The Mommy Brain Blog

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.

I am in awe of 83-year-old Olga Murray, featured in a wonderful San Francisco Chronicle story Sunday (and yes I know it's Thursday). You have to read this story. Murray lives in Sausalito, but travels regularly to Nepal, where her extraordinarily successful program, the Nepalese Youth Opportunity Foundation gives goats and other domestic animals to families in return for a promise that they won't sell their adolescent girls into slavery. Then the foundation pays for the girls' education. Reading this story is inspiring -- and a kick in the pants for all of us to think more and harder about the world around us...

...while worried and outraged about the fate of the stimulus package and Obama's depressingly short honeymoon, I've been finding little bits of joy and interest worth sharing:

A bellydancing class last week with the fabulous Julie Flynn Siler , the highlights of which were learning, from the master teacher,Dhyanis how to "polish your jewel" and practice drawing an exaggerated alphabet with your upper rib cage, while driving. (There will soon be a law against this in California.)

Belatedly reading a wonderful piece on animal assistants , including a parrot that helps talk down a guy given to homicidal rages ("You're safe, Jim. I'm here, Jim.")

Discovering an old, lovely song I'd somehow never heard before by Gil Scott Heron called "I Think I'll Call it Morning."

And, more on the bittersweet side, watching an amazing 2002 documentary called "Refrigerator Mothers", about the women who were blamed for their children's autism from the 1950s-70s.

While of course I should have been working on my book, sometimes distractions are essential...

How many Nobel prizes does Al Gore need before he can get some respect?
Knowing he'd testified yesterday before Congress but not seeing anything in the New York Times, I went online, only to find the snarkiest, most empty story in the Washington Post, just making fun of Gore, pulling out all the old cliches from the 2000 election. This is one day after Gristreported that global warming ranks at the bottom of a long list of concerns -- war, the economy, Social Security, health insurance, education, and you name it, whereas none of these issues will mean anything if we get swamped by changes in climate. It's one more bit of evidence of the ferocious power of denial -- that, and the sad decline of newspapers.

This morning, the New York Times , with that arresting photo of a baby with a camera strapped to its head, raised an issue I've been grappling with, in its story on research scientists who use their children as subjects.

For the past year, I've been working on a memoire/reportage on Attention Deficit Disorder, a glitch I share with one of my sons, and am using our lives to illustrate issues that millions of parents are coping with, since ADD, most of the time, is a shared family trait. The project has been almost completely a blessing, giving me the time to more fully understand a disorder that has long threatened our family's equilibrium, and to seek out and apply the best treatments among a confusing array. But it has also brought up some ethical issues, some of which are raised by the Times today. Is this kind of scrutiny fair? How much should be revealed; what must be kept hidden? The photographer Sally Mann took nude pictures of her own children -- were there any larger issues that justified that?

One way I've coped with these dilemmas is by, from the start of my work, assembling a Brain Trust – a group of psychiatrists, close friends, and relatives with whom I check in frequently for judgment calls and readings of early drafts. If there is one thing I've learned, it's that a parent's vision of his or her own child is almost always obscured by memory, fear, and desire. Sometimes –maybe even most of the time -- it takes a village to see clearly....

Last night I read the last page of "The Grapes of Wrath"
to my ten-year-old son, with whom I've been steadily progressing through several classics I missed growing up. My worries that some of Steinbeck's material might be a bit too intense have been counterbalanced by the facts that:

a) He's learning about a world outside our privileged 'burb;
b) He has been sleeping through some of it anyway;
c) I just can't bring myself to keep rereading Roald Dahl, much as we both love him.

What drove me to blog, however, is more this question: How about that Ma Joad? Of all the literary portraits of mothers, was there ever a more haunting, complex icon? Haunting, especially, in the sense that she, absolutely alone, and by pure emotional force, kept her "fambly" going?

"She's a fictional character, mom!" my son said, when I expressed my admiration.

He's right, of course. So why is it that I've already gotten in the habit of imagining Ma Joad wagging her stout finger at me when I give way to anger or crave solitude or forget to put the gravy in the corn pones....?

p.s. Does anyone think Kafka's "The Metamorphosis" would give my son nightmares?
p.p.s. Thank you, Jennifer! You made my day!

It couldn't have been a better night to see Revolutionary Road -- on the last day of a loooong winter break in which my obviously bewitched laundry hamper and kitchen sink were continually overlowing, and the bickering over Xbox-playing limits was like being stuck in an elevator with hyenas. Towards the end, I was one of the few people in the theater smiling -- not just at the amazing performances but at the thought that maybe, at least in some ways, things have gotten better...