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With my book on attention issues still many months away from publication, I couldn't resist writing this op-ed, which appeared in today's LA Times:
Opinion
ADHD's Facebook 'friends'
Parents should be skeptical of a drug company's Facebook page on the disorder.
By Katherine Ellison
March 30, 2009
I'm the mother of a child diagnosed with attention deficit hyperactivity disorder. What this often means is I feel lonely and stigmatized, and turn to the Internet in search of support.
In other words, I'm just the kind of mom for whom McNeil Pediatrics, manufacturer of the popular, long-acting stimulant drug Concerta, is offering "practical, credible information" on its ADHD Moms Facebook page, launched last July.
"Our research is telling us that these women feel very isolated," company spokeswoman Tricia Geoghegan told me. "We saw these moms going on Facebook. They're going on WebMD late at night." The Facebook page was designed to "put the information in their comfort zone," Geoghegan said.
Naturally enough, this Facebook page, with its atypically non-interactive content, is especially comforting about the use of stimulant medications to treat ADHD. At a time of a growing national backlash against the $250-billion drug industry, parents taking this route -- even as a painful last resort -- can feel like pariahs. But McNeil, a division of Ortho-McNeil-Janssen Pharmaceuticals Inc., assures us we have lots of company -- and furthermore, that the outcomes can be fabulous.
"After dinner one night my son sat and played with Lego for hours it seemed, he looked so happy, peaceful, and I turned to my husband and said, 'We did good,' " wrote Michelle Goodman-Beatty, a mother of four, a recent medication convert and one of the page's more than 8,000 "fans." Another mom boasts that her daughter has made the honor roll and "become a more focused dancer."
I'm not against medication per se. Concerta helped our family during a crisis, allowing us the emotional wherewithal to make difficult, time-consuming changes in our behavior.
But that doesn't mean that McNeil Pediatrics is my "friend."
Check out, for instance, the "advice" about drug holidays -- periodic breaks from medication. Federally sponsored researchers in a follow-up phase of the largest ADHD study to date, published in the Journal of the American Academy of Child & Adolescent Psychiatry in August 2007, found this common practice to be supported by clinical evidence that the initial benefits of medication "completely dissipated" for many children as they matured.
These authoritative findings aside, Washington pediatrician Patricia Quinn, a paid consultant for McNeil, declares in a podcast conversation with a mom named Laura Willingham that medication breaks aren't a good idea for "a good number of children," including Willingham's third-grader, Jackson.
(Willingham, in a telephone interview from her Texas home, described herself to me as an "average-Joe mom," but also acknowledged she'd been recruited to the Facebook page by McNeil's Chicago public relations firm, drawn by her musings on Cafe Mom, a social networking site. McNeil also paid Willingham a fee and expenses to attend a New York conference on adult ADHD.)
Kids like Jackson "really do need to continue on their medication because their ADHD symptoms are continuing to interfere with their functioning," says Quinn, who characterizes such interference as "problems with organization or listening or following directions or even interacting with other children."
Whoa, that describes quite a lot of kids, don't you think?
Quinn, herself the mother of three ADHD children, continues, in a tone that sounds urgent: "It's important for the family interaction. I know that by keeping my son on medication after school and on weekends and on holidays, we could have family vacations. We even went to Disneyland in an RV!"
My two Facebook friends then proceed to allay listeners' worries about reported side effects of the stimulants with some artful misinformation. "I did my own research," says Willingham, "and found that children who did receive treatment, whatever the path, typically have lower rates of addiction."
In fact, this long-lived claim was disputed in a peer-reviewed study last year in the American Journal of Psychiatry, which found there was "no evidence that stimulant treatment increases or decreases the risk for subsequent substance use disorders" in young people with ADHD. But Quinn doesn't correct the record.
Willingham goes on to say she'd feared the drugs would stunt her son's growth, until she talked the issue over with her pediatrician. "He told us we could expect some weight loss or no weight gain," she says, "and we talked about how to pad his diet."
Now, here's what I mean by "artful." My Facebook chums don't mention height, which you can't make up by "padding," unless you "pad" with growth hormones. But height is indeed an issue, according to that federally sponsored study, which found children on meds lose on average about three-fourths of an inch after three years, apparently permanently.
When I asked Geoghegan, the McNeil spokeswoman, why the company didn't make sure its podcast was accurate, she said, "Patricia Quinn is a doctor. I'm not. It's her medical opinion. Plus, she's a mom. Remember, this is moms talking to moms."
Oh, right! Shame on me for forgetting!
We ADHD mothers are really in a pickle. There is so much misinformation and disinformation out there about brain disorders and drugs and how best to cope with the difficult children we love. There is so much that even top scientists still simply don't know. What's more, a few of these top scientists have been revealed by recent congressional investigations to be taking questionable payments from ... yep, pharmaceutical firms.
The difficulty of doing our own, independent research when we're feeling panicked, isolated and stigmatized makes it all the more tempting to rely on people we feel we know, like the smiling Facebook moms or the site's former paid celebrity hostess, Deborah Phelps. (Phelps, mother of Olympic champion Michael Phelps, left the page in January, for reasons she and Geoghegan say were unrelated to the dust-up arising from a photo published that same month of Michael with a bong.)
Alas, there's still no such thing as one-click parenting. Our choices about how to treat our children's emotional and mental travails surely shouldn't be as lonely, painful, costly or shaming as they are today. But virtual "friends" aren't the answer.
Katherine Ellison is a Pulitzer Prize-winning former foreign correspondent. Her latest book, "Hotheads: A Mother, a Son, and a Year of Paying Attention," will be published next year by Hyperion Books.
posted by Kathy @ 8:27 AM
33 Comments:
Dad graduated from Harvard. Embarrassed by his impoverished upbringing, he swallowed his pride and waited on JFK and friends in the dining hall.
Mom graduated summa cum laude from Radcliffe. Her dad, an Admiral, had run away from home at 15 and joined the navy. (His father wouldn't buy him shoes for school.)
They began a family with great expectations. To say that I was profoundly disappointing to them is like saying Vince Lombardi didn’t like to lose.
It was my fault. I refused to apply myself in school. To them, my unwillingness to concentrate on academics was unimaginable. I could become president if only I would study.
I realized deep down I was a disgrace and hated myself.
At 40, my wife read an article in the newspaper that described me, perfectly, and I saw a physician, then two more. All agreed. The prescription began to work immediately and for the first time in my life, I could hear. I COULD HEAR.
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For many, ADHD and its subtypes, don’t exist. To them: once I was blind, but no longer.
This is a beautiful story, and I'm sure something that's true for so many people. Thanks so much for writing.
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