Painting the True Picture of Pediatric Bipolar Disorder-Megan Aleardi

Over a decade ago, documentation in scholarly journals and published statements from the National Institute of Mental Health (NIMH), acknowledged that Pediatric Bipolar Disorder (BPD) was a controversial area of mental health that had been neglected for a considerable amount of time. A review of the publications up to that point concluded that more studies of treatment, course and outcome on Pediatric BPD were urgently needed (1). In 2001, the NIMH held a meeting in the form of a roundtable discussion comprised of 19 of the top researchers and clinicians in the field of Child Psychiatry who were invited because they all agreed that the diagnosis of Pediatric BPD was equivocal and should be further defined. While smaller details about how cycling and/or irritability played a role in the distinction between which category of pediatric bipolar disorder a child would be classified, the larger agenda was successful in that all participants concluded the disorder did indeed exist and could be diagnosed in pre-pubertal children (2).

A Federal Award which would provide funding for the implementation of an annual conference for the following five years was granted to one of the roundtable participants. The goal of the funding, similar to that of the roundtable meeting, was to get their agenda regarding Pediatric BPD on the map. This was to be done by gathering clinicians of all kinds, parents of children with BPD, and representatives from advocacy groups together to set the final agenda; that being the dissociation of the stigma with, and eventual acceptance of, the diagnosis of Pediatric BPD to the public.

Why the Disconnect?

Child Psychiatry has been ineffective as a unified field in its ability to properly develop and disseminate their agenda to the public. The particularities of the phenotype on which researchers do not agree have prohibited the agenda from being fully developed. This shift in agenda has effectively left an opening for the media to misrepresent the diagnosis by framing the disorder as one that does not exist. The stigma associated with the diagnosis of Pediatric BPD not only effects the ability of the parents to accept the label, but it also prevents practicing clinicians from having the confidence to properly diagnose and treat the disorder.

Agenda Setting Gone Wrong.

In her book, “Team of Rivals”, Doris Kearns Goodwin spoke of the strength of Abraham Lincoln‘s political career as one in which he had the sense of the large picture, the sense of timing, and the patience to endure internal or public scrutiny until what it was he was trying to accomplished was ready, complete, and the timing was right for him to announce it to the world (3). Lincoln’s campaign for presidency is an example of the “Agenda Setting Theory” carried out successfully.

Unfortunately, Child Psychiatry as a field has yet to be successful in properly following the Agenda Setting Model. At this time, the field should be presenting itself as one united team with the agenda of dissociating any stigma that is associated with what they study with intense passion and all agree upon. The shift to individual sub-agendas occurred because of the field’s hyper focus on the phenotype. Teams of psychiatrists are putting the energy into proving that their definitions of terms like “rapid cycling,” “multiple episodes per year, “daily cycling” are the pinnacle points in defining Pediatric BPD. Contradicting theories stating that the diagnosis is based upon grandiosity and euphoria, or that irritability, distinguished by severity, is a cardinal rule in defining the disorder, are breaking down the large agenda (4-6).

Furthermore, the field has been unable to come to a conclusion as to which mechanism is the most appropriate, or most accurate in making the official diagnosis of Pediatric BPD. Studies on The Child Behavior Checklist (CBCL) and on the Convergence between structured diagnostic interviews and clinical assessments (7-8), while essential to the field, would be better received as part of the full agenda package. Making the distinctions between the different levels, variability, and outcomes in addition to figuring out the best way to make those distinctions is of utmost importance. However, until a majority of the field has come to a consensus, and until those who may not agree with the majority stop publically opposing others, the media is left to thrive on the controversy within the small details of the field, rather than portraying what the top researchers can agree on; that is, Pediatric BPD is a serious and morbid disorder.

The Media Framed Its Own Picture.

The shift from the initial agenda of disseminating the validity of the diagnosis of Pediatric BPD to the public, to the sub-agendas of individual groups trying to prove his/her methods to be superior to others, effectively left a wide opening for the media to misrepresent the diagnosis by framing the disorder as one that does not exist. They were able to do this through the portrayal of some of the leading researchers as bad doctors by misquoting what had been said and using quotes out of context. The Media’s portrayal of Dr. Joseph Biederman, the clinician who took the initiative, applied for, and received the funding to carry out the agenda as established at the initial round-table discussion is an example of how it contributed to the break down of the field’s agenda. He, like Lincoln, invited those researchers that may not have had the same views as he did to help finish what had been started at the previous meeting. He also invited representatives from parent advocacy groups such as the Child and Adolescent Bipolar Foundation (CABF), as well as actual parents who were living with a child suffering from BPD. Providing a forum to present new information from research, as well as gather opinions from those who lived with the disorder and those who advocated for them was a right step towards getting on the agenda. Unfortunately, the shift of all members of the conference to their own agendas, combined with the overdose death of a 4-year old child diagnosed with Pediatric Bipolar Disorder, left the media with room to paint their own picture. The media found the perfect opportunity to frame Pediatric BPD as a non-existent disorder that was created by the researchers and pharmaceutical companies to make money (9). By disrespectfully using the tragic death of a child to blame some of the leading researchers in the field, the media significantly slowed down any forward progress towards the original agenda of Child Psychiatry. The stigma is not only stronger, but also more associated to Pediatric BPD.

On June 17, 2007 a member of staff on the Boston Globe opened his article with the following statement: “No one has done more to convince Americans that even small children can suffer the dangerous mood swings of bipolar disorder than Dr. Joseph Biederman of Massachusetts General Hospital. From his perch as one of the world's most influential child psychiatrists, Biederman has spread far and wide his conviction that the emotional roller coaster of bipolar disorder can start "from the moment the child opened his eyes" at birth…” (10).

On June 19, 2007, Lawrence Diller wrote the following to open an editorial in the Boston Globe, “As a doctor, I did the nearly unthinkable at a recent conference on bipolar disorder in children. I charged another doctor with moral responsibility in the death last December of Rebecca Riley, a 4 -year-old girl from Hull. Naming names in medicine is just not done very often -- and I knew the personal and professional risks I was taking. Yet I felt compelled to name Joseph Biederman, head of the Massachusetts General Hospital's Pediatric Psychopharmacology clinic, as morally culpable in providing the "science" that allowed Rebecca to die... (11)”. For the record, Dr. Biederman was not ever associated with Rebecca Riley’s case, or those who had been treating her.

The blogs became filled with the majority of comments from those who accepted the media’s portrayal of the disorder and from those who were denouncing the field. Few and far between though, were posts from parents who wanted to share their success stories to show support of those clinicians who had overcome the stigma and were not afraid to diagnose and treat children. Based on the number of negative comments, it was clear that the initial agenda to dissociate the stigma was not as compelling as the way the media re-framed it. Dr. Jerrold Rosenbaum, The Chief Psychiatry at MGH published a statement in defense on the attacks on Dr. Biederman. On June 27, 2007, he said it best when he wrote, “Despite the imbalanced and sensational media coverage, and despite the attempts of misguided critics, Biederman and others must -- and will -- persevere in this field because it is the right thing to do. No, it is not Biederman who suffers most from the preposterous allegations set forth. Sadly, the greatest losers are children with mental illness and families, who, as a result of the proliferation of misinformation and the deepening of a stigma, could feel too embarrassed and ashamed to seek the life-saving help they so desperately need (12).”

The Stigma Still Exists.

The unfortunate outcome of the “Agenda Setting Theory” gone wrong in addition to the media’s ability to incorrectly re-frame the disorder, has left the current state of belief amongst the general public associating a major stigma with Pediatric Bipolar Disorder. The public generally has not accepted the diagnosis as a real disorder nor one that needs to be treated. This stigma is still in the minds of the practicing clinicians, leaving many afraid to make the diagnosis for fear of a media attack on him/her. The fact that the stigma exists at the level of the doctors doesn’t bode well for those that count on them for explanations. The parents cannot overcome the stigma if the doctor who is treating (or not treating) their child has not overcome it. We are left then, with children who are suffering, and people who want to help but are afraid to label a child as having BPD. The problem that lies beneath the label is that without a diagnosis, our children won’t receive correct treatment. If left untreated, we are doing a major disservice to these children as we are not controlling the disease and we are not preventing what can escalate into larger issues.

The proper treatment of the disorder is not anywhere near being accepted due to social stigma placed upon the medications associated with it. What people are missing is that if treated, a child is less likely to engage in risky behavior such as smoking which is a gateway to additional drug forming habits which in turn become substance use disorders (13-14). “Between 40% and 70% of people with bipolar disorder have a history of substance use disorder. A current or past comorbid substance use disorder may lead to worse outcomes for bipolar disorder, including more symptoms, more suicide attempts, longer episodes, and lower quality of life (15)”.

The parents are left to question the truth if the confidence of the doctor in making the diagnosis is lacking. The stigma prevents them from finding supportive resources to help them to accept the truth and learn what they can do to manage and maintain the quality of life their child deserves. Parents don’t want to be labeled as bad parents, nor do they want their children being labeled as bad kids (16). If a parent cannot overcome the stigma associated with something that they live with every day, the child will not have the support to overcome it either.

Implications and Conclusions

Dr. Janet Wozniak summed it up when she stated that, “Although the diagnosis of Pediatric-onset bipolar disorder is controversial, an increasing literature of systematic research has challenged the traditional view that this disorder is a rare condition” (17). Unfortunately, that “traditional view” is still quite common, even 7 years after that statement was made. The stigma is still present, and the media’s use of framing it as a disorder that doest not exist is preventing any progress towards the dissociation of the stigma and ultimate acceptance of Pediatric BPD. An article recently published in the Harvard Medical Letter restated what we knew many years ago when it said, “it’s important to understand that despite uncertainties surrounding the diagnosis childhood bipolar disorder is a real and serious illness that should be recognized and treated as early as possible (18).” The irony to this statement is that the author chose to remain anonymous. That irony summarizes the exact problem that Child Psychiatrists’ face in getting the public to accept the disorder. The general public will believe what information they obtain from the media as they can associate an actual person with what they are being told. The initial agenda of child psychiatry needs to be set and backed-up by the experts as the first step in the circulation of the truth. Until then, many children will live their lives with an untreated and tremendously morbid disorder with detrimental outcomes.

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