Populations

The Bipolar Child - An Historic Book

The book that put an illness on the map.

There have been a great many ground-breaking books in the field of medicine and psychiatry, but very rarely does one come along that literally puts an illness on the map. To truly comprehend the impact of The Bipolar Child: The Definitive and Reassuring Guide to Childhood's Most Most Understoon Disorder by Demitri Papolos MD of Albert Einstein University and Janice Papolos, we need to cast our minds back to BBC (before The Bipolar Child):

"The Bipolar Child" (Broadway Books) was published in Jan 2000. A PubMed search for "pediatric bipolar disorder" reveals that the first article substantially devoted to the topic appeared in 1995. One of the entries from that year was a review article that concluded there was nothing much to review. "Pediatric-onset bipolar disorder: a neglected clinical and public health problem," read the heading.

The years 1995 and 1996 saw the publication of a handful of articles, namely from Joseph Biederman MD and Janet Wozniak MD of Harvard. Then in 1997, Barbara Geller MD of Washington University (St Louis) broke into publication with a review article. Zip, zilch , zero quantifies 1998’s output, and 1999 reprises a bit more Biederman and Wozniak and Geller.

Modifying the search to "child bipolar disorder" yields a further small trickle of articles, with emphasis on small and trickle.

So ten years ago, Dr Papolos was staring into an empty research cupboard. Moreover, Dr Papolos’ own list of publications up to that time involved behavioral genetics and brain science rather than pediatric bipolar. As for clinical experience, child and adolescent psychiatry is not Dr Papolos’ field and his own interest in bipolar kids was rather late in coming.

So imagine: You are the co-authors of an extremely successful book called "Overcoming Depression." It’s 1996 or 1997 and it’s time to consider a new project, such as the "definitive" book on a topic that does not exist for which there is virtually no published research and for which you have precious little authority. Your own publisher passes on your proposal, but somehow you manage to find a taker, and in 1999 it’s time to turn in your manuscript. Your new publisher, it turns out, has no problem with the words, "bipolar" and "child," so long as neither one appears with the other in the same title on the same cover of the same book.

This has to be the dumbest idea since the Edsel, you must be thinking.

The book lands in the bookstores and something totally improbable happens – "The Bipolar Child" sells 70,000 hard-cover copies in its first six months, is featured on "Oprah" and "20/20," is part of a "Time" magazine cover feature, and – whoa! – back up. What happened?

The Surprise Best-Seller

Let’s take a closer look:

First, although the research into pediatric bipolar was virtually nonexistent a decade ago, researchers such as Drs Biederman, Wozniak, and Geller and were rapidly breaking new ground, and were on their way to publishing their own landmark studies. Mainstream psychiatry was beginning to pay attention. Momentum was building.

Second, when it came to challenging entrenched beliefs, there was no better person for the job than Dr Papolos. Part of Dr Papolos’ training at New York State Psychiatric Institute of Columbia University included time with Robert Spitzer MD and Jean Endicott PhD. This was back in the seventies when these two pioneers were leading a revolution in psychiatry in the form of developing the modern DSM. Unlike today, the entire field was fluid and wide open. Eager young residents such as Dr Papolos were encouraged to closely observe the patients on their rounds, keep an open mind, and take part in discussions.

From this experience, Dr Papolos learned that the DSM was never meant to be cast in stone, that it was intended to change as new knowledge and insights came to the fore. Thus, years later, when he became interested in a population that defied all conventional diagnostic wisdom, Dr Papolos instinctively followed the spirit rather than the letter of his own mentors’ achievements.

Other things were going on, too. For one, the new phenomenon of the internet provided a medium for concerned parents to communicate and start organizing. Listserves such as BPParents and organizations such as the Child and Adolescent Bipolar Foundation gave parents a powerful new voice.

A lot of misinformation has been spread on how drug companies are driving the trend toward diagnosing children with bipolar, but the reality is that this is a movement that has always been led by the parents. Janice and Demitri Papolos were simply smart enough to pay attention. In the stories they heard, the Papoloses found more than enough source material for their book.

Finally, Dr Papolos had the ultimate collaborator in the form of his wife, Janice. Dr Papolos may have been the one with the MD, but it was Janice who possessed perfect pitch for connecting with concerned parents. Most experts, even with ghost writers, fail miserably on this count. Janice delivered a manuscript that literally hit readers in the gut.

In retrospect, the only surprise to this surprise best-seller was that no one saw it coming.

Parents Respond (And So Do Critics)

Right off the bat, parents started using "The Bipolar Child" to educate their children’s clinicians and educators. A sampling of reader reviews on Amazon:

"With this book in hand, I approached my son's first psychiatrist who had been treating him for ‘generalized anxiety’ for over a year, regardless of our input about his therapy and meds not working. I told him that my son was a dead ringer for bipolar and that we had a history of Bipolar within our family. He insisted that our son was NOT bipolar. I immediately sought out another child psychiatrist that primarily treated BP children and we eventually had our suspicions confirmed. Without this book, I could not have done it."

"I found it so useful that I purchased a copy for our son's school to keep on hand as a reference."

A further sampling of the reviews provides an insight into what this book has meant to parents:

"I've been criticized for so long, and lived in shame because of it. I now see that I'm doing everything right and that I am indeed a good parent dealing with a bad illness, not a bad child. What a relief!!!!"

"Oh my gosh, this book is great. I feel so much better knowing that my son isn’t alone and neither am I."

"I knew after reading this book that my son was suffering and not just a ‘bad child.’ It gave me hope."

"Please, please believe that childhood BP exists. BP starts at a VERY early age. It is very real and treatable. Find a good pdoc and partner with him/her to help your child."

But some clinician reviewers raised the red flag about a "fad diagnosis":

"Few books scare me more the ‘The Bipolar Child,’" read one Amazon review. "It frightens me that this book is actually influencing parents and physicians into medicating young children …"

According to another:

"Beware of people specializing in a particular diagnosis. They will see it everywhere."

And yet another:

"I see a significant number of children diagnosed with bipolar disorder for psychiatric re-evaluation. Many parents of these children quote ‘The Bipolar Child’ and request I give their child a diagnosis of bipolar disorder. When re-evaluated, the vast majority of these children are not found to suffer from bipolar disorder … To date there is no proof children diagnosed with bipolar disorder grow up to be bipolar adults."

Unresolved Issues

Years later, we are able to agree on only one or two things, namely that early-onset bipolar is hardly a fad diagnosis, and that clinicians must be open to the possibility of the illness in evaluating so-called "problem" children. Thanks to "The Bipolar Child," parents have a much better chance of obtaining proper care for their kids, whether these kids ultimately turn out to have bipolar or not.

Nevertheless, the concerns of the skeptics remain valid. Despite the fact that there is now far more in the way of published studies and clinical awareness, psychiatry is still operating largely in the dark. Diagnostic consensus on early-onset bipolar is yet to be established, and we are years away from ascertaining whether so-called bipolar children grow into classic bipolar adults. An editorial by S Nassir Ghaemi MD of Emory University and Andres Martin MD of Yale in the Feb 2007 American Journal of Psychiatry sets the scene:

"Some clinicians avoid labeling affectively labile youngsters with bipolar disorder, preferring instead less stigmatizing categories like depression, ADHD, or the ubiquitous yet vacillating ‘mood disorder not otherwise specified.’ Others diagnose prepubertal bipolarity rather liberally, often based solely on the presence of irritability, mood swings, and aggression."

The authors of the editorial distinguish between what they define as "narrow phenotype" and "broad phenotype." In the former, the diagnosis is restricted to cases that more closely resemble the adult version of bipolar. In the latter, "perhaps irritability and nonspecific mood lability would suffice."

The authors note that the jury is still out, but advise that "the Hippocratic tradition of caution in the face of uncertainty, combined with the modern emphasis on diagnosis, may be the wisest course to take."

This begs the obvious question that David Healy MD of Cardiff University took upon himself to address. In an essay in the April 11, 2006 PLoS Medicine, Dr Healy observed that "drugs such as Zyprexa and Risperdal are now being used for preschoolers in America with little questioning of this development."

Dr Healy cited the example of a mother, who, after reading "The Bipolar Child," succeeded in convincing her physician to diagnose her two-year-old daughter with bipolar.

Before you recoil in horror, ask yourself if we should refuse to treat a two-year-old who has been diagnosed with cancer, either. True, a lot of controversy exists over labeling kids with an illness we know very little about with meds that have not been sufficiently tested on kids, but before one renders judgment it pays to have several long conversations with the parents of children diagnosed with bipolar. Thanks to meds used for treating bipolar adults, many of these moms and dads will tell you that their kids are now being invited to birthday parties for the first time and no longer being sent to the principal’s office. They will be first to tell you that the meds are no magic bullets and that every day remains a challenge, but they are also daring to hope that their kids have a shot at rewarding and productive lives. Significantly, a look at Amazon reveals that not a single bad review there comes from anyone who identifies him or herself as a mom or dad. Appropriately, in this segment, the last word goes to a parent:

"The first time I read this book after my 8-year-old son was finally diagnosed properly four years ago, I cried with relief that FINALLY what our family had been living with was right there in black and white … It brings peace to your chaos ... it helps give you control over this crazy situation. As we say in the Bipolar Parents support group, ‘RUN, don't walk - buy this book NOW!’"

Working Toward a Diagnostic Consensus

By early-onset bipolar, we are talking about an illness that first manifests in childhood and even very early childhood rather than the usual late teens or early adulthood. We have yet to determine whether the illness is simply adult bipolar that turned up early, or is to adult bipolar what juvenile diabetes is to adult diabetes, or even whether what is happening to these kids can truly be called bipolar.

What we do have is a clearly observable phenomenon that superficially resembles ADHD, conduct disorder, personality disorder, and mood disorder, with clear signs of a nightmarish inner life and large helpings of anxiety, extreme anger, and sleep disturbances, plus no end of behaviors that drive parents to the brink and literally hold entire families hostage. Various symptoms mentioned in isolation such as "giddiness" lend the false impression that psychiatry is over-reacting to what is normal childhood behavior. But something far more serious is going on – just ask any parent who has had to hide all the kitchen knives.

An example from the third edition of The Bipolar Child:

"One day, after [mother] Melissa refused to buy him candy, Eric [kindergarten age] ran out of the grocery store and attempted to run across the street. A few times he attacked her – hitting, kicking, and biting. Once, when sent to his room for a time-out, he opened the second-story window, knocked out the screen, and threatened to jump. Later he told his mother he thought he could fly."

Drs Papolos, Biederman, Wozniak, Geller, and others all have slightly different takes on what they have been observing, but they all seem to agree on the following:

Extreme rapid cycling, days on end - These kids can go from king of the world to denizen of the underworld and back again in a matter of hours. This feature alone would exclude practically every kid from a DSM bipolar diagnosis, which requires manic episodes to last for at least a week.
Severity of the manias – This is no mere child moodiness or prepubescent emotional volatility. Bipolar kids are far worse off than bipolar adults, no question about it.
Reckless behavior, grandiose, won’t accept no for an answer, disturbed sleep, raging tantrums hours on end, extreme separation anxiety, circadian rhythms run amok, gross distortions in perceptions to reality, precociousness in certain functions. These and other features tend to distinguish child bipolar from ADHD, or that symptoms of conduct disorder and personality disorder may clear up when the child is treated for mania. Nevertheless, co-occurring ills are par for the course.
Responsiveness/lack of responsiveness to meds – Treating a bipolar child for depression or ADHD may make him or her worse. A mood stabilizer or antipsychotic, though often far from perfect, may mean your kid gets to have a childhood.
Family history of bipolar – Can be the diagnostic tie-breaker.

The Third Edition

The third edition of "The Bipolar Child" was published in August 2006, and is essentially a new book. Part of this is a reflection of what we have learned since the publication of the first edition, but a major reason is that both authors have whole-heartedly thrown themselves into research, advocacy, and education.

Soon after the publication of the first edition, Dr Papolos and Janice established the Juvenile Research Bipolar Foundation (JBRF), "solely dedicated to the support of research for the study of early-onset bipolar disorder." Major projects, all inter-related and involving a consortium of researchers from various universities, include establishing a large cohort for genetic studies, publishing a child bipolar screening test, and developing an expert consensus on diagnostic criteria. This research is now finding its way into published studies, and clearly informs a lot of the new material in the third edition.

But the true experts are the parents. As with the first edition, Dr Papolos and Janice amply illustrate why the ability to listen is often the best research tool.

More on Diagnosis

The book elaborates on a "core phenotype" that the JBRF has been working on. As well as the usual mood symptoms, a cardinal feature of early-onset bipolar would include poor modulation of drives (such as impulsive behavior), plus a checklist of disturbances that may involve excessive anger, poor self-esteem regulation, sleep/wake cycle disturbances, anxiety, trouble habituating to sensory stimuli, executive function deficits (such as trouble adjusting to a change in plans), emotional inflexibility (such as overreacting to small events), inflexibility to motor activity (from difficulty getting out of bed to bad handwriting), and a family history of a recurrent mood disorder.

The Order Behind the Chaos

Two chapters in particular provide an insight into the sound and the fury. "The Psychological Dimensions" lays it on the line:

"Many children who have bipolar disorder are highly excitable, have problems integrating sensory experience, and clearly have difficulties regulating their level of mental and physical arousal. They have difficulty getting to sleep at night, experience and unusual degree of motor restlessness, and have rapid and prolonged periods of emotional excitability as well as high rates of anxiety symptoms. Frequent bouts of anxiety can be abruptly triggered by any number of stimuli or demands."

For far too long, parents have been blamed for their children’s illness. The chapter, "What Causes This Condition," fingers more likely suspects such as the startle response and an over-sensitive amygdala (which governs fear). For good measure, there’s the HPA axis, the hippocampus, and other emotional circuitry. "Suprachiamatic Nucleus – The Master Clock" reads one tantalizing subheading. Don't be intimidated - this chapter is a terrific beach read.

Daring to Hope

Considerable space is devoted to guiding parents through a health-insurance-educational maze that seems specifically designed to fail their child. No stone here is left unturned, from choosing a psychiatrist to what to expect when having your child undergo neuropsychological testing to dealing with bureaucrats to smoothing the way with your child’s teachers.

But mostly this book is a tribute to the parents and their kids. Fittingly, the last two paragraphs to "The Bipolar Child" serve as the final word here:

"We hope the day comes soon when these children can run and play and swing on swings that have nothing to do with shifts in moods. When parents can rejoice in the great creativity this illness can confer but can watch a child grow with stability, reaching toward a future that is bright, filled more with sunlight than threatening clouds.

"This will happen only if all – researchers, doctors, parents, educators, drug companies, journalists, and policy makers – get involved and make these children’s future a national public health priority. We need to reach, so they can reach. We need to reach, so they can soar."

May 9, 2007, reviewed Feb 15, 2008