Monday, September 15, 2008

New York Times Magazine: A Family's Eye View of Bipolar Disorder

The first paragraph of Jennifer Egan’s article on bipolar disorder in the current New York Times Magazine is striking:

When Claire, a pixie-faced 6-year-old in a school uniform, heard her older brother, James, enter the family’s Manhattan apartment, she shut her bedroom door and began barricading it so swiftly and methodically that at first I didn’t understand what she was doing. She slid a basket of toys in front of the closed door, then added a wagon and a stroller laden with dolls. She hugged a small stuffed Pegasus to her chest. “Pega always protects me,” she said softly. “Pega, guard the door.”

Claire, of course, is not the patient. Her brother James, age 10, is. And one of the underappreciated ravages of pediatric bipolar is the effect these children have on their younger siblings, who learn to do what they can to protect themselves from unpredictable rages.

Egan is a journalist and a novelist who spent several months following different families with children who have received the bipolar diagnosis. While acknowledging that the diagnosis is over-used, she makes it abundantly clear that these children are not normal, and tend to be “wildly, explosively angry.” For example, 7 year old Joe’s mother describes a tantrum at Walmart, when she refused to buy him a video game, that “resulted in her having to sit on Joe in an aisle until store employees could help her wrestle him into the car… A recent rampage at school concluded with a 20-minute physical fight with a police officer….”

In describing some of the children’s evaluations at the University of Pittsburgh bipolar clinic, we are reminded how difficult it is to tease out ADHD from bipolar disorder, since three of the seven criteria for mania are also criteria for ADHD: distractibility, activity increase and talkativeness. Egan interviews Gabrielle Carlson, the director of child and adolescent psychiatry at the
Stony Brook University School of Medicine, who uses the apt phrase “diagnostically homeless,” to describe these extremely troubled kids who don’t quite fit known categories. She believes that that it’s crucial to come up with a clear diagnosis, although it’s not clear to me that she makes a strong case. Regardless of the diagnosis, out of control kids end up getting the same meds to protect themselves and others around them.

The article is long but keeps your interest. You’ll get a family’s eye view of what it’s like to live with these children, and you’ll understand why these kids end up rotating through a laundry list of medications.

In her concluding comments, Egan focuses too much on the kindling theory of bipolar disorder, a worn-out hypothesis which I put in the category of wishful thinking. Yes, it would be nice if bipolar disorder turned out to be a kind of epilepsy of psychiatry, preventable with early anticonvulsant meds. But the evidence is indirect and inconsistent, which even the father of the kindling theory, Robert Post, acknowledges.

I can’t blame her—it’s best to end an article on a hopeful note. Unfortunately, the science is still in its infancy, and we have to muddle through, guessing as we go, hoping that we’ll fall into an answer someday.

11 comments:

Bernard Carroll said...

Like you, Danny, I think the NYT article was a useful addition to the debate about childhood bipolar disorder. The article has taken some mean spirited hits on other blogs. It was actually more balanced than many commenters were willing to say.

We cannot wish away the problem while we argue about diagnostic boundaries. We cannot ascribe all childhood disturbances to social adversity and inequality. And we should not demonize clinicians like those at the University of Pittsburgh for offering medication trials.

I agree with your dismissal of the kindling hypothesis.

The most important need is to keep self-interested pharmaceutical companies and their paid KOLs out of the process of advancing our knowledge in this difficult field.

Keith Conners, Ph.D. said...

I too thought the NYT article was very good, showing more investigative skill than many case studies in the literature. I believe that the mistake of substituting irritability for explosiveness and grandiosity creates much of the mischief in the diagnosis of bipolar. In my mind the literature strongly supports only 2 risk factors for pre-pubertal bipolar: one or both parents have confirmed bipolar diagosis; and a clear diagnosis in the patient of dysthymia or major depression before the age of 12. I think that either endophenotypes or conclusive genetic information will be needed before diagnosis becomes reliable since the phenotype itself is too blurred with other conditions. I decry the use of the new antipsychotics for every kid who is explosive, aggressive and hyperactive.

Gina Pera said...

Bernard wrote: "The article has taken some mean spirited hits on other blogs. It was actually more balanced than many commenters were willing to say."

I agree, Bernard. The internet has become wildly overpopulated with Mad Pride bloggers. Presumably lacking insight into their own brain dysfunction, they rail against the medications that help so many people find more productive things to do. It seems they truly believe they are helping defenseless children, but they just lack objectivity.

One thing we do know about bi-polar disorder: there is an association with EFA deficiency. We could lobby the OB/GYN college to recommend EFA supplementation to all women of child-bearing age.

And, we could abandon feed-lots that pump unhealthy livestock full of grain and return to grass-fed meat (which naturally has Omega-3s) and take other steps to promote adequate EFA in the national diet.

Not all the answers will come from pharma. We already know important steps to take.

And thanks for mentioning the article, Daniel. It went a long way towards balancing the hit piece Gardiner Harris et al did on the "MGH 3."

Stephany said...

Bernard Carroll,

This is a great statement, and one of which I completely agree with:

"The most important need is to keep self-interested pharmaceutical companies and their paid KOLs out of the process of advancing our knowledge in this difficult field."

I have an extreme case with my daughter who is 20 years old and was misdiagnosed in 1999 with Pediatric Bipolar Disorder.

My concern as a parent who has lived a nightmare with their child, is to hope that others will not ever suffer this way again.

I am alarmed at the use of antipsychotics in young children, and seriously question the validity of the criteria for kids under age 10.

I hope to learn more from others here re: this topic, as it is an important one.

Stephany

James M. La Rossa Jr. said...

Perhaps some of you may recall a cover story in New York Magazine some years ago, in which the writer suggested that she and MOST professional Manhattanites were bipolar sufferers because of their "frenetic lifestyles." This enormously frivolous view is in stark contrast to Sunday's NY Times article. I found her narrative about the boy -- from his birth day to the last entry -- to be a richly descriptive group of snapshots showing the biological progression of Bipolar Disease in a child.

JC said...

Dr. Carlat, as long as one assumes this diagnosis is valid in children, the article is balanced. I agree, along those lines it was balanced. I certainly wouldn't go so far as to say it "added" anything to the debate. It was just another piece of journalism done on the topic.

I agree with you and others who say there is something definitely wrong with these children. But I absolutely reject your idea that it isn't such a bad idea to put these kids on medications -- at least just to protect themselves and others around them, or however it goes. The side effects are devastating, blah, blah. But more than that, this diagnosis leads many parents down the wrong road to helping their child. It's a dead end for many children. And anyone who is ignoring the longitudinal data that does exist about the course of this "illness" in this population is kidding themselves.

I know all this in small part, because I was misdiagnosed (at age 12) by a psychiatrist who is on staff at Biederman's clinic at MGH and who you would absolutely know by name, but I won't mention.

Misdiagnosis. Many or all of my symptoms met the MGH-Biederman criteria, but unfortunately, I don't have Bipolar disorder at all. I have been undiagnosed ten times over and apologized to. I was just like the great majority of children they are ensnaring today, who don't present with the classical disorder and will never develop it.

The idea that these are different children, or extreme, or that the situation is extreme, requiring B-52 polypharmacy is a cruel joke for these children who invariably are headed off a diagnostic and prognostic cliff.

I understand that you did your training at MGH, so you are probably enmeshed socially and professioanlly with these people, but the idea that this diagnosis is just over-used, obscures the extent of this problem.

If a child presents with the classical disorder and full blown mania and shows conventional episode patterns, then sure, diagnose the child. But is that what's happening at MGH and elsewhere?

Eitherway, putting young children on anticonvulsants or antipsychoctics, second generation or not -- is just not a sustainable lifestyle for a kid to live. And again, this ignores the life-altering trajectory the diagnosis itself imposes on the child separate from it's treatment -- namely, obfuscating other causes of irritability and the gamut of symptoms they think should lump together.

I'm 20 now and barely made it out of this alive, in more ways than one. I think it is easy for those unaffected, or couched in the profession to not recognize the enormous scope of challenges this illegitimate diagnosis entails outside of the office, in some childs day-to-day living, and ultimately, his or her survival.

Irritability isn't manina. Who is seriously doubting that? It doesn't turn into mania either. The logic of this is apparent, but we all seem to pretend things are more nuanced than they actually are.

Most psychiatrists have no appreciable training in trauma theory or practice or developmental psychology etc, and thus end up thinking it's ok to give these drugs to children as young as 2 with questionable home lives that deserve at least a minimal amount of serious examination.

Unfortunately, Biederman and others have no serious interest in looking at those issues.

I personally do not think the middle ground is accepting the diagnosis is "over-used" and that this field needs more "research". They won't do the relevant research because it will tumble their whole enterprise. As polemical as that sounds, it's the truth. And it doesn't do enough to say 'these kids are very troubled, this is all we can do,' because thats dishonest professionally (as a whole. Because in reality that's all anyone can do on planet Biederman and Wozniak.

I am a perfect example of the long-term wreckage those people have created and I'm not an exception. I'm the rule. A lot of people I know in the same situation were simply not as lucky as I am and will probably remain wreckage for the rest of their lives because of such misdiagnosis.

In my position, I sit here scratching me head. I honestly wonder what this "debate" is actually about.

As an aside, why is anyone speculating about another's cognitive capacities over the internet? (???)

Stephany said...

JC,

I am in admiration of you telling your story so eloquently, and being that you are the same age as my daughter (and she was dx at age 11)I am very happy you are OK.

I have witnessed first hand the devastating side effects of over-medicating my daughter, she has some permament damage to her body as a result.(verified by a Chief of Staff at Children's Psych unit in Seattle).

Thanks for sharing your story, I appreciate it.

--
James,

I have a question, about your reference to Bipolar being a "disease" and wonder out loud here if that is what it is considered in profession circles? or is it a disorder?

Respectfully,

Stephany

Mark p.s. said...

Science in forcing children to take drugs , instead of (forced) corporal punishment for hurting a weaker sibling. Learning to handle emotions and becoming responsible for ones actions is called growing up, not bipolar disorder.

James M. La Rossa Jr. said...

Stephany, I use bipolar "disease" and "disorder" interchangeably .... perhaps a throwback to the days of manic depressive illness as a diagnosis and its name evolution through the DSMs. Nothing purposeful, though I would say "yes" to your question of whether clinicians view bipolar as a disease-state. (As they do schizophrenia, for example.) Illness, disease, disorder--I defer to DC or, perhaps, William Safire on the correct terminology--but I am of the opinion that bipolar disorder is most certainly real.

As for JC, I too am impressed by his eloquence. Unfortunately, even such sober commentary cannot explain away children who scar themselves with knives and scissors, who throw themselves in front of moving vehicles, and who injure other children with little mercy or remorse. What can one say to those parents who cry themselves to sleep each night? Send them to military academies? I don't think so.

Generally, parents take their children for professional help as a last resort: they've read all the books, tried the kibbutz, and talked to fellow parents and have failed to "cure" their children. We cannot expect that a responsible physician would meet parents and children in such a state of crisis with, "she'll grow out of it!" JC is one of the lucky ones. For whatever reason, he seems to have made it to adulthood on his own. But there are many more kids who aren't so lucky.

Diagnosing and treating bipolar kids must be about as hard as it gets. The physician must "tease" the symptomology out of the children through the parent's narrative, which makes snake charming look like a cinch. Is it ADHD, part of the OCD spectrum with a chaser of MDD? Imagine the variables. So, I am sympathetic to the physician who uses medication to staunch the bleeding, so-to-speak. All so the child and the parents can make it through the day, and the next day, until the variables change again. Yes, I too am alarmed at the frequency in which the atypicals are doled out to kids. Yet the treatment the boy received in the NY Times article seemed appropriate to me.

I've given you a long answer to a short question, Stephany. Sorry. Still, the song remains the same. Don't let the argument about industry conflict cloud the fact that these kids and parents are in a sea of trouble, and someone has to step-up and help. As for JC, good luck to you young man. Keep up the good work. Best, j

Stephany said...
This comment has been removed by the author.
Anonymous said...

Stephany,

I have an unproven theory that many of the kids diagnosed with BP either have a sensory integration disorder or some form of autism. So you and I are in agreement.

I didn't see any hard evidence in the NY Time article but in the Newseek article about Max Blake, the kid who also has BP disorder, he screamed when he was placed in his bare feet on grass at 1 year old. That is a classic sign of SID.

SID is helped by Occupational Therapy and not meds. I can tell you from personal experience that any SI issues that I have as result of having a learning disability were greatly worsened by psych meds which I am tapering off of.

Forgive me if I told this story on this board but one day, I was having lunch at a food court with a friend. Some people started moving chairs and tables. I literally wanted to throw something at these people even though of course, I would never do it. I could definitely see why these kids would get so upset.

And SI issues are very common with people with autism. Like you, I worked in special ed, including dealing with students with autism. Sensory issues were definitely a factor. We also used behavioral skills that worked. I only recall one autistic student that I worked with being medicated and this person was on a stimulant.

AA