Could sensory integration disorder be the primary problem?

As in an Escher Print, there may be a completely different way to see this issue from that offered in a new policy statement from the American Academy of Pediatrics on the role of sensory integration therapies for children with developmental and behavioral disorders. The statement cautions against using the diagnosis of "sensory processing disorder," because these are most likely symptoms of some other disorder such as autism or anxiety.

But I wonder if, as we learn more about the genetics and neuroscience of mental illness, we will find that the sensory processing issue is primary, and we simply organize the range of symptoms that may result from this problem into categories, in the form of diagnoses such as autism, OCD, anxiety and depression. These may in fact all be regulatory sensory processing disorders.

Sensory processing is intimately tied to emotional regulation, and our  ability to manage ourselves in a complex social environment. The world may feel soft and inviting, or harsh and dangerous. In taking detailed histories from families of children with a range of behavioral and emotional problems, I have found that there is almost always some problem of sensory processing, often from birth.

Consider this poignant description from Daphne Merkin, in a New York Times Magazine piece about her life-long struggle with depression:

It is an affliction that often starts young and goes unheeded — younger than would seem possible, as if in exiting the womb I was enveloped in a gray and itchy wool blanket instead of a soft, pastel-colored bunting.

One little boy (identifying information as always have been changed to protect privacy) I recently saw in my behavioral pediatrics practice carried a diagnosis of selective mutism, a form of social anxiety. He was able to tell his parents, once they became curious about experience of the world, rather than just trying to get him to talk, that he saw colors as sounds. This is a variation of sensory processing known as "synesthesia" where two sensations are combined into one. Certainly it alters a child's perception of the world. These qualities may be associated with great talents, particularly musical. But for a young child who does not have the words to express or make sense of his experience, it can be overwhelming.

Consider another little girl of three who I saw  "because she didn't play with other kids in school." Detailed history revealed that she was highly attuned to all the sights and sounds at school and intensely curious about her surroundings, at this point more so than in the other kids. There was a strong family history of similar traits. She also became easily overwhelmed by loud noise, such as fireworks. At home her social interactions were normal. Yet a question of autism was being raised. Kids with similar sensory processing challenges may become very disorganized in the school setting and receive a diagnosis of ADHD. Again the sensory issue may be the underlying problem.

I wonder if we should we abandon altogether the search for a "disorder," and instead focus on understanding a child's experience of the world and helping him to make sense of and manage that experience. As I have said many times on this blog and in my book, Keeping Your Child in Mind, children do well when the people who care for them understand them, and can see the world from their point of view. If we stay focused on this task, then a label with a "disorder" becomes necessary only  for the insurance company.

In my behavioral pediatrics practice at Newton Wellesley Hospital, where I children under age 6 with a variety of emotional and behavioral concerns, almost every child has sensory processing issues.  Many sound like Merkin's baby in a grey wool blanket. They may cry all the time and not sleep. In toddlerhood and beyond these issues take different forms, including  difficulties with daily tasks such as dressing and bathing.

I am not saying that all of these children should have "brushing therapy." The AAP statement points to the lack of evidence for sensory integration therapy. But there is a wide range in quality of these therapies. The essential element is that these problems exist in a caregiving relationship. For example, having a baby who does not like to be held and cries all the time can be a devastating experience for a parent. Feelings of inadequacy or even depression may occur. It is essential to address the sensory processing problem in the context of this relationship, and not simply treat the child. Stanley Greenspan's DIR Floortime model is the prototype of this kind of work.

I am looking to add an occupational therapist to my practice who is well versed in the field of infant mental health and understands how to work in relationships in this way. We need to bring the body into the treatment as early as possible to help children regulate their emotions. Helping them to feel comfortable in their body and manage their sensory experience, and to use the body for self-regulation, are essential elements of the treatment of any behavioral or emotional concern in a young child.

The poop wars: why Miralax is just a band-aid

A recent article in the New York Times identifies the possible overuse of Miralax for treating chronic constipation in children. Many take it on a daily basis for years, despite the fact that it is only approved for use in adults. As a pediatrician I have prescribed Miralax many times, and find it to be a very useful medication. The problem comes when only the symptom, and not the underlying cause, is treated.

In my experience the cause of chronic constipation is usually not insufficient fiber in the diet, but rather a combination of a habit of stool holding with sometimes complex emotional issues around autonomy and control (the exception being an underlying neurologic or other medical condition.) I'm all for a healthy diet, but if you make this an issue about eating more fruits and vegetables, you may be simply shifting the battleground from one end to the other. It is best to avoid battles over either what goes in or what comes out, because in these battles the child, by using his body, will always win.

 I hope readers don't mind some details-as a pediatrician I have to be comfortable talking about poop.  On excellent use for Miralax is for a toddler who has a hard painful stool and then holds in his stool for fear of repeating this experience.  This may be more likely to happen in a child who is sensitive not only to bodily sensations but also other forms of sensory input, such as sound and touch.  This problem can occur whether or not a child is in diapers. It is best nipped in the bud. Miralax acts by drawing water into the stool. If you give the right amount, the stool is too soft for the child to hold it in. With time the child will forget the painful experience and then go back to normal stooling.

Stool holding and conflicts around toilet training may also occur if a child feels things are out of control in some other aspect of his life. For example, most parents intuitively recognize that toilet training a toddler around the time of the birth of a sibling is not a good idea. One child I took care of dug in his heels around potty training when his parents were going through a difficult divorce.

Parents who have dealt with this problem know that kids can be very adept at holding in stool. They may stand in a corner turning red in the face with effort.  This may be interpreted as trying to push the poop out, but most of the time what is actually happening is that they are working to hold the stool in. Just as biceps get strong when you lift weights, the anal muscles can get very strong with repeated use in this way.  If this cycle is not broken, kids can go on to have problems for many years. However, with time and careful attention, kids can learn to use their muscles the right way and to have a healthy relationship with their body and bowel habits.

There are often tremendous social pressures on parents to toilet train their children. When parents come to see me in my behavioral pediatrics practice, they often have had ongoing conflicts with their child about sitting on the potty, but have recognized that this approach is not working. They may even wish to have their child take charge of the issue, only to be thwarted by pressures in the school setting. I am all for using motivation for encouragement when a child is ready. Pediatrician Barton Schmitt coined the term "poop candy" for rewards for pooping in the potty. But if a child is not ready, either physically or emotionally, even the promise of a trip to Disney World will not get him to poop in the potty.

Toilet training occurs at a time when children are taking ownership of their bodies. Eric Erikson referred to it as the stage of autonomy vs. shame and doubt. As much as is possible, its best to simply let a child take charge. If problems arise, short term use of Miralax to avoid stool holding while the underlying issues are addressed is certainly reasonable. But it should not be used for long-term treatment. I am not speaking to the safety of the drug, because its long-term risk is not known. Rather, using any drug for years without in- depth exploration of the cause of the problem, a trend far too common in our medication-happy culture, is not a good idea.

Is big pharma's grip on children's mental health care loosening?

Is it possible that our culture's over-reliance on the quick fix of medication to treat complex problems is waning? That alternative models of care offering meaningful support for early parent-child relationships are gaining increased recognition? My inspiring weekend with the current group of fellows in the UMass Boston Infant-Parent Mental Health Post-Graduate Certificate Program gives me hope that this is in fact the case.

One person in the group, an experienced neonatologist, has in the course of her clinical work increasingly recognized that what makes some premature babies do well and others not lies in the quality of their early caregiving relationships. She sent the group an article as evidence of the above trend, writing: 

I am attaching a very short paper from this month's Journal of Perinatology that describes incorporation of relaxation techniques into perinatal counseling. It uses terms such as "being with," "connections," and "compassionate presence." Ten years ago, this paper would have been flatly rejected by a prestigious journal as being anecdotal and merely descriptive. 

Peter Fonagy, the weekend's featured speaker, a great mind who has been likened to a modern-day Freud in terms of the transformative nature of his ideas, offers an alternative model from that presented by the pharmaceutical industry. Relationships can change the brain in more specific ways than drugs.

Fonagy identifies the quality that makes us uniquely human, different from animals. It is the ability to interpret other's behavior as having meaning. Humans alone understand that behavior is driven by motivations, intentions, desires and beliefs.

But the thing is, babies are not born knowing how to make sense of their own and other's behavior. They learn it from the people who care for them. When a parent is attuned with her baby in such a way that says, "I understand you," that child learns to understand not only his own mind, but also the minds of others. This learning takes place at the level of structure and biochemistry of the brain. This ability to interpret other's behavior in turn allows that child to make sense of the wider social world.

 Attuned early relationships of what Fonagy called "epistemic trust" are critical because they are "the superhighway for transmitting cultural knowledge." They are the means by which we learn about the world: how we learn to engage with others in a healthy and productive way.

Where does the motivation come from to shift from a quick-fix model of disease to one that promotes healthy relationships? The ACE study, which I have written about in previous posts, offers a kind of negative motivation. If we do not do something to change direction, there will be lots of bad outcomes in the form of such things as mental illness, violent crime, diabetes and heart disease. Fonagy offers more positive motivation. If we intervene early to promote secure safe relationships, we give children the tools to go out into the world, think creatively and move our society forward.

Fonagy points to three trends offering hope that things are changing in the way we as a society care for children and families. One is the increasing evidence of the impact of stressed early relationships on such long-term health outcomes as heart disease and obesity. The second is the decreasing influence of big pharma on mental health care, as evidenced by the marked decrease in development of new drugs to treat mental illness.  And third is the role of the Internet in disseminating new information. I am hopeful that this blog is one small part of that trend.

Giving Troubled Young Children a Voice

It is hard to believe that just two years ago I was drowning under a pile of prescription refill requests for ADHD medication in a busy pediatric practice. As those who have been reading my blog since its beginning know, I was disturbed by the over-reliance on psychiatric medication to treat complex problems, problems that I increasingly recognized had their origins very early in life. This approach was in effect silencing these children.

I left that practice to devote my time to prevention, both through clinical work with young children and their parents, and teaching. I wanted to bring the wealth of new research at the interface of developmental psychology, neuroscience and genetics, largely coming out of the discipline known as infant mental health, to my colleagues in pediatrics. This research offers opportunity for meaningful intervention in the early years, when the brain is most rapidly growing.

I had a resurgence of that old feeling of despair on Sunday when I read the New York Times Magazine cover story Can You Call a Nine-Year-Old a Psychopath? It was yet another example of over-simplified labeling.  Problems that represent a complex interplay of genetics and environment are placed squarely in the child, adding the letters CU-for "callous-unemotional"- to a long list of letter combinations used to label children. The article speaks of teaching empathy to children, but the approach is decidedly lacking in empathy for the child.

Children like the one described in that article are a tangle of complexity.  Sensory processing problems, which may be genetic in origin, are often associated with colic, sleep and feeding problems in infancy. Marriages are severely strained. There may be generations of mental illness, sometimes untreated and unrecognized. Parents feel overwhelmed with guilt and torn apart by multiple demands on their time and emotional energy. Treatment involves embracing the messiness of the problem at an early age, even before three, with support for the whole family.

Fortunately I have been given many wonderful opportunities to move this preventive model forward. This work keeps me afloat and hopeful in the face of the type of thinking represented in this article.

Michael Jellinek, president of Newton-Wellesley Hospital, hired me to build a program focused on early childhood social-emotional health. Jellinek was chief of Child Psychiatry at Massachusetts General Hospital for 30 years.  He really understands and values this preventive approach to children's mental health.

Most recently I had the honor of being invited by J. Kevin Nugent, director of the Brazelton Institute, to be on the training faculty for the Newborn Behavioral Observation System (NBO). This clinical intervention grew out of the original research of T. Berry Brazelton demonstrating the wide range of  individual behaviors of newborns. The NBO was designed as a relationship-building tool used to demonstrate a baby's unique capacities, with an aim to promote a positive connection between parents and children. I will  join an amazing group of people who give training sessions to a range of professionals who work with young children and families around the world.

In a previous post, I described a talk given by Robert Anda on the ACES study, a study that offers evidence of  the long-term negative effects of stress in early childhood on physical and mental health, and is currently exerting significant influence on social policy.  Anda spoke of the United States as a giant nursery of 4.3 million babies. He called upon us to think creatively to get those babies, especially those in an environment of risk, going in healthy direction. The NBO offers a way to do just that.

Another exciting event on the horizon is a parenting conference July 20-21 in Stockbridge, MA co-sponsored by the Austen Riggs Center and Yale Child Study Center. I will present alongside master clinicians and leading researchers in the field of child development. The conference "will examine how cutting-edge findings drawn from psychological, neurobiological and genetic studies on parenting clarify and deepen our understanding." My piece will focus on the child's contribution to the development of the parent. If any readers are interested in attending, I suggest making reservations ASAP. The Berkshires are a popular summer destination!!!

In another post I described of a great experience traveling to Seattle to speak with a group of pediatricians about this work, and our need to embrace a new paradigm of care in order to make use of our position in the lives of young children and families.

The icing on the cake is that this weekend I will have the great privilege of speaking alongside Peter Fonagy to the current fellows in the UMass Boston Infant Parent Mental Health Post Graduate Certificate program. I recently graduated from this terrific program, in which I had the opportunity to work closely with leaders in the field and a great group of fellows from a wide range of disciplines.

Fonagy, a world-renowned clinician and researcher, has had an enormous influence on my work.  I learned from him to listen to parents from a stance of non-judgmental curiosity about the meaning of behavior, rather than focusing on "behavior management." His ideas form the basis for my book Keeping Your Child in Mind.

Now rather than feeling like I'm drowning, I often feel like I'm walking on air- exhilarated by the opportunity to work alongside an amazing group of people who share a passion for helping young children and their families in meaningful ways.

Relationships are central to promoting children's healthy emotional development, relationships between caregivers and children as well as between clinicians and caregivers. Perhaps equally important are relationships among colleagues. Two years ago I felt alone and discouraged. Joining in this work with a wonderful group of people, including many that I have not mentioned here, I am hopeful that together our voices will be heard, in turn giving voice to young children and their families.

Postpartum Depression Rx Links Mother's Day and Children's Mental Health Month

On Sunday we celebrate mothers- bringing breakfast in bed, going out to dinner, buying flowers. In my personal experience, one of the greatest pleasures of Mother's Day, in addition to having the "day off," is to take joy in my beautiful children as they grow and develop and make their way out into the world.

D. W. Winnicott, pediatrician turned psychoanalyst, famously said, "There is no such thing as a baby." What he meant  is that one cannot fully understand a baby without considering the relationship with the mother. Equally true is that without a child, there is no such thing as a mother. In order to understand a mother's experience, it important to consider the child and what he or she brings to the relationship.

I have been thinking about this a lot as I participate in the important work of Representative Ellen Story's Postpartum Depression(PPD) commission. Rep. Story originally filed a bill that mandated universal PPD screening in multiple settings (OB and pediatric), but it was amended to a law that calls on the Department of Public Health to issue regulations on best practices for PPD screening. The law also created the Commission, whose  job is to help DPH in its work to come up with a proposal for what the state should do on PPD. 

I think this was a good plan. Universal screening is important. Liz Friedman, program director at MotherWoman, an Amherst based non-profit that was instrumental in he bill's passage, addresses the issue in a recent article.

Friedman continues to believe in the crucial importance of screening all new mothers, rather than screening only those whom doctors suspect might be struggling—a practice that runs the risk of "profiling" women who might seem distressed while overlooking others who are suffering but don't show it as obviously. 

However, without a carefully thought through way to provide treatment for women with PPD, universal screening is meaningless. One excellent model of care, the Community-based Perinatal Support Model, developed by MotherWoman, has been implemented in Franklin county with great success, is currently being implemented in Berkshire and Hampshire counties. It will likely be the basis of the recommendations to the DPH. 

The Community-based Perinatal Support Model (CPSM) has been developed to address the gap between screening and services for mothers. CPSM aims to prevent, identify and facilitate treatment of PMD (perinatal mood disorders) by creating a comprehensive, community-based, multi-disciplinary safety net for women.

Winnicott again is helpful in understanding why such a model would be effective. He coined the phrase 'the holding environment" to describe the way in which a mother, by being present both physically and emotionally with her baby, helps him to manage and contain intense feelings.  Quoting Winnicott: 

It will be observed that though at first we were talking about very simple things, we were also talking about matters that have vital importance, matters that concern the laying down of the foundations for mental health

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The phrase "holding environment" has been used to describe other caregiving relationships, such as a therapist-patient relationship. In the CPS model, a network of people, including nurses, primary care clinicians, mental health professionals, and other parents in the group setting, provides a "holding environment" for mothers who are struggling emotionally in these early months with their baby. 

What makes postpartum depression different from other forms of depression is that it occurs in the setting of responsibility for a new life-with a person who is completely dependent, and brings his or her unique qualities to the relationship.  To fully hold the mother's experience, it is important to recognize the baby's contribution. For example, when a baby is born with difficulties settling to sleep, or  is not naturally cuddly, it will have significant impact on the mother's emotional experience. Sleep deprivation and feelings of inadequacy may compound an existing depression. In turn, the mother's state of mind, particularly if she is preoccupied with her own distress, may impair her ability to help the baby to contain and manage his experience. A recent study showing that mother's struggling with anxiety and depression often wake their babies at night offers an example of how a mother's emotional state may affect her child's development. 

How fitting that Mother's Day occurs in the middle of Children's Mental Health Awareness Month. The work of Representative Story and the PPD commission is a tribute to both.  When we as a society attend to the emotional needs of new mothers, we help them to emerge from pain and suffering to take joy in their children.  This not only promotes their children's healthy development, but it makes for a really great Mother's Day!!

Stressed Doctors, Parents, and Children

This past weekend I had the privilege to present the ideas I have been describing in my blog and book to an audience of general pediatricians at the North Pacific Pediatric Society.  It was a wonderful, highly receptive audience. The essence of the problem, in my opinion, is that this cascade of stress impairs effective listening.  We have a basic human need to be heard and understood. This holds true for clinicians, parents and children.

 The American Academy of Pediatrics, in a recent policy statement, has charged pediatricians, along with a very long list of things to do in a 15-minute visit, with preventing "toxic stress" or stress in the absence of a secure, safe caregiving relationship. Extensive research has shown that these kind of relationships can protect against many negative health outcomes. We are ideally suited for this task, as primary care clinicians as a profession have by far the largest interface with young children and families, and usually have a relationship of implicit trust.

Time to listen to parents and an opportunity to share their own experiences with other clinicians are two essential components needed to enable primary care clinicians to take on this critical task of promoting healthy relationships. Currently a pediatrician is paid more for a 10-minute visit for an ear infection (that may very well get better on its own) than a 50-minute visit for an emotional or behavioral concern. On the policy level, changing this would be a good place to start.

As is usually the case after giving such a talk, I think of points that I would have liked to address but did not. Fortunately I have this blog, so can add them here.

 1) I spoke about the need to reframe a child's "difficult" behavior as "stressed" behavior. Over the course of the weekend, a number of references were made to the "difficult" parent. Equally important is to reframe this notion of the "difficult" parent" as the "stressed" parent. We cannot help the child if we do not have an empathic stance toward the caregiver.

 2) I talked about the significance of D.W. Winnicott's contributions, but neglected to mention his very important notion of the "good-enough mother."  The essence of this idea is that mistakes we make as parents, moments when we miss our children's cues, lose our cool or any number of things that inevitable go wrong in the daily life of families, if these "mistakes," or disruptions, are recognized and addressed, are not only OK but essential to move development forward in a healthy direction.

 3) A general pediatrician questioned why I, as a specialist in infant mental health, would ever be referred a patient with colic, a problem that is so common and so much considered the job of the primary care clinician. The point I wanted to make is that meaningful evaluation of this issue may involve more than a 15-minute visit. Colic is traditionally viewed as residing in the baby. But when we see it as a relationship problem, it makes sense to give it more time. For a new mother who imagined blissful hours of with her newborn, having a baby who is either crying or sleeping with little time available for gazing lovingly into each other's eyes, colic can be devastating. At the very least there is severe sleep deprivation, and there may be feelings of low self-esteem and even depresssion. Bringing these issues out in the open at the beginning, validating the mother's experience and helping her to find support, may prevent more long-term problems.

 The last talk of the weekend was about mindfulness. The speaker was a specialist in adolescence, and she was advocating for mindfulness both for parents of teenagers and for the clinicians in the audience. She offered Jon Kabat-Zinn's definition:

Mindfulness means paying attention in a particular way; On purpose, in the present moment, and nonjudgmentally.

This is one tool that can help us to slow down just enough to be able to carefully listen to each other. In doing so, we will go a long way in stopping this cascade of stress that has potential to wreak havoc on our society in the long run.