " Mervine, whose three grown sons were diagnosed with behavioral disorders, explained why parents are quick to accept whatever the school district and physician decide. "You jump on it, because the kid is suffering, the parents are pulling their hair out and the school is sending the kid home every day, because he's not following the rules," she said. Shaina's story Her parents called Shaina "the sunshine of our life." The Dunkles adopted her at birth; Vicky Dunkle was there, in the delivery room, for her first breath, and in the pediatrician's office for her last one. She was a normal, healthy baby, who later developed asthma, urinary and kidney problems. By second grade, teachers noticed she couldn't sit still, focus or concentrate as well as she should. A school psychologist suggested Shaina could have Attention Deficit Hyperactivity Disorder and recommended she see a doctor. On April 1, 1999, the Dunkles took Shaina to the psychiatrist. "Within 45 minutes, we walked out with a prescription in hand and a diagnosis of ADHD," Vicky Dunkle said. Side effects from two other drugs led Shaina, in July 1999, to take Desipramine, an anti-depressant usually prescribed for mood disorders such as depression. She started with 10 milligrams a day, but the dosage steadily increased to 200 milligrams by February 2001, her family said. Shaina became more agitated, and one day she threw a pencil at one student and picked up a pair of scissors in a threatening motion. She also was gaining weight and had some urinary problems. Mrs. Dunkle took her back to the psychiatrist on Feb. 19. Leafing through the Physician's Desk Reference, he said the side effects were not caused by the drug, according to the Dunkles. He increased the dosage to 250 milligrams, and Shaina began showing improvement. One week later, Shaina fell in the school library, suffering a bump on her cheek. The Dunkles took her to their pediatrician's office in Bradford, about 30 minutes away. Shaina suffered her second seizure in the doctor's office. "Her chest got real big, she took two big gulps of air, and then she was gone," her mother said. Their daughter's death has driven the Dunkles to take their story as far as they can, from the small town of Smethport, Pa., about 95 miles south of Buffalo. "We know that Shaina knows what we're doing," her father said. "She'd probably tell us we're doing a very good thing, and she'd thank us for keeping her name alive." Driven parents Specifically, the Dunkles are seeking several changes in the way schools, psychiatrists and pharmacies treat children with attention-deficit disorder: . They think parents should demand to see the "packet insert" that pharmacies have for each drug. The insert for the drug Shaina took stated that: the drug had not been approved by the Food and Drug Administration for children; that an 8-year-old child on the drug had collapsed and died; and that it should not be used by anyone with urinary or kidney problems. . They would like to see the passage of the federal Child Medication Safety Act, which basically would prohibit school personnel from requiring a child to obtain a drug prescription as a condition for returning to school. . They want drug companies to conduct more extensive research on the effects of these drugs on children. . They want parents to be more aggressive and less trusting, by questioning doctors more extensively and seeking more second and third opinions. None of those changes would bring back Shaina, an active little girl who took tap, jazz and ballet lessons, participated in rifle twirling, played softball and the piano and loved to sing karaoke. But it would give her parents some peace. Shaina's grave The grave in Rosehill Cemetery has become a shrine to Shaina. The large granite headstone has her photo on it. More than a dozen ceramic angels, dolls and other figures cover her grave. Steven Dunkle mows the lawn around his daughter's grave, afraid someone else's mower might propel stones into one of the figures. The Dunkles realize what they've created may seem excessive to others. But they don't care. It's what they do to deal with their grief. "Most people don't like cemeteries," Steven Dunkle said. "But that's our favorite place." |
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