Monday, November 29, 2010

For ADHD, lots of snake oil, but no miracle cure

From Katherine Ellison, a Pulitzer Prize-winning journalist and author of the new memoir "Buzz: A Year of Paying Attention," in The Washington Post:

As the mother of a teenager who got a diagnosis of attention-deficit/hyperactivity disorder in 2004, I wasn't surprised to read the new report from the Centers for Disease Control and Prevention that said the number of ADHD cases in children jumped by 22 percent between 2003 and 2007 - an increase of 1 million kids.

From the day my son started school, I've watched popular awareness of disabling distraction rise, to the point where it's easy to believe the CDC estimate that one in 10 U.S. children - a total of 5.4 million kids - now has ADHD, as reported by their families. This might even be positive news, in that at least some kids who need medical attention are getting it. Except for one problem. Growing along with those numbers is one of the most aggressive, lucrative, bewildering and often just plain useless sales forces humanity has ever seen - call it the ADHD-industrial complex.

This includes not only the U.S. pharmaceutical industry, which by one measure sells more than $5 billion worth of ADHD medications each year - and which only in the United States and New Zealand may market directly to the public - but a growing league of all-but-unregulated, usually costly and sometimes wildly imaginative alternatives, including herbal supplements, complicated exercise regimes to stimulate specific brain regions, magnetic mattresses, personal coaches and therapy "assisted" by dolphins.

If modern mothering is madness, what metaphor might suit the straw-grasping of parents of children with this disorder, whose main symptoms are distraction, inattentiveness, forgetfulness and impulsivity? The ADHD industry's exuberance matches the vulnerability of its target market: millions of desperate parents who, given the strongly hereditary nature of ADHD, are often just as distracted and impulsive as their progeny.

Oh, did I mention that I got my own ADHD diagnosis at age 50, just a few months after my son's? This double whammy inspired me to spend a year investigating the grab bag of symptoms constituting the current definition of ADHD and trying to figure out the best ways to cope. I was extra-motivated to seek non-pharmaceutical treatments when my son balked at continuing to take stimulant medications after a year-long trial - about the average amount of time kids will keep taking them, as I later learned, and a big reason pills usually aren't reliable as a single or long-term strategy.

In the course of my year of focusing on distraction, I got my head examined by Daniel Amen, the legendary Southern California clinician who says he can detect ADHD with a brain scan for $2,000; tried stimulant meds for myself; stretched my equity loan to pay for scores of sessions of neurofeedback (a computer-based treatment in which a therapist helps you train your brain to function better); and even went on a five-day silent meditation retreat, which I only just managed to survive.

I fed my son fish oil capsules until the aftertaste made him rebel, subjected him to two days of neuropsychological tests ($4,000), hired pricey tutors and summoned my nerve to lobby public schools to grant him special accommodations, such as being allowed to chew gum while studying algebra. We did not, however, after due consideration, send in his hair follicles for lab analysis to detect heavy metals or purchase custom-made colored contact lenses, on the chance that his problem was not actually ADHD but a controversial perceptual disorder known as scotopic sensitivity syndrome.

I also skipped the dolphin therapy after learning enough to suspect that it was not only a waste of money but really unkind to the dolphins.

I've got plenty of company in my quest for non-pharmaceutical techniques. A 2003 survey of parents of children with ADHD in Boston found that 54 percent had tried non-medical treatments. Yet even though we may have lots of good reasons to distrust Big Pharma, medication is still the devil we know. It has many problematic side effects and carries social stigma, but it also has decades of research establishing its upsides and downsides.

This isn't usually true for the alternatives. Children's livers may be overtaxed by megavitamins. Too much ginseng can raise their blood pressure. Parents may exhaust their savings on brain scans and exercise programs that lack evidence of their effectiveness. And despite often-Herculean efforts on the part of their families, millions of kids may still end up fulfilling the direst outcomes of this diagnosis, including higher rates of high school dropouts, unemployment, teen pregnancy, car accidents, depression, anxiety and jail.

I was lucky: I was in a nice, supportive marriage, and my contract to write a book on the subject gave me a handy professional excuse to call up experts for advice. Even so, I joined many other parents in anxiously watching my son's self-esteem erode while a succession of teachers judged him lazy, troublesome and - they implied - poorly parented. If I, with all my advantages, had so much trouble dealing with the academic train wreck, how much can we expect of parents who may be divorced, working overtime and/or intimidated by hucksters online and off, including the flood of self-help books with such optimistic titles as "Dr. Bob's Guide to Stop ADHD in 18 Days?"

I am relieved to report that despite many setbacks, my son and I made some progress by the end of my year. Looking back, I suspect that his time on medication helped us out of a crisis and gave him a useful taste of what it felt like to have more self-control. It may also be true that our budget-breaking neurofeedback treatments helped curb his irritability and my anxiety.

At the same time, I discovered that some of the most effective interventions are also the simplest and cheapest. Such as educating myself enough to know how much of my son's behavior is truly within his control. And getting in the habit, with my husband, of finding something to praise about him every day ("Way to breathe!" we began, although we soon found more substantial causes for celebration).

Regular physical exercise, I found, can also be hugely helpful - and this strategy is backed by a significant amount of research. Russell Barkley, a leading ADHD researcher, cites studies showing that rigorous exercise can increase the brain's capacity for willpower and emotional self-control, arguably the most important skills lacking in many of the clinically distracted. So too, he says, can maintaining adequate levels of glucose, which has led me to stop pestering my wiry, active son about his many trips to the refrigerator.

Another useful (and cheap) strategy was abandoning my sheepishness around my son's teachers and principals and visiting them early, insistently and often. Despite growing awareness about ADHD (the National Library of Medicine lists more than 18,000 papers and articles on the disorder), the continuing depth of misunderstanding in schools can be startling. In one school district in Massachusetts, I was told by Harvard neuroscientist Todd Rose, teachers have even made ultra-restless kids wear lead vests to weigh them down.

Probably most important, I learned that it's key for a parent of a seriously distracted child to keep calm. Children with ADHD can be unusually provocative. Punishments, particularly the corporal kind, are notoriously ineffective. So whatever it takes to understand your own role in the family conflict and tone down your reactions may yield benefits that last a lifetime.

None of this has "stopped" my son's ADHD or my own. We still struggle and suffer, individually and together. I still take meds, on occasion, and he knows they're there if he decides they can help him again. Meanwhile, we play Ping-Pong, talk and laugh together more than we have for years, and, as much as a 15-year-old will tolerate, we even occasionally hug.

Our journey to this somewhat better place took a lot of work, a lot of persistent trial-and-error and a lot of self-criticism. And all of that, in turn, took a heck of a lot of time and attention - commodities in sadly short supply for many of us. Still, we did save on the ginseng, magnetic mattresses and dolphins.