Sock Bump Anxiety Disorder? Understanding Children with Sensory Over-responsiveness

In the December issue of the Journal of the American Academy of Child and Adolescent Psychiatry there is an article, with an accompanying commentary, that encourages me to think that perhaps the discipline of psychiatry is making moves from the "what" to the "why" of mental illness. Alice Carter, a brilliant researcher at UMass Boston, has an article entitled Sensory Over-Responsivity, Psychopathology, and Family Impairment in School-Aged Children.

In their editorial in the same issue Cynthia Rogers and Joan Luby write:

This work suggests that developmental scientists and mental health clinicians should recognize sensorimotor processing as an important independent developmental domain and key area of challenge in early childhood that has tangible implications for behavioral and emotional functioning.

Interestingly Joan Luby has written about the validity of diagnosing major depressive disorder in preschool children, an idea about which I have grave concerns. I wrote, in a response in the Boston Globe when her work on this subject was first published:

My sense is that these children process the world differently. One mother described carrying her screaming son for hours until she realized that he didn't want to be held. Another mother said her daughter was "not cuddly" and difficult to feed. As they become toddlers, the issues change. I hear about what I call "sock bump anxiety," where many changes of socks are required to find the one with the right seam in the toes. "Fun" family outings to a county fair can end in disaster as kids become overwhelmed by all of the sights and sounds. Intense tantrums and meltdowns are frequent.

Now I wonder if Luby an I are more on the same page than I had thought. The question, in my opinion, should be not "what is the disorder" but rather "what is the expereince of this particular child and family?" Unfortunately, as Dan Carlat states in his book Unhinged: the Trouble with Psychiatry

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’.

My clinical experience is consistent with Dr. Carter's findings. I see young children with a wide range of behavioral concerns. Sometimes they have symptoms of anxiety. Others are "explosive" or "hyperactive and impulsive" Still others have rigid rituals, and teachers have raised concern about autism spectrum disorder. In almost every story, there are symptoms of sensory over-responsiveness. These symptoms are inevitably accomapied by problems of self-regulation and in fact have been called "regulatory disorders" in the Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood–Revised(DC:0-3R). And as Dr. Carter describes, these symptoms are very disruptive to family functioning. Often siblings are the most dramatically affected when their needs are relegated to the back burner, as families struggle to avoid and then manage the frequent meltdowns that inevitably accompany these sensory difficulties.

I have wondered what it is that makes one child with sensory over-responsiveness and concurrent problems of self-regulation develop depressive symptoms, other autistic symptoms and yet another hyperactivity and attention problems. I suspect we will find that the gene(s) responsible for sensory processing are associated with different genetic vulnerabilities, and so the symptom takes a different path.

Occupational therapists have long recognized the significance of these problems, and many have advocated for adding a diagnosis of "sensory integration disorder" to the DSM list. Rather than debate whether sensory over-responsiveness is a disorder in and of itself, it is in my opinion, enough to recognize, as Dr. Carter has done, that it can be a significant problem for a child and family. Then primary care clinicians, mental health care providers as well as friends and family can offer the validation and support these families need. Waiting for a DSM defined diagnosis to emerge may narrow thinking and cloud our view of the complexity of the family's experience (Such a label maybe necessary, unfortunately, to bill insurance for services.) As I have said before on this blog, these "problems" of sensory over-responsiveness may be transformed into adaptive assets when children, validated and understood by their caregivers, develop the language skills and capacity for self-regulation that come with growing up.

A Small Town, A Little Boy, and a Terrible Disease

(This post was written for a former patient from my days of doing general pediatrics, who turned 11 on 11/11/11)

Charley was with his mother in my office for his three-year-old check-up. Having taken care of Charley since he was born, I knew his family well. They had relocated from New York to our small New England town. As often happens in a small town, we shared many other connections. Tracy, Charley’s mother, taught at the school my children attended. We had many friends in common. Shortly before this visit, I ran into her outside the community center after dropping my kids at camp. Tracy was 5 months pregnant with a girl. “How’s your summer going?” I asked. Her smile was huge. “Great!” she replied. “Sam (her older son) is in camp so I get to spend all this special time with Charley.” She looked over at him as he ran around on the grass. “I fall more in love with him every day.”

Charley sat quietly on the exam table as our conversation flowed easily from social events to sleep habits. He was generally healthy, but was in early intervention for low muscle tone and mild language delay. His language was progressing, and the physical therapist, Tracy told me, was not concerned. “But he’s having some trouble climbing stairs,” she said. This struck me as odd, as Charley was a very active boy in an athletic family, and I made a mental note. Later that afternoon, I called our local pediatric neurologist. “I should see him,” he said. “And send him to the lab for a CPK (an enzyme made by muscles).” I called Tracy. She and her husband Benjy decided that they preferred to go to a neurologist in New York, and would schedule their own appointment, but agreed to pick up the lab slip for the blood test.

One evening several months later I was on call, the only doctor in the office with a sick child. I was on the phone with the ICU doctor at the hospital when my nurse handed me a slip of paper.

Charley S.
Critical Value
CPK 21,000

An hour later I was home, having somehow managed to transfer the little girl. I held the message in my hand. I had never seen a CPK this high, the normal number being under 100. After anxiously pacing around for a few minutes, I paged the neurologist I had originally spoken with. “He has muscular dystrophy,” he said without pause. I hung up the phone, trembling. I would have to tell a family that their son was going to die.

I needed to speak with the neurologist who had seen Charley. But I didn’t know who it was. So I had to call Tracy. I tried to be calm, explaining that the test results weren’t quite normal and that I wanted the name of the neurologist they had seen in New York. She gave me his number and asked, “How abnormal are they?” “They are high”, I replied. “I’ll speak with the neurologist tonight and meet you in the office first thing in the morning.” “OK”, she said. I hung up the phone and said to myself, “She knows.”

I spent the next hour on the phone with the New York neurologist. He said it was most likely Duchene’s muscular dystrophy (DMD). He described the current prognosis as “wheelchair by 10, death by 20”. But he suggested that I share with Charley’s parents that current research in gene therapy might offer a cure in the next 10-20 years. He wished me luck. During the few minutes that I slept that night, I had tormented dreams about telling them.

Tracy came alone. Years later she told me, “I purposefully kept quiet that morning as Benjy kissed the kids goodbye and went off to work just to give him one more morning of a normal life. ”

The nurse led her to an exam room and reported to me, “She’s a little shaky.” “That makes two of us,” I replied. I took a deep breath and walked in the room. I sat next to Tracy and held her, both of us sobbing. However, I was sure to reinforce that there was hope- that current research offered the possibility of a cure.

After a few weeks of living in shock, Tracy and Benjy took action. They started Charley’s Fund, whose sole aim is to raise money for research to find a cure for DMD. In seven years they have raised over $17 million. In the Fund’s most recent brochure, they write, ”All that “plugging away” has led to a very exciting moment in DMD history: first-ever human clinical trials for DMD boys.”

Tracy told me of a recent visit to the neurologist. “The doc examined Charley and just blurted out "Wow...this is epic!" He could barely believe that Charley can hold his head off a pillow when lying on his back for 60 seconds. The fact that he can even jump off the floor, let alone a considerable distance, is amazing and I know that is due to the fact that we received his diagnosis early and started steroids, supplements, night braces, and a nightly physical therapy routine. I know many, many parents of DMD kids who were not diagnosed until 6 years old or even later because teachers, physical therapists, friends, even pediatricians tell them that all kids develop at their own pace and your son will catch up in time.”

I think often of that moment I stood looking at the lab slip. It was a last moment of calm before a collision between the small town doc and the family whose life would be forever changed. I sometimes wonder if it was the intimacy of the small town life that in some way led to the early diagnosis, and to the explosion of energy now propelling Charley’s family, and all the other boys with this devastating diagnosis, forward toward a cure.

Parenting in China: Academic Achievement or Empathy and Resourcefulness?

Recently I learned that a publishing company in China with the delightful name of "Good Morning Press" has purchased the rights to publish my book Keeping Your Child in Mind. I admit that China was the last country I expected to publish my book, which is in many ways the antithesis to the controversial book Battle Hymn of the Tiger Mother that received so much attention earlier this year. It made me wonder if, just as many Americans question the need to replicate the very rigid parenting methods espoused in the book in order to "compete with China," the Chinese (or at least some segment of the population) have recognized the value of instilling not high level skill, but rather empathy, flexibility, cognitive resourcefulness and social adaptation. The approach I describe in my book, based on over 40 years of developmental science research, points the way towards these qualities.

When Chua's book came out, I wrote the following post (I repeat it here, as it predated my Boston.com presence):

"All this talk about Amy Chua’s parenting techniques has me thinking about Brandon Fisher, the manufacturer of drilling equipment who President Obama recognized in the State of the Union Address for his critical role in the rescue of the Chilean miners. While I cannot claim to know anything about Fisher's upbringing, I do know a great deal about what qualities in a parent-child relationship lead to the characteristics he exhibited, namely empathy, flexibility and resourcefulness.

I wonder if the anxiety being experienced on a grand scale by American parents in the wake of Chua’s book is due to the fact that that while severe parenting techniques designed to achieve academic success may not be palatable, parents feel a void when it comes to finding an acceptable alternative model, as exemplified by the Boston globe op ed, The tiger mother roars, and slacker parents shudder.

John Bowlby, the father of attachment theory (no relation to “attachment parenting” as described by William Sears) describes the importance of a secure early relationships in raising a child who, in Bowlby’s words, is “self-reliant and bold in his explorations of the world, co-operative with others, and also-a very important point-sympathetic and helpful to others in distress.”

Contemporary research offers a close up view of a secure parent-child relationship that can instill these qualities. It involves a balance of empathy and limit setting. There are four key elements. The first is wondering about the meaning of a child’s behavior rather than responding to the behavior itself. The second is empathy. This is more than saying “I know how you feel.” It means actually feeling what your child is feeling, but reflecting it back to him in a way that says, “I know you’re upset, but we’ll manage.” The third is containing difficult emotions, often in the form of setting limits. Limit setting is about teaching the essential life skills of frustration tolerance, impulse control and emotional regulation. And forth, and perhaps most challenging, is doing all this without letting your own distress get in the way.

Lest this list cause a parent to feel overwhelmed by the enormity of the task, research of Ed Tronick, child development expert, offers hope. If parents are attuned with their child only 30% of the time, if 70% of the time you don’t connect with your child in the way I describe, as long as most disruptions are recognized and repaired, development moves forward in a healthy direction. In fact, disruptions and their subsequent repair are essential in instilling resilience, an important fourth attribute to add to Bowlby’s list. D.W.Winnicott, pediatrician turned psychoanalyst coined the phrase the “good-enough mother” to describe a mother who is not perfect, and in her very imperfection helps her child to manage life’s challenges in direct proportion to what he is capable of.

Chua’s book, in addition to creating mass unease in American parents, has raised fear regarding our ability to compete with China. Towards that end, raising a generation of Brandon Fishers, citizens with the qualities of empathy, flexibility, resourcefulness, and resilience, is essential. In order to accomplish this task, we must support parent-child relationships from the beginning. There is extensive evidence that children learn these skills in infancy, when the brain is making as many as 1.8 million neural connections per second.

Unfortunately our country does not value parents in this way. Our lack of support of early parent-child relationships is exemplified by our maternity leave policy that lags far behind other countries, as well as the rapid increase of prescribing of psychoactive medication to very young children. This second phenomenon is in turn inextricably linked with the very powerful health insurance industry and the lack of value placed on primary care and mental health care services.

Public policy to support early parent-child relationships is essential. For example, postpartum depression can negatively impact a mother's ability to be present with her child in a way that promotes healthy emotional development. Recently a new law was passed in Massachusetts that calls for a special commission to come up with policy recommendations to prevent, detect and treat postpartum depression.

Contemporary research in child development offers an answer to the questions raised by Chua, both on a small scale: a model of parenting to follow, and on a large scale: a model of social policy to support parents in this task. I thank her for providing the motivation to address issues that are critical for the future of our children and of our country."

Perhaps this interest in my book implies that China (at least in some small way) has caught on to the importance of valuing parent-child relationships. If so, now more than ever is the time for our country to recognize the need to nurture these, in a sense, American qualities of empathy, flexibility, resourcefulness and resilience.

Antidepressants in Pregnancy and Autism: A Possible Link

Studies abound that aim to answer both the question "What causes autism?" and "What is the reason for the increase in incidence and prevalence of autism?" A study published in the November issue of the Archives of General Psychiatry, Antidepressant Use During Pregnancy and Childhood Autism Spectrum Disorders caught my attention. As both the prevalence of autism and the use of SSRI's (selective serotonin reuptake inhibitors) have increased dramatically in recent years, and SSRI's are powerful medications that act on the brain, the findings do seem plausible.

Writing about research for a general audience, I want to say at the start that this is a preliminary investigation, one that simply raises a question. Pregnant women or those planning to conceive who are on these medications should not rush to go off them. The authors of the study are careful to say that, "The potential risk associated with exposure must be balanced with the risk to the mother or fetus of untreated mental health disorders." Untreated mental health disorders do pose a risk to mother and fetus. Women who are pregnant or of childbearing age and contemplating getting pregnant who have been on SSRI's may have a great difficulty getting off of them even if there is a question of risk to a fetus.

In this population based study done at the Kaiser Permanente Medical Care Program in Northern California, the researchers found

a 2-fold increased risk of ASD(autism spectrum disorder) associated with treatment with selective serotonin reuptake inhibitors by the mother during the year before delivery, with the strongest effect associated with treatment during the first trimester.

They found that there was no increase in risk for ASD if a mother had been treated for mental health problems but did not receive SSRI's. This finding attempts to answer the question of whether it is the depression or the drug that is associated with ASD. Their findings suggest that it is the drug.

The authors conclude:

Although the number of children exposed prenatally to selective serotonin reuptake inhibitors in this population was low, results suggest that exposure, especially during the first trimester, may modestly increase the risk of ASD. Further studies are needed to replicate and extend these findings.

My reaction to the study is not its implication for women who are pregnant now, but for young girls and adolescents who are being placed on these medications, often by pediatricians, for relatively mild symptoms. SSRI's have been shown to be effective for severe depression, and certainly in the setting of suicidal behavior, the urgent need for treatment may outweigh the potential long-term risk.

Recently I had the privilege to read an advance review copy of a book due to come out this April with the compelling title Dosed: The Medication Generation Grows Up. A well-researched book written by a journalist who has herself been on SSRI's since her teenage years, it shows how these drugs are often not a quick fix, but rather may be followed by a decades-long relationship with psychiatric medication. One particularly striking story is of a woman started on a SSRI at age 11 who, now pregnant in her thirties, is unable to get off them despite her strong desire to protect her unborn child from the potential risks of the drug.

Because these medications can cause such dramatic symptom relief, it is understandable how parents, physicians and teenagers themselves are drawn to them. Seeing your child in emotional pain is one of the greatest challenges of being a parent. However, in the absence of suicidality, holding them through these crises, with a combination of careful listening and quality psychotherapy, may in fact give them the tools to manage future crises they may encounter as they venture out into the world on their own. In my book, Keeping Your Child in Mind, the chapter on adolescence shows how these interventions can promote healthy emotional development.

Shortage of quality mental health care services, as well as lack of support for parents of teenagers, may make this kind of help difficult to attain. But now that this risk of SSRI's to a fetus is out there as a possibility, I believe it is more important than ever that we as a society make an effort to provide treatment for children and adolescents with mild to moderate depression that does not include prescribing psychiatric medication.

Supporting Fathers' Emotional Health is Essential for Children

Sometimes in my behavioral pediatrics practice I have the privilege of doing in depth work with a mother and father together. Recently I saw a four-year-old girl with "explosive behavior." After a number of session spent focusing on a range of issues, her father began to speak about his alcoholic, emotionally abusive father. He found himself full of rage, rage that he now recognized was unfortunately often misdirected at his daughter. Perhaps because of the trust he had developed in our work together, he accepted a referral to therapist, with the hope of being able to put his feelings of anger in their rightful place.

More often that not, however, fathers do not come to these visits. I hear stories from mothers of their spouse's terrible emotional stress. Often there is intense conflict between mother and father over discipline techniques. Because the mother is in the room with me, I can listen in depth to her story . But when I encourage the father to come so I can hear about his experience, there are many obstacles. Most common is "he can't get off from work." A close second is "he doesn't believe in this kind of help," or "he doesn't like to talk about feelings."

I hope that a new study published in the December issue (online today) of Pediatrics, Paternal Depressive Symptoms and Child Behavioral or Emotional Problems in the United States will encourage fathers to seek help, and motivate clinicians to strive to include fathers in treatment of young children with emotional and behavior problems. The study shows, not surprisingly, that paternal depression and other mental health problems affect the emotional state and behavior of children.

The literature on postpartum depression in mothers, and its long term effect on child development, has exploded in recent years. Yet services for women struggling with perinatal emotional complications are often hard to come by. Many people, as I describe in a previous post are working hard to address these needs. Unfortunately fathers have not received this kind of attention.

This past weekend my local paper ran a story Swedish dads swap work for childcare about fathers making use of Sweden's very generous parental leave policy. Sweden has the right idea, not only in generous paid parental leave, but also in supporting fathers taking on the role as primary caregiver.

We need to take a good look at why we have lagged behind on this front, despite significant increased presence of fathers in the lives of their growing children. This latest study published in Pediatrics shows that the time has come to pay attention. I for one will continue to give fathers of my child patients careful thought, and encourage their participation in treatment. The vast majority of parents, when they see that getting help for themselves will help their children, are motivated to do this difficult and sometimes painful work.

Creativity Needed in Balancing Family and Career

This past summer I wrote a post in response to a New York Times Op Ed that criticized women physicians who work part time. I concluded:

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

This idea holds particular relevance for me now, on the eve of starting a new job.

When I was in my late 20's, I had what in many ways was an ideal job. I was practicing pediatrics at Revere Community Health Center, an affiliate of Massachusetts General Hospital. I loved my colleagues and had a wonderful patient population. I was on staff at MGH and on the faculty at Harvard Medical School, where I had the opportunity to teach interviewing skills to first year medical students.

One of the best parts of the job was that I did supervision around my cases, a form of training usually reserved for mental health professionals, with Michael Jellinek, chief of child psychiatry at MGH. He helped me address the complex emotional needs of my most challenging patients and sort out my feelings when they got in the way.

One particularly memorable patient was a young teenager with poorly controlled diabetes who had experienced significant emotional trauma. As an example of enactment of my rescue fantasy, I always agreed to see her, even when she came very late for her appointment. On a couple of occasions, when she was on the verge of hypoglycemia, I gave her my lunch. Speaking with Dr. Jellinek allowed me to be a more effective doctor for her.

The only downside of that time in my life was that I was single. Then I met my husband, who lived in New York. As he had an established ophthalmology practice and a daughter from a previous marriage, in order to be with him I would have to move. As I was in love and wanted to start a family, it was an easy decision to make. But leaving my job, and in particular my work with Dr. Jellinek, was sad and painful.

To sum up the next 20 years- I had two children, worked part time, teaching and practicing general and behavioral pediatrics. In 2000 my family relocated to the Berkshires where I took a job in a busy small town practice. In 2004 I began to study as a scholar with the Berkshire Psychoanalytic Institute in Stockbridge. There I discovered, among others, the work of Winnicott and Fonagy, and the growing discipline of infant mental health. I stopped doing general pediatrics in order to be able to keep up with the increasingly busy lives of my then school age children. I began my writing career, first for the Boston Globe and then for my new book. Keeping Your Child in Mind. I enrolled, in the fall of 2010, in the UMass Boston Infant-Parent Mental Health Post-Graduate Certificate Program in which a group of fellows from a range of disciplines met for one 3-day weekend a month for 10 months.

On the Saturday of our February weekend there was an op ed in the New York Times about a mother's struggles with managing her rage toward her child. With my mind in high gear as a result of the intellectually stimulating environment of the weekend, I composed a letter to the editor, which was published the following weekend.

That night I received an email from a pediatrician on staff at Newton-Wellesley Hospital who I had met at a conference a few years earlier. He had read my letter and had an idea.

Dr Jellinek, who is still chief of child psychiatry at MGH, but now also president of Newton-Wellesley Hospital, was embarking on a major initiative to expand child psychiatry services. This pediatrician had followed my work through my writing, and knew that I had once worked with Dr. Jellinek. Perhaps, he thought, there would be a place for me in this new plan.

Nine months and many meetings later, plans have been finalized for me to start a program (one day a week for now, as I still live in the Berkshires) at Newton-Wellesley Hospital integrating services of OB, pediatrics and psychiatry to promote early childhood social and emotional health. It will focus on perinatal emotional complications and address the emotional needs of the 0-5 age group. Dr. Jellinek is as kind, smart and thoughtful as I remember him. The only difference is now I call him Mike.

Though I could not have recognized this as they were happening, the discontinuities in my professional life, made to accommodate family, have led me to a very good place!