DSM, Drugs and Labeling the "Troubled Child"

In this past week's New England Journal of Medicine there is an article with the captivating title Pediatric Mental Health Care Dysfunction. Gabrielle Carlson and her colleagues address the controversy over the new DSM V diagnosis Temper Dysregulation Disorder with dysphoria(TDD). They write: "No existing DSM diagnosis conveys the appropriate severity and complexity of these children's moods and behaviors: the "bipolar disorder" label was meant to provide a home for children who were "diagnostically homeless."

But why, I wonder, do young children need to have any label at all? What is the purpose of such a label? Dan Carlat in his new book Unhinged: The Trouble with Psychiatry has a wonderful chapter about the history of DSM, source of these labels, offering a balanced portrayal of the benefits and limitations of this so called "Bible of Psychiatry."

He writes, "DSM assigns each slice of craziness with a name and a number." When parents are struggling with a troubled child, there may be great comfort in having an answer. They may also have the idea that a label points to the correct treatment. But there are serious downsides to this approach.

Since the mid-1990's when a "small but influential group of child psychiatrists" proposed to label children with severe mood dysregulation as "bipolar" the number of children receiving this diagnosis increased 40 fold. Carlson writes: "These children, some preschoolers, were primarily treated with mood stabilizers and a new generation of antipsychotic drugs. But, as Carlson acknowledges in her article, the evidence for efficacy of the medications used to treat bipolar disorder in childhood, medications with very serious side effects, is "sparse at best." The argument that labelling leads to appropriate treatment falls flat.

Moreover, she offers the alarming research finding that "a recent study of large data bases of privately insured individuals showed that most young children prescribed antipsychotic medications did not receive adjunctive psychosocial treatment."

This past March I had an oped in the Boston Globe addressing the TDD diagnosis entitled Warning Label on a new Diagnosis. I describe what a child with severe explosive behavior looks like, and what "psychosocial treatment" might involve.

I saw 5-year-old Alex with his parents in my pediatric practice (details have been changed to protect privacy) for “explosive behavior and irritability.’’

One morning Alex’s father, Ben, called to Alex upstairs and asked if his younger sister could have some of his pancakes. There was a misunderstanding; Ben thought he said “yes’’ but Alex insisted he had said “maybe.’’ Alex came into the kitchen and found his sister eating his pancakes. He immediately began to scream, and threw her plate on the floor.

He hit his mother, Carla, who, overwhelmed with rage herself, grabbed him and carried him up the stairs to his room. There he attempted to kick the door down. After about 45 minutes, both Alex and Carla collapsed in tears of exhaustion and frustration. This type of scene occurred in their home several times a day.

I met with Ben and Carla alone, and they described Alex as a challenging baby from the start. Carla cried as she spoke of her own abusive father and her difficulty managing her anger. She decided to address these issues in her own therapy. Ben told of stresses in their marriage that they felt had resulted from having such a difficult child. Over time, as these issues were brought to light, Ben and Carla felt better equipped to help Alex contain and manage his frustration. Though the problems are far from resolved, a more positive pattern of interaction was set in place, and Alex’s development is on a healthier track.

In Carlat's discussion of DSM he writes, "The tradition of psychological curiosity has been dying a gradual death, and the DSM is part cause, part consequence of this transformation of our profession. These days psychiatrists are less interested in "why" and more interested in "what."

When young children are labeled with any diagnosis, the "why" is often not explored. Yet it is the "why" that offers the path to effective treatment. As I wrote in my op ed:

I hope that this new diagnosis will open up discussion about the meaning of these children’s behavior. Use of the word “dysregulation’’ is an important first step. Extensive research at the interface of developmental psychology and neuroscience has demonstrated that young children learn to regulate emotions in the setting of relationships with their caregivers.

A child may be born with a genetic vulnerability for emotional dysregulation. Responsive parenting, however, may alter the actual expression of these genes, and even change the chemistry and structure of the brain.

Emotional “dysregulation’’ is an accurate description of Alex’s behavior. DSM-V is primarily a descriptive document that does not address cause. However, if clinicians treating this new disorder think about emotional regulation as a quality that is learned in relationships, it may open up a path to considering meaningful alternative interventions.

Use of psychiatric drugs and not answering the "why" are two significant downsides to labelling to young children with a psychiatric disorder. I propose a third downside, in my opinion perhaps the most compelling reason not to label a young child.

In my blog, I have been writing about the ideas of D.W.Winnicott, pediatrician turned psychoanalyst. Another brilliant contribution was his notion of the "true self." A complex idea beyond the scope of a blog post, I will simplify it by saying that a child develops a healthy sense of self when the people who care for him recognize the meaning of his behavior, rather than substituting their own adult meaning. Parent's who receive a diagnostic label for their child inevitably go through a period of mourning. The child they had is gone and replaced by the child with a "disorder." For a very young child whose development is unfolding, his "true self" might be lost. Given that we know so little about either the diagnosis of bipolar disorder or the new temper dysregulation disorder, I would argue that the comfort of a label is never a valid reason to risk such a loss.

The "Transitional Space" and its Relevance to Pediatrics

When parents come to see me in my pediatric practice for a child's behavior problem and I begin to explore the parent's own life experiences, he or she may say in a resigned tone, "then its all my problem!"

D.W.Winnicott, pediatrician turned psychoanalyst and one of the main guiding influences on my work, is perhaps best known for his description of the "transitional object." A related idea, less well known, is of the transitional space. I have found this idea to be very helpful in locating where the "problem" is in response to such a reaction.

When my daughter was five months old, we bought her two soft puffalumps with a bell inside.(I knew to follow the advice I had been giving parents for years- get two so you can wash one) She and the toy, which, when she began to talk, she named "mousy," almost immediately became inseparable. When, at about age 2, she fell at the playground, she immediately cried out, "MOUSY!! Now 15 years old, the worn and tattered mousies sit on my daughter's bed and receive almost no attention, though I suspect she will take them to college.

Winnicott referred to the transitional object at the first "Not-Me possession." As a baby begins to become a separate person, but does not yet have the capacity to regulate himself in the face of difficult feelings, such as occur when separating at bedtime, he or she makes use of this highly valued object.

The "transitional object" is the physical form of the transitional space between a child and his parent. In this space a baby begins, with appropriate encouragement from his parent, to grow into a separate person.

So how is idea of the "transitional space" helpful in evaluating and treating "behavior problems?" Consider 18 month old Kevin, whose mother, Amy, brought him to see me because "he hits too much." The three of us sat on the floor. Kevin played while we spoke. When he became restless and threw a toy at his mother, she had a vivid memory of having been slapped across the face by her father as a child. She realized that she would retreat emotionally when Kevin hit her, even physically leaving the room when it happened at home. The "problem" was neither in Kevin nor in Amy but in the transitional space between them. His experience as a healthy toddler with normal aggressive feelings met her experience of trauma.

Kevin was certainly contributing his share to the problem. The hitting was getting worse, perhaps beyond the level of what might be considered "normal". He had a very persistent temperament and was repeatedly testing Amy, likely looking for help managing his feelings rather than the emotional abandonment he was experiencing.

By sitting on the floor as a threesome, we were able to be in this transitional space, which is easier to see when there are three people. Only then could we gain a true understanding of what was wrong and begin to know how to solve the problem. Addressing either Kevin's behavior alone, or Amy's history alone, would not offer this opportunity. Certainly giving advice about how to do a "time out" would have missed the point. Amy was an intelligent woman and had access to the myriad of parenting books and articles that explain how to set effective limits. Only when she was able to understand the meaning of his behavior, both for him and for her, was she able to respond appropriately. She knew what to do.

So when I listen to the story of a "difficult" child I think of the problem as being neither in the child nor in the parent. The location of the problem is in the relationship. We can come to understand it by being in the transitional space between these two very close yet separate people.

New Paradigm Needed for Primary Care

A recent blog post of mine, in which I describe a visit with a family whose toddler was not sleeping, was reposted on another blog, kevinmd.com (which offers an excellent collection of articles related to health care). It received the following comment:

How exactly does a general pediatrician bill for a “full 50-minute visit” to discuss toddler sleep problems. No insurance company would pay for it anyway. Most private practice pediatricians would be out of business with this sort o advice. This doesn’t seem very realistic for the general pediatrician

Another wrote that, "This is exactly the kind of visit that can be delivered with a cash-only practice."

This is absolutely not true. I have been taking care of children in this way for many years in the setting of a busy small town pediatric practice. All insurance companies reimburse for a 50 minute visit for a behavior concern. I use standard pediatric billing codes. As I am the identified "behavioral pediatrician" in the practice I devote several hours a week to these longer visits. For many years I did this in addition to the full range of pediatric care, including check-ups, ear infections, sick asthmatics, etc. About 4 years ago I stopped doing primary care, not because this model of care did not work, but only because the needs of my 2 school age children made taking call very difficult.

This rather angry fatalistic attitude of these two readers brought to mind a terrific article from last week's New York Times entitled Delivering Better Primary Care It addresses the impending onslaught of 40 million new patients into a primary care system that is already overburdened and undervalued. Much of the article is devoted to an interview with Dr.Richard J. Baron, who has written extensively on the subject and has developed an innovative model of care for patients with chronic illness. I quote here in its entirety the end of the interview.

Q. What are the lessons from your experience?

A. I think that we primary care practitioners need to think about redesigning our practices not so much around the payment system but around what we think are the opportunities to add value to our patients. It’s going to be a different kind of primary care in the future. If we free ourselves to ask what we can do to make a difference for patients, I think we will find ourselves full of ideas.

The policy people on the other hand have to figure out how to encourage people to unlock themselves and give better value in primary care. They cannot expect that to happen in a system that so punishes people who are trying to do this.

People do not make the best doctors or policy people or advocates from a position of anger. We have to think more about what we all want and how we can move toward that.

I wholeheartedly agree with Dr. Baron. I have written at length in my blog and elsewhere about the wealth of research demonstrating how supporting early relationships will promote children's healthy emotional development. It is imperative that we find a way to apply these ideas on a large scale in the primary care setting. This will involve some significant changes, in the medical education system, in the way primary care is reimbursed and in the value placed on listening. But simply saying that it won't work is not an option.