As ADD Research Continues, Parents Seek Alternatives

The decision to use Ritalin to control her son’s inattention and lack of focus in school was a reluctant one for Cindy Welch.

Three years ago, her son, Joseph, now 10, was diagnosed with attention deficit disorder--a condition characterized by impulsivity, inattention, and the inability to concentrate.

ADD and attention deficit hyperactivity disorder are the most commonly diagnosed behavioral disorders in American children, affecting an estimated 2 million school-age youngsters in the United States, according to the National Institutes of Health. But the medical community is still unclear about the best method of diagnosis and treatment. In fact, last November, an NIH panel called the lack of a generally accepted method of diagnosis, treatment, and follow-up for those children “a major public-health problem.”

In the absence of such a consensus, and worried about the effects of medication, parents such as Ms. Welch have turned to controversial alternative remedies.

“There will never be a shortage of people seeking alternatives,” said Mark Unger, the president of the New York City-based ADD Action Group, which provides information about alternative treatments of ADD and learning disorders. Mr. Unger started the 1,500-member group, to which Ms. Welch belongs, after his niece and nephew were diagnosed with ADD.

Besides medication, the kinds of treatments being used include behavior modification, diet management, herbal and homeopathic preparations, and biofeedback. Currently, no specific medical test to diagnose attention deficit disorders exists.

Deciding About Ritalin

As a very young child, Joseph Welch was extremely active and difficult at times, his mother said. But she felt Joseph was just “being a kid” until he began having problems completing school assignments. At the suggestion of his 2nd grade teacher, Joseph was evaluated by a psychologist at the public school he attended here in Newburgh, a Hudson River city 70 miles north of New York. The school psychologist concluded that Joseph did not have ADD. But as he neared the end of the 3rd grade, Joseph continued to have difficulty completing his work.

He was evaluated again, but this time the school found that he showed signs of ADD. When Joseph was 7, his pediatrician prescribed Ritalin, a brand name for the stimulant methylphenidate hydrochloride.

“I didn’t feel we had a choice,” Ms. Welch said of the decision to prescribe the drug.

Joseph became more alert in class, but he suffered from headaches, weight loss, mood swings, and sleeplessness. The pill Joseph took twice a day made him “feel weird,” he said, and after a month, Ms. Welch took him off Ritalin and began searching for a new way to help her son.

Ms. Welch--who has used alternative remedies to treat asthma in both Joseph and his older sister--experimented with treatments such as biofeedback, diet changes, and homeopathy. Biofeedback, which seeks to train people to control certain physiological responses, proved to be time-consuming and not very helpful. But the Welches had success with diet management--no dairy or sugar products--and homeopathy, in which plants, minerals, and other natural substances are used to stimulate the body to heal itself.

Now a 4th grader, Joseph attends special education classes at the private Bishop Dunn Memorial School and uses homeopathic medicines to treat his asthma and ADD.

Last summer, Joseph took up a hobby his mother never thought possible: building model airplanes.

“He sits for hours” working on the models, Ms. Welch said. “For someone with ADD, it’s a great improvement.

“I look at Joseph’s total, overall health, and I know that I made the right decision” in changing his treatment, she said.

Researchers’ Focus

The research community, meanwhile, has focused primarily on more-conventional medications and on behavior modification.

The long-term effects of Ritalin, the most commonly prescribed medicine for treating ADD and ADHD, have not been well-established. The increase in the use of the drug--total prescriptions dispensed for Ritalin grew 260 percent from 1992 to 1997--has intensified concerns about the use, overuse, and abuse of the drug, according to the NIH. Researchers have yet to examine the benefits and risks of any drug used to treat ADHD beyond a 14-month period.

“We know the medication works well in the short-term,” said George J. DuPaul, a professor of school psychology at Lehigh University in Bethlehem, Pa. Mr. DuPaul is conducting a study on early-intervention programs for children ages 3 to 5 who are at risk for ADD.

The preliminary results of the study, which will end in 2001, show that children who take part in early-intervention programs have less severe symptoms of add and are less aggressive.

Mr. DuPaul, who delivered a statement on behalf of the American Psychological Association to the NIH panel last November, questions whether medications do enough to address the academic and social problems connected to ADD. But he said he considers such alternative treatments as biofeedback and homeopathy to be experimental and not well-researched.

Choosing Medication

A lot of confusion remains about the best way to diagnose and treat ADD and ADHD, acknowledged Mary Robertson, the president of Children and Adults with Attention Deficit Hyperactivity Disorder. The Landover, Md.-based nonprofit advocacy and support group, known as CHADD, has about 35,000 members worldwide.

“There’s not going to be a simple, single answer,” Ms. Robertson said.

CHADD is skeptical about the alternative treatments and says parents might do better spending their time and money on approaches with more of a track record, such as medications and behavioral modification.

The group has been criticized in the past for accepting donations from Ciba-Geigy, now Novartis A.G., the manufacturer of Ritalin. But Ms. Robertson said pharmaceutical companies have no decisionmaking power over her group.

CHADD’s goal is to help people make informed decisions, Ms. Robertson said. “It is a terribly difficult decision to put a child on medication,” she said.

Dr. Lawrence Diller, a behavioral pediatrician in Walnut Creek, Calif., agreed.

“Parents who put their children on Ritalin don’t take the action lightly,” said the author of Running on Ritalin, a 1998 book about the surge in the diagnosis of ADD and the increase in Ritalin use.

“They don’t come in and demand Ritalin,” Dr. Diller said of parents. “They come to the conclusion that this problem is not within their control or their child’s.”

Dr. Diller sees the increase in the diagnosis of ADD to be a reflection of “living imbalance rather than a chemical imbalance. The demands on children have increased, but the social supports for them have decreased.”

“I have no doubt that Ritalin works in the short term,” he said, “but I don’t think it is the moral equivalent to more appropriate parenting and better schools for our children.”

‘Lots of Energy’

Bonnie, an interior designer who lives in New York City and asked to be identified only by her first name, hopes a day will come when her daughter, Nicole, doesn’t need Ritalin.

Nicole, now 11, was 5 when she was diagnosed with ADHD.

The 5th grader stopped taking Ritalin for a week last month to find out how she does without it. It was her second break from the drug in two years. She lasted for three days on her first break in the 3rd grade.

During the week, Nicole was “livelier and more personable, but she was also more fidgety,” her mother said.

Nicole also noticed differences: The Ritalin calms her, but it also makes her edgy and grumpy after school. At the Trevor Day School, a private school in Manhattan, she takes Ritalin each morning and after lunch.

Nicole’s mother recalls clearly the day the head of her daughter’s school suggested that she might have ADD: “I had no idea what that was. All I knew was that I had a kid with lots of energy. Sometimes, I felt like she was running circles around me, literally.”

Bonnie started to read about behavioral problems and decided to join CHADD.

Nicole is no longer as impulsive as she used to be, her father, Jay, said, and she is capable of completing tasks over a longer period of time. But her parents wonder what the future will hold as Nicole advances in school and needs even more concentration.

“I don’t want to lose Nicole’s personality to the medication,” Bonnie said. “I hate the thought of losing one thing to gain another.”