04.01.09

How Science Screwed My Kids

When a major study said kids with ADHD could benefit from drugs, we gave my son Ritalin. Then he became manic and delusional—and now the study’s researchers say they might have been wrong all along.

Jason raced around from dawn to midnight, bouncing from one activity to another, throwing prolonged tantrums at the slightest frustration. The day he picked up a butcher’s knife and threatened to hurt himself was the day my husband and I decided to call the pediatrician.

“Not normal,” she said. “Take him to a child psychiatrist.” We did, and the psychiatrist mistakenly concluded that there was nothing wrong that five or six family-therapy sessions couldn’t fix.

It took more than 20 medication trials, a dozen hospitalizations, and four full-time special schools before Jason learned to manage his emotions and regulate his behavior.

The tantrums became more frequent and longer. They could be triggered by the oddest things, like an uncomfortable sock, or a request to polish off a math assignment by adding 8 plus 9. A brilliant athlete, after a hat trick on the soccer field that made every boy in town want to be his best friend, Jason would come home and start hurling furniture at us. We found new child psychiatrists and added a psychologist. “Let’s rule out ADHD,” they advised, and prescribed Ritalin.

Six years younger than Jason, our daughter Rebecca was darling and well-behaved. Her private-school classmates were reading Dr. Seuss in kindergarten. But late in the first grade, Rebecca still couldn’t decode Green Eggs and Ham. If you taught her to read a new word, she would find it unrecognizable three minutes later. Her mirror writing was exquisite and unintended: MOM UOY EVOL I.

Rebecca liked to stare dreamily into space, make giant balls from rubber bands, and repetitively sharpen her pencil collection. The pressure of first-grade homework made her throw fits. Yet adults delighted in her poised, emotionally insightful conversation. We took Rebecca to a neuropsychologist, who, after three days of testing, diagnosed superior intelligence, dyslexia, and ADHD. Once again, our psychiatrist prescribed Ritalin. She assured us that prescription stimulates—Ritalin, Concerta, Adderall—can help variably attentive children like Rebecca focus, much as they help some overactive children like Jason calm down.

It was perhaps no accident that my family first confronted the “to Ritalin or not to Ritalin” question in 1999. That was the very year pediatric psychiatry went giddy with excitement over the initial findings of the National Institute of Mental Health Multimodal Treatment Study of Children with ADHD, better known as the MTA.

The MTA was a study to listen to. It was an ambitious, multiyear longitudinal study of 579 children diagnosed with ADHD, conducted by a team of first-class researchers and funded by the federal government. It came at a time when doctors were being criticized for blindly prescribing powerful adult psych meds to children on a trial-and-error basis. And its preliminary results, published less than one year into the study, gave big-city psychiatrists and educated parents the confidence to use stimulants to address children’s behavior. The MTA’s seminal 1999 finding was that children diagnosed with ADHD fared better with medication or with a combination of medication and therapy, than with therapy and community care alone.

So, in 1999 and again in 2005, I did what I thought I really ought to do for my bright, talented kids who upended family life and underachieved in school. On the promise and gospel of the MTA, I gave them Ritalin.

Jason took a low, starter dose of the drug for about a week. He quickly catapulted from merely hyperactive and tantrum-prone to manic and delusional. To end the mania, doctors prescribed toxic cocktails of anticonvulsants, antidepressants, and antipsychotics. We later learned that one of the risks of giving stimulants to children is that the medications may unmask an undiagnosed mood disorder. This is what seems to have happened to Jason, who was diagnosed with bipolar disorder based on his symptoms and reaction to Ritalin. It took more than 20 medication trials, a dozen hospitalizations, and four full-time special schools before Jason learned to manage his emotions and regulate his behavior.

Nevertheless, my husband and I were so convinced by the MTA study’s “proven” benefits of stimulants—and the uniqueness of each child—that we gave Ritalin to our daughter, even after our son’s experience with the drug had been a disaster. Rebecca got cranky on the first trial of stimulants and showed no improvement in school, so we took her off Ritalin after about a month. But she did a better job paying attention in school and received higher standardized-test scores when we gave her a different stimulant called Concerta a few years later. The stimulants also seemed to make her less anxious and less emotionally volatile.

Because of the early findings of the MTA study, my family has spent the past decade on an often frightening odyssey of stimulants like Ritalin and Concerta. Which is why last week’s news from the ongoing MTA study was alarming. The study’s researchers have now announced that, in the long term, drugs don’t work a lick better for treating ADHD than behavioral therapy and the usual community supports. And there are accusations that the researchers sought to suppress these conclusions so as not to be embarrassed by the more drug-positive results they released in 1999.

Published online this month in the Journal of the American Academy of Child and Adolescent Psychiatry, the latest data crunching from the MTA shows no long-term benefits to children of stimulant therapy after eight years. A 24-month MTA follow-up study had demonstrated some medication benefits, but neither a 36-month MTA follow-up nor the recently published eight-year follow-up showed significant advantages to medication-inclusive interventions over medication-exclusive interventions. Even with meds, the study’s new findings indicate, children with ADHD are more likely than other children to develop into adolescents with problems like delinquency (27.1 percent vs. 7.4 percent) and substance abuse (17.4 percent vs. 7.8 percent).

It’s enough to make you crazy. Once considered proof-positive of the benefits of medication, the MTA study now offers grounds for doubt about medication for ADHD. If it’s long-term benefits families are looking for, science is no longer clearly on the side of using drugs like Ritalin, Concerta, or Adderall.

Now that the proven long-term benefits of traditional ADHD drugs are nil, parents have to aggressively reassess the risks of giving their children medications for their short-term advantages. Many families are prepared to deal with mild side effects like dry mouth, diminished appetite, and benign heart palpitations. But ADHD medications are believed to have more permanent effects as well, stunting some children’s growth and making other children sick.

Should parents who have medicated their children based on the results of federally funded research be angry about the latest findings? My husband and I find we are not angry. Some MTA researchers (accused of being “anti-medication”) are charging colleagues (accused of being “pro-medication”) with having knowingly understated evidence that stimulant medications do little good after two years of treatment. Yet I don’t see any clear evidence of significant misconduct in reporting research findings. The real story here seems to be one about clinicians and consumers eagerly latching onto the early results of an incomplete multiyear study.

Of course, Big Pharma was only too happy to latch onto the early results as well. It’s hard to overlook the fact that after the 1999 MTA results were reported, the drug companies went hog wild, mass-distributing copies of the federally funded study to physicians nationwide, hoping to expand the market for stimulants. It worked: The ADHD drug market, which now includes both stimulant and non-stimulant preparations for children and adults, is expected to reach $3.3 billion in annual sales by 2010.

The relationship between drug companies and child psychiatry had parents fuming even before last week’s MTA announcement. A leading child psychiatrist and ADHD researcher, Harvard’s Dr. Joseph Biederman, has published studies purporting to show that aggressive intervention in children with ADHD can “prevent” substance abuse, and that taking ADHD medication does not lead to illegal drug abuse. But should parents be willing to rely on Biederman’s research? The doctor has yet to explain how a supposedly objective and independent scientist could promise Johnson & Johnson in a PowerPoint presentation that his "planned studies of [its] medicines in children would yield results benefiting the company." One of the most influential child psychiatrists in the world, Beiderman is under investigation for violating federal law by concealing $1.6 million in payments and grants from drug companies. I do get angry about Biederman since, backed by drug-company dollars, he has pushed the use of antipsychotic medication in children. Based on his research, Jason was prescribed medications that made him eat compulsively, drool, and slur his speech, while putting him at risk of a non-reversible neurological tic disorder known as tardive dyskinesia.

It remains to be seen if the MTA study will reshape child psychiatry. Children have not been well served by the recent emphasis of drug therapies over other interventions. Most psychiatrists manage medications and leave behavioral therapy to others. With managed care in full swing, insurance companies are not eager to pay for time-consuming, $200-an-hour behavioral talk therapy. Parents sold on the idea of medication-only interventions were relieved of the need to miss work and take kids out of school for frequent and humiliating family-therapy sessions. But if therapy works as well as medications and with fewer side effects, parents may need to rethink priorities. My own faith in medications has been tested, and I am more skeptical and cautious than I was a decade ago. Rebecca still takes stimulants, but Jason, I am happy to report, is thriving medication-free.

Grace Poole is a pseudonym.