Value Primary Care Clinicians, Not Psychiatric Drugs for Children

As I sat down to write this blog post, I was torn between two stories. One, in yesterday's Boston Globe Harvard Doctors Punished Over Pay, refers to the child psychiatrists who advocate for atypical antipsychotics for children and who received, but did not report, large sums of money from the drug companies that make these medications. The article stated:

Concluding a three-year investigation, Massachusetts General Hospital and Harvard Medical School sanctioned renowned child psychiatrist Dr. Joseph Biederman and two colleagues after finding they violated conflict of interest rule.

The other was last weeks pair of stories about the government's plan to essentially spy on primary care clinicians. The original New York Times article U.S. Plans Stealth Survey on Access to Doctors stated

Alarmed by a shortage of primary care doctors, Obama administration officials are recruiting a team of “mystery shoppers” to pose as patients, call doctors’ offices and request appointments to see how difficult it is for people to get care when they need it.

Two days later, the Times ran another story entitled Administration Halts Survey of Making Doctors Visits describing how the Obama administration had "shelved plans" for the survey.

I decided to address them both, as I see them as linked. They both speak to the value this country places on individuals listening to and understanding each other.

Prescribing powerful mind-altering drugs to preschoolers with emotional and behavioral problems is the antithesis of listening, both to children and to parents. As I have observed frequently both on this blog and in my forthcoming book, Keeping Your Child in Mind

Being understood by a person we love is one of our most powerful yearnings, for adults and children alike. The need for understanding is part of what makes us human. When our feelings are validated, we know that we’re not alone. For a young child, this understanding helps develop his mind and sense of himself. When the people who care for him can reflect back his experience, he learns to recognize and manage his emotions, think more clearly, and adapt to his complex social world

Yet the combined forces of the health insurance industry and pharmaceutical industry have led to a situation in which listening to desperate parents who are struggling with their troubled children often is translated into prescribing a drug (one with very serious side effects) to control their behavior. A March 2009 Times article Drug Makers Told Studies Would Aid It, Papers Say refers to the same psychiatrist now found two years later to have violated conflict of interest rules.

The psychiatrist, Dr. Joseph Biederman, outlined plans to test Johnson & Johnson’s drugs in presentations to company executives. One slide referred to a proposed trial in preschool children of risperidone, an antipsychotic drug made by the drug company. The trial, the slide stated, “will support the safety and effectiveness of risperidone in this age group."

Primary care clinicians, in conjunction with mental health clinicians, have the opportunity in relationships with families over time, to support parents efforts to promote their children's healthy emotional development. Parents themselves need to be heard and understood. They may be struggling with financial stress, a strained marriage or single parenthood, conflicted relationships with their own parents as well as a temperamentally challenging and inflexible child. In my book I place these two paradigms, effective listening, and prescribing psychiatric drugs, side by side.

Those who advocate use of medication in young children with a range of behavior problems argue that stress hurts the brain and that these medications can protect the brain from this stress. When children and parents feel out of control, when there is sleep deprivation and explosive behavior, both parents and children experience a great deal of stress. It is not surprising that giving a powerful drug that acts on the brain would calm a child down.

But medication is not the only way to reduce stress. As I describe in chapter two, being understood by people who love you also reduces stress at the level of brain biochemistry. Reducing stress and changing the brain in this way is hard work. It requires sustained effort and a lot of support for parents. But the changes are safe and may last a lifetime.

Much as I am an ardent supporter of President Obama, the proposed, "spying" on primary care clinicians to evaluate the primary care shortage has me concerned that he doesn't fully understand what good primary care clinicians do.

Effective listening is very hard work. A good primary care clinician values and nurtures relationships with families over time. She holds the health and well being of the family, supporting and guiding them through the myriad of challenges both emotional and physical that come their way. She spends hours on the phone, both with insurance companies, advocating for coverage for procedures and medications that require"prior authorization," as well as with patients and their worried family members.

I know that President Obama values, and is a master of, this kind of effective listening. I hope that he applies these listening skills to the primary care clinicians, and listen to their stories. Perhaps then the administration will come up with a policy to address the shortage of primary care clinicians (sure to worsen as millions join the ranks of the insured) that, unlike the spying plan, makes sense.

Teaching Your Teenager To Drive: How Contemporary Developmental Theory Can Help

Can I practice what I preach? I was asking myself just that question when last week, my 16-year-old daughter decided that a trip to the mall was the time for her to learn how to drive on the Turnpike. She's had her permit for about two months, and so far I've found the experience of driving with her to be much less stressful than I anticipated(she did take Drivers Ed through school, which was a big help in taking the learning out of the realm of the mother-daughter relationship!)

My forthcoming book "Keeping Your Child in Mind," is organized around one idea, an idea that comes out of contemporary developmental research at the interface of psychology and neuroscience. In a nutshell, by understanding your child's behavior, empathizing with her experience, managing difficult feelings by containing them and setting appropriate limits, all while managing your own distress, you will help facilitate her healthy emotional development. The question I asked myself that morning was, can I do this while hurling past trucks at 70 miles per hour on a busy turnpike?

Most of my book is based on stories from my pediatrics practice, but some of the stories in the book are drawn from my experience as a mother. Now that the book is done, this was a chance to see what it would be like to use the ideas in the book in a moment potentially fraught with multiple levels of difficulty.

Number one, understanding her behavior. She is capable of doing this and feels confident in her abilities. Intellectually I understand that, even though I still see her as my baby, for child of her age it is developmentally appropriate to drive on a major highway. Number two, empathize with her feelings. I think of one of my favorite phrases that I learned from a social worker many years ago; "Face your fears and watch them disappear." My daugher is probably terrified, but she knows that she needs to just do it. Third, set appropriate limits. In this context, I need to calmly yet firmly tell her that she cannot drive at 65 in the left lane. As soon as she can safely do so, she must shift back into the right lane. No discussion, no negotiating this point. And last, I must master my own distress, so that I can be fully present with my daughter and help her to manage this challenging experience. I must tuck away that fleeting thought when I said good-bye to my son in the morning that he might never see me again. I must set aside the fears that I can't even bring myself to write in this post. She successfully navigates not only passing these huge trucks and shifting back into the right lane, but exiting from the turnpike and entering the Interstate for a short distance. " You need to slow down," I say as calmly as I can a manage when, towards the end of the hour-long trip, she attempts to negotiate the exit at 40 miles per hour.

At last, she pulls into a spot in the mall parking lot. "Thank you for helping me." she says. "And for staying calm." I tell l her that
I'm glad we did it together. I would much rather she learn the nuances of turnpike driving from me than have to figure it out on her own when she gets her license.

During the trip I actually held the image of the cover of my book in my mind while taking deep breaths and working to stay calm. Certainly there have been many moments when I have lost my cool with my children. But for this critical developmental milestone, the idea of holding my child in mind really came through. I go into the mall and buy myself a new pair of shoes. I deserve it. This is hard work!

Storytelling As Treatment for Common Childhood "Behavior Problems": A Clinical Example

I am most grateful to my patients, who are often my best teachers. I am moved to write about them, to spread the knowledge they have given me to a larger audience. Of course confidentiality is my top priority, so I aim to protect my patients' privacy while staying true to their story. This past week in the KevinMD newsletter, there was a piece about the new discipline of narrative medicine, which looks to literature and the power of stories to enhance the practice of medicine. The following encounter, from my behavioral pediatrics practice, is a perfect example of the power of storytelling.

Eighteen-month-old Joe was drinking up to 5 six ounce bottles a day. "He won't eat anything else, but when I say no to the bottle, he screams. It's just easier to give in." Joe's mother, Sandra, had been advised at multiple visits to the pediatrician that she needed to stop. He was at risk for nutritional problems including iron deficiency anemia, and his teeth were being damaged when he fell asleep with the bottle in his mouth. Yet despite having this information, Sandra was unable to set limits with Joe. Her pediatrician referred her to me.

I met with Joe and his mother for one 50 minute visit. We sat on the floor and talked while Joe played. He was a delightful boy who was very curious and quickly got absorbed with the selection of toys. He looked healthy and robust. His mother started the visit telling me that she knew she just needed to get rid of the bottles, but that she couldn't bring herself to do it. Rather than focus on what to do, I asked her to tell me about her pregnancy and Joe's infancy. Sandra was from Ecuador, and she had met her American husband when she came to the US as a student. They had gotten pregnant much sooner than they planned. Sandra's mother was unable to get a visa and had never met Joe. I asked Sandra what it was like to have a new baby without her mother nearby. "It's terrible," she said. Her husband worked long hours and she had only recently begun to make friends. She spoke with her mother on skype, but, she said, "for Joe she's not a real person." This made her very sad because her mother so much wanted to be involved as a grandmother. In contrast, her mother-in-law, who lived nearby, did not show much interest in helping her with the baby.

Sandra spoke of great difficulty nursing in the first days, when Joe did not latch on well. "He never would have survived in the wild," Sandra told me. She conveyed sense that both she and Joe had failed in some way. I pointed out that "in the wild" she would never have been alone without extended family.

Sandra began to talk about how things were so different in Ecuador. Parents were in charge of what their kids ate, and there was none of this "offering choices" that so many had advised her to do. In addition, a fat baby was a sign of a healthy baby. Sandra felt that to fail to feed you child was to be a failure as a mother.

Then Sandra remembered that she herself had been a very skinny child. In fact, she recalled her mother telling her stories about when Sandra was an infant and the other mothers would say to her mother, "What's wrong with you that you starve your baby?" Yet Sandra recalled that she was a very busy active child, very much like Joe, who often didn't want to be bothered with eating.

"It sounds like you are having s similar experience with Joe to what your mother experienced with you," I said. Sandra was quiet as she seemed to be thinking this over. "You're right," she said. "Maybe this is more about me than about Joe."

We spoke some more about Joe's behavior around eating and the differences between American and Ecuadorian ideas about raising children. I said that she would have to decide what she wanted to do, but that I thought that if she continued to battle with Joe around eating, this would likely continue to be a problem. My only "advice" was that she consider giving Joe more independence to feed himself. We made a follow up appointment in a few days, when her husband would be able to come.

"I got rid of the bottles," Sandra told me as soon as we were settled on the floor. Joe once again was contentedly playing. "How did he do?" I asked, surprised by this rapid development. "Well he cried at night, but he seems OK during the day." Then she told me that he had eaten some new foods, and was interested in what another child was eating at a play date. "I knew everything we talked about last time. I just didn't want to do it." "What made the difference?" I asked. She claimed that she had realized she needed to protect his teeth.

We talked some more about bedtime and some other parenting issues that they had been struggling with. I asked if she wanted to schedule another appointment. "Well, we solved the problem," she said. She told me that she would call if things did not continue to go well.

In this age of "evidence-based medicine" I wonder how I would design a study to show if telling her story to a supportive non-judgmental person was the reason Sandra was finally able to follow through with what she knew she needed to do. Would one group get standard "advice" while the other had the opportunity to sit on the floor and tell their story? I'm not a researcher, but from what I know about research, designing such study to have statistical significance would be very difficult. All I can say is, "I was there." I am pretty sure that having her story heard was what enabled her to act. I'll leave it to the researchers to prove it.

On "Composing a Life": Women Physicians Who Work Part Time

I admit I was almost stunned into silence by this past Sunday's Op Ed in the New York Times entitled Don't Quit this Day Job. A woman anesthesiologist argued that the current shortage of primary care physicians is due to women who take residency slots and then chose to work part time. She concludes her piece by saying that:

Patients need doctors to take care of them. Medicine shouldn’t be a part-time interest to be set aside if it becomes inconvenient; it deserves to be a life’s work.

I was heartened to read the array of wise letters to the editor written in response. They all identify important issues and I highly recommend reading all of them. One that I particularly admired was from a woman ER physician who wrote;

Dr. Sibert claims that “medicine shouldn’t be a part-time interest to be set aside if it becomes inconvenient.” I would argue that the same holds true for my child.

I was encouraged to formulate my own response.

About ten years ago I read a book Composing a Life by Mary Catherine Bateson, daughter of Margaret Mead. Bateson follows the lives of 7 women, including Joan Erikson, wife of Erik Erikson, who had significant careers that were shaped around their roles as spouse and mother. In the introduction she writes:

This is a book about life as improvisatory art, about the ways we combine familiar and unfamiliar components in response to new situations, following an underlying grammar and an evolving aesthetic.

As my professional life has taken many twists and turns to accommodate the needs of spouse and children, I have found it comforting and inspiring to think of this not as a burden, but rather as creation of a work of art.

As many readers of my blog know, I have just written a book, Keeping Your Child in Mind. My hope is that this book will offer validation and support to a large number of families, more than I could ever reach in my practice. Yet had I not taken these twists and turns to accommodate the needs of my family, this book would never have been written.

I have worked part time since my children were born, and took my first break from primary care to start a parenting center when my second child was born. Then when my children reached school age, my husband and I recognized that to meet the demands of swim practice, play rehearsals, dance performances and all the other things that go along with of having school age children, one of us would have to be more available. My husband is an eye doctor who runs his own practice, so it made sense that I would be the one to change.

Much as I loved doing primary care, the inflexibility and time demands of taking call were not compatible with the way we wanted to raise our children. Reluctantly I gave it up, focusing on building a behavioral pediatrics practice that did not require taking call. It was that experience that led to my writing a column for the Boston Globe entitled Mind-Altering Drugs and the Problem Child. The overwhelmingly positive response, from parents and professionals around the world, in turn led to the writing of the book.

Being a mother is both an awesome privilege and an awesome responsibility. It is in a sense the greatest act of creativity. It makes sense that women who create in this way can also create their own professional lives. By embracing this creativity, both as mothers and as professionals, we can aim to find new and important ways to contribute to society, while at the same time being present in the lives of our children in ways that support the healthy development of the next generation.

Rise in Autism or Simply Autism Diagnosis?

A mother brings her two year old son, Evan, for an evaluation through the Massachusetts Early Intervention Program(EI). She and her husband are at their wits end, fighting constantly over this very challenging child. An older sister is neglected in the face of the intense demands of of her brother. He screams in the face of any transition, cannot tolerate loud noises, eats only a very narrow range of foods. He has frequent meltdowns and is difficult to comfort physically, resisting efforts of his parents to hold him. When he goes to playgroup, he runs around in circles rather than interact with the other children.

A study published in the June issue of Pediatrics, Early Autism Spectrum Disorder Diagnoses in Massachusetts, shows that more young children in Massachusetts are receiving treatment for autism spectrum disorders, with the proportion of those 3 and younger being treated rising by 66% from 2001 to 2005. A summary of the study states "Researchers did not determine whether the increase was because of improved awareness, better diagnosis or an increase in the prevalence of the disorder, but said a combination of factors was likely."

There is yet another reason for the increase in diagnosis, perhaps even the major reason . If the above child is diagnosed with an autism spectrum disorder, he will receive a whole range of services through EI including developmental specialists coming into the home on a regular basis to help the family make sense of and manage Evan's difficulties. On the other hand, if he does not get the diagnosis, this family, which is most certainly struggling, may get ZERO. Nothing. No help at all.

Evan may have some significant biologically based vulnerabilities, with a low frustration tolerance, inflexibility and number of sensory processing difficulties. But if he and his family can get the support they need, he may learn to manage these vulnerabilities. He may even be able to transform them in to an asset, becoming a musician or a professional chef.

Perhaps the rise in diagnosis is not because of a rise in autism, but because of limited access to mental health and community based support services for children like Evan and their families. The health insurance industry and managed care have contributed to this problem through prohibitively complex administrative costs for private practitioners. Many of the best mental health practitioners are therefore not on insurance plans and quality services may be inaccessible to families who most need them. Early Intervention is a superb program that is available to anyone in need. But the catch is that a child usually needs to have a diagnosis to be eligible.

Autism is a highly charged subject. Parents of children who are severely impaired understandably bristle to questions about the legitimacy of the diagnosis. I suspect that what is now called autism represents a very wide range of difficulties that we will come to learn are actually a number of different and distinct problems. While early identification and intervention is essential. I believe there is a need for caution regarding diagnosis.

Parents who receive a label of a major psychiatric diagnosis for their child inevitably go through a period of mourning. The child they had is gone and has been replaced by a child with a “disorder.” As D. W.Winnicott, pediatrician turned psychoanalyst, so wisely observed, 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. Parents often begin to regard behaviors as “symptoms” of the “disorder.” For a very young child whose development is unfolding, his “true self”(again in Winnicott's words) might be lost in the face of such a frightening label.

It is my hope that we can move from an emphasis on diagnosis and labeling to an emphasis on prevention. We need to ask not “what is the disorder?” but rather, “what is the experience of this particular child and family?” and “what can we do to set things in a better direction?” This current situation, where a diagnosis is needed in order to get help, is a dangerous example of the tail wagging the dog.

Why Pediatricians Need to Know About Infant Mental Health

I recently became recertified by the American Board of Pediatrics. My certification was due to expire at the end of this year. In order to accomplish this task I had to do two things. One was to complete an assessment of my knowledge base. The other was to complete an approved "quality improvement activity." I chose one referred to as the "Attention Deficit Hyperactivity Disorder (ADHD) Performance Improvement Module" Clinicians who are currently seeing very few patients(the case for me due to the book writing) are able to use simulated patients for this online activity. By giving data for patients over three time points, this "performance improvement module" scored me in the high range of improvement of care because I gave the Vanderbilt( a standardized assessment tool for ADHD evaluation with a parent and a teacher version that assesses symptoms and academic performance) to every patient, discussed the option of medication, and if they were on medication, measured weight and blood pressure at every visit. That and pay $1,000 and I am now recertified until 2016.

This experience brought to mind a case of a seven-year-old boy who was referred to me for evaluation of ADHD. He arrived with the completed parent and teacher Vanderbilt forms on which he scored in the high range for inattentive and hyperactive ADHD. His mother had a high expectation that I would put him on medication. In our first visit, when I met with the mother alone, the following story emerged (details have, as always, been changed to protect privacy.)

For the first six years of his life this boy lived with his father, who was an actively drinking alcoholic. His mother lived in a different state and was intermittently involved in his life. When his father became ill with advanced liver disease, his mother moved closer to him and began to be more involved in his care. His father continued to drink despite his rapidly declining health, and though his mother was at first reluctant to share details, her son had witnessed his father's rather gruesome death at home about 6 months prior to our visit. He was now living with his mother and was struggling in school. He was receiving no psychotherapy or intervention of any kind. His teachers, who knew little of this story, had recommended the "ADHD evaluation" and had suggested strongly that he might benefit from stimulant medication.

The work of psychiatrist Bruce Perry, who taught one of the weekends of the Infant-Parent Mental Health Post Graduate Certificate program of which I have been writing for the past year, helped me to understand what was likely happening for this boy in school (for the sake of this blog post his work is simplified. For further information see the Child Trauma Academy website.) For most of his life this boy lived with an unreliable caregiver, who, when he was drinking likely was unrecognizable. The same person who he relied on for safety and security was frightening and unpredictable. The subsequent witnessing of his father's death adds a level of trauma that is almost unimaginable.

When children experience this kind of trauma from an early age, it affects the areas of the brain responsible for regulation of the most basic functions. A child may in a constant state of "hyper-arousal" in which he is constantly vigilant for possible danger. He does not have a normal sense of time and may exist only in the present. In the face of any kind of stimulation, he may experience either a fight-flight response or alternatively what is referred to as a dissociative response, in which his mind in a sense shuts down. In either state the brain does not function well and a person is unable to think, much less to learn.

In order to treat this kind of early trauma, one must start at these lower centers of the brain in order to help a child develop the basic capacity for self regulation. This may involve such activities as massage, walking, or martial arts. In essence, one needs to rebuild the brain from the bottom up. Only in this way can one hope to engage the higher centers of the brain and help a child make sense of his experience and begin to use his brain to learn.

Yet the standard of care in pediatrics, as reflected in my successful recertification experience, is to document symptoms of inattention and hyperactivity and then treat with stimulant medication. And the fact is that in the short term, stimulants may help a traumatized child to calm down. But the benefits are short lived, and often there is an escalation to higher and higher doses of medication over time.

A teacher of mine who is a leader in the discipline of infant mental health recently asked me why pediatricians should do this work, and not "a new front line practitioner trained in well child medicine and developmental mental health." The fact is that pediatricians, who are on the front lines and see children and parents early and often, do treat behavioral and developmental problems as a huge part of their practice. A 2001 policy statement The New Morbidity Revisited: A Renewed Commitment to the Psychosocial Aspects of Pediatric Care by the American Academy of Pediatrics reflects this fact.

As is clear from the above story, pediatricians are doing this work under the influence of a powerful pharmaceutical industry and pervasive culture of medication. Therefore, if we are to "do no harm" it is imperative that pediatricians are exposed to the wealth of knowledge and research generated in the discipline of infant mental health. This research offers a different model for understanding and treating behavior problems from the "advice giving", "parent training", "behavior management" and medication prescribing that is currently the standard of care in pediatrics. In my experience, as well as that of as small but growing number of pediatricians who are learning about infant mental health, these ideas have great relevance to our practice, and offer the opportunity to help young children and families in profoundly meaningful ways.

President Obama, Parenting and Personal Responsibility

When President Obama was interviewed on 60 Minutes following the capture and killing of Osama bin Laden, he compared the wait while the Navy SEALs were in the compound and he didn't know what was happening with the wait to hear if his sick young daughter had meningitis. What struck me about this was the ease with which he, in front of an audience of millions, equated in value his role as father with his role as leader of the free world.

I am currently making my way through David Remnick's brilliant book The Bridge: The Life and Rise of Barack Obama. Remnick quotes Obama, describing what Remnick refers to as Obama's "credo for his career:"

What if a politician were to see his job as that of an organizer, as part teacher and part advocate, one who does not sell voters short but who educates them about the real choices before them?...The right wing, the Christian right, has done a good job of building these organizations of accountability, much better than the left or progressive forces have. But it's always easier to organize around intolerance, narrow-mindedness, and false nostalgia. And they also have hijacked the higher moral ground with this language of family values and moral responsibility.

Now we have to take this same language-these same values that are encouraged within our families-of looking out for one another, of sharing,of sacrificing for each other-and apply them to a larger society. Let's talk about creating a society, not just individual families, based on these values. Right now we have a society that talks about the irresponsibility of teens getting pregnant, not the irresponsibility of a society that fails to educate them to aspire for more.

Obama's version of family values clearly includes both personal and social responsibility.

In the last chapter of my forthcoming book Keeping Your Child in Mind I address the changes that need to be made to our society in order to apply the explosion of knowledge about the importance of supporting early parent-child relationships to promote children's healthy development. There are many obstacles. These include lack of value we place on primary care and mental health care services, need from more emphasis on prevention, need for changes to our medical education system to attract more primary care clinicians, and a modification of the influence of the powerful health insurance and pharmaceutical industries. The last chapter states:

If parents are to embrace this challenging yet highly rewarding task, they need to feel valued themselves. Just as a parent needs to hold a child in mind, we as a society need to hold parents in mind.

At times when the obstacles seem overwhelming, President Obama has been my inspiration. He forged ahead, despite what may at times have seemed overwhelming obstacles, because he believed he had something important to do. To again quote from Remnick's book:

Before embarking on the story of the political rise of Barack Obama, it may be useful to take time out for a mental exercise. Here it is:
Name your state senator.
No, not the two legislative titans who represent your state in Washington, D.C. The question is, who represents your district in your state capital?
Fine. Now that you have Googled the name and are trying to wrap your mind around the pronunciation and other such details, imagine that this undoubtedly decent, if generally anonymous, man or woman emerges in a very few years from Trenton or Harrisburg, Tallahassee or Lansing to become, as if in a reality television show, President of the United States.

I feel that I have an ally in President Obama. While of course I don't personally know him (though our birthdays are 2 months apart- me June 8th 1961 and him August 4th 1961-yes we will both be 50 soon-, and we got married and had kids within a few years of each other, both have University of Chicago ties, and lived just blocks apart in Hyde Park when he was a community organizer and I was in medical school!!) I know that he will understand what I am trying to do. I hope he reads my book.