The Diagnosis (Unfortunately) Left Out of DSM5: Attenuated Psychosis Disorder

As the much debated DSM5 finally enters the hands of doctors, policymakers, insurers and other interested parties next month (MAY/2013), I am reposting an article I wrote last fall. It concerns what I and many other mental health advocates view as a grave DSM5 omission: keeping the  proposed diagnosis of Attenuated Psychosis syndrome out of the list of recognized diagnoses. Yes, unlike the many critics of this handbook who have decried its inclusion of what they view as too many conditions, my beef is the exclusion of one with which I’ve had personal experience as a mother. With treatment, my son made a complete recovery from attenuated psychosis syndrome. Now, I shudder to think what this omission means for young people who are suffering the symptoms of early stage schizophrenia. One thing I am sure of: too many will continue to lack the benefits of insurance coverage and medical expertise that would be conferred by a DSM5 diagnostic designation. My post follows…

Attenuated Psychosis Syndrome will be included in the new DSM5 but only in its “Section 3,” a category of conditions designated as “needing further research.” Oddly, others in this category include: Internet use gaming disorder, Non-suicidal self-injury, and Suicidal behavioral disorder.

The really bad news: Section 3 disorders generally won’t be reimbursed by insurance companies for treatment, since they are still undergoing research and revision to their diagnostic criteria.

So after some three years of pitched battle in the professional and popular press, the revised diagnostic manual of The American Psychiatric Association (APA), has not approved this still controversial diagnosis. And since the DSM is revised only once a decade)  that means it will be at least that long before the early stages of schizophrenia will again be considered for eligibility for reimbursable treatment. The very worst news in these developments is that even though early intervention is the best way to head off this chronic debilitating condition, many families will lack the information and resources to provide it.

This young man and his mother appeared on PBS Newshour to speak about the benefits of his treatment for attenuated psychosis syndrome he received at the SF PREP Clinic

Attenuated psychosis is a condition most often applied to young adults showing their first (thus weak or attenuated) psychotic symptoms; symptoms such as hearing voices, disordered thinking, paranoia and social withdrawal that could, if left untreated, lead to full blown schizophrenia or bipolar disorder. I’d hoped this revision of the DSM would take the full step of classifying it as a disorder so that more young people, like my now grown son Alex, would be able to receive treatment earlier rather than later when remission is more likely.

However, the reality is that attenuated psychosis will still be treated in cases when young peoples’ families can pay out of pocket for care; when a state or city offers subsidized “early psychosis” care often under the rubric of a research study (for example the UCSF PREP program, see below). Another more likely scenario is that a mental health provider will diagnose someone as having full blown schizophrenia when, in fact, he or she has not yet reached that standard (the situation for Alex at age 18), but the provider knows the patient will not have covered care without this diagnosis. Or the affected person will be diagnosed and treated for one of the presenting symptoms that often accompany attenuated psychosis, with depression, anxiety being the most common.

To provide details on how and why I arrived at the point of view that attenuated psychosis should be recognized as a disorder, I’ll repost here my article of last spring in which I advocate for this outcome.

What’s At Stake for Parents and Children in the DSM-5 (or DSM6) Battle?

Fevered debate over the final terms of the DSM5  may now be officially over but I have no doubt that many of the fiercest arguments that have surrounded it will  continue unabated. I for one will continue to advocate for early recognition and treatment for psychosis. But even without this recognition, intervention for the first signs of psychosis is available on a limited basis worldwide.

There are now some 20 clinics and leading psychiatric hospitals in the U.S. (with many more in Europe, Canada, Australia and the U.K.) that have already established specialized treatment programs for treating early psychosis. Indeed, these are the programs that will likely produce the definitive data that will ultimately vindicate the change in diagnostic criteria that will enable wider treatment for early psychosis, thus sparing millions more youth from the full blown disorder of schizophrenia.

One such pioneering program is the PREP program in San Francisco, affiliated with the University of California, San Francisco (U.C.S.F).  I participated as a keynote speaker on June 8, 2012 in the 1^st Annual PREP (Prevention and Recovery in Early Psychosis) Conference held in San Francisco. The day-long free educational event was designed for mental health practitioners, youth, parents and anyone else interested in learning the theory, symptoms/warning signs, methods of treatment of early psychosis in the 16 to 30 age group. (Click on the conference title above for more information about the PREP CLINIC and the conference.)

One of the most confusing issues  at the heart of the dispute over early psychosis diagnosis and treatment concerns the “false positive” argument: that is, the possibility that young people whose symptoms don’t progress to a full blown state of schizophrenia would be stigmatized by the diagnosis and then receive unnecessary treatment.

To these arguments, I would say first that people should not be forced to make decisions about their mental health based on whether that care will stigmatize them in the eyes of others. Secondly, I take issue with this notion of “unnecessary” treatment.

The False-Positive Straw Man

The possibility of a young person receiving a false-positive diagnosis for schizophrenia has worried plenty of people inside and out of the psychiatric profession. And there is good reason to take a close look at this issue. Based on the available studies, only one-third of young people with early symptoms of psychosis actually progress to a full-blown, more serious disorder—without treatment. At the center of this debate is the cost-benefit analysis of the early intervention option, usually intervening with cognitive behavioral therapy and/or antipsychotic medication.

The noted Australian early psychosis researcher Patrick McGorry pinned the vehemence of the current controversy on residue from other recent disputes within the American psychiatric profession. In 2006, he complained to Time magazine that while research and funding to support early psychosis treatment is blossoming in other countries, “it has ground to a halt” in the United States. “They’ve clouded the issue with the whole business of overmedication of younger children for ADHD,” he said.

To confirm McGorry’s assessment of what’s behind American psychiatry’s hysteria around expanding the diagnosis for psychosis one need only listen to the dire predictions of Allen Frances, the editor of the last DSM edition, who has led the charge to exclude the “attenuated psychosis” diagnosis from the DSM-5.  Frances has written that early intervention would cause “a wholesale medical imperialization of normality,” and create a “bonanza for the pharmaceutical industry,” for which “patients would pay a high price [of] adverse effects, dollars, and stigma.” Frances said he regrets the role played by the DSM-IV in creating “the bipolar fad” of the last decade by opening up that diagnosis to children and adolescents. More recently Frances has characterized the concept of prevention in psychiatry as little more than a pipe dream, certainly grossly premature in the case of attenuated psychosis.

Defending his work with early psychosis and the concept of prevention, McGorry explained, “It’s unacceptable to wait for patients to slide into madness, though it’s impossible to predict with any certainty which ones will. You’ve got to do something.” By this, he seemed to mean adding an antipsychotic medication to the treatment mix.

I appreciated McGorry’s clear understanding of just how miserable his patients typically are while they struggle with the onset of psychotic symptoms. In the Time article, I found his description picture-perfect: “They’ve got no friends. They’re sitting alone in their bedroom, their lives passing them by. You’ve got to actively research what’s going to help them. The critics have been right to raise issues, but you can’t neglect people when they clearly have a disorder, just because you can’t technically fit them into our arbitrary system of classification.”

Since his original clinical trial, McGorry and his Australian colleagues have gone on to treat many more young people who are at ultra-high risk for psychosis. Some guardedly good news has emerged from these recent trials. The six-month transition rate to psychosis, which was a 34 percent rate in McGorry’s earlier trials, had, by 2010, dropped to 9.2 percent. What does it mean? McGorry speculates that this drop in conversions correlates with many of his patients being identified earlier in their disease processes. As a result, he thinks they respond better and quicker to the interventions they’re getting. McGorry does not think, as some of his critics assert, that most of these young people were “false-positives” when they first entered treatment.

Alex Self Portrait at 17

I would like to put a human face on this concept of the “false-positive.” Let’s say  a young person comes for treatment with pre-psychotic symptoms including paranoia, weak hallucinations, depression, social withdrawal and the beginnings of disordered thinking–all would fit under an “attenuated psychosis syndrome” diagnosis. Depending on how long his symptoms had been going on and how frequently they occur, under the proposed treatment model, he would be deemed at “high risk” of developing full blown schizophrenia. As a first stage treatment, he would then receive up to six months of cognitive behavioral therapy and possibly participate in family therapy to help him and his loved ones manage and hopefully arrest these symptoms. He would not receive antipsychotic medication unless and until his symptoms worsened or continued unabated after several months of CBT. Without knowing whether this young man’s symptoms would have progressed to full blow SZ the question is then: was the treatment he received a net loss or gain to him and his family?

The Definition of “Staged Treatment”

These days, McGorry is very careful to describe his treatment approach as strictly “needs-based.” He outlines a clinical staging model, in which an individual’s treatment moves from one stage to the next only after his symptoms escalate. After determining that the individual meets the criteria of ultra-high risk—someone between the ages of sixteen and thirty who is experiencing attenuated symptoms of psychosis, or is within a year of a first psychotic episode—the first stage of care he receives at McGorry’s clinic is cognitive behavioral therapy and the daily intake of omega-3 fish oil, a readily available nutritional supplement that has been shown to be effective in treating early psychosis, likely by enhancing the ability of the brain’s synapses to communicate. Antidepressants will also be considered if the young person’s depression is present and severe, and she doesn’t respond to CBT. And then, if indicated, McGorry recommends a very low dose of antipsychotic medication, ideally for a limited period of time of six weeks.

If this approach to medical care sounds familiar, that’s because it is the way most medical conditions are treated. Think about the treatment of high blood pressure as a precaution against strokes and heart attacks. Consider the removal of pre-cancerous tissues as a defensive move against tumors.

This same staged model for treating early psychosis has now been replicated and studied in a growing number of national health systems and university-affiliated clinics in the United States, United Kingdom, Europe, Scandinavia, and around the world. From the outside, it looks to be a constant balancing act between risk and benefit; the codifying of each symptom and step of treatment into a fixed clinical protocol an ongoing process—with a high level of cooperation by clinicians working and communicating with each from early intervention clinics around the world.

Who Seeks Early Psychosis Treatment and Why?

“Anywhere but here” is the refrain heard from the majority of teenagers who, if given a choice, would give serious thought to cutting off a finger before agreeing to see a “shrink.” Demian Rose in his role as medical director for PREP San Francisco offers an insight into how and why young people initially arrive at his clinic for care, explaining that most don’t come because they’re failing at school, or even because they’re hearing voices. These fleeting psychotic symptoms no doubt fuel their anxiety and depression, but most come for an evaluation, Rose says, “when they become socially isolated and emotionally distant from their peers.” Research confirms that mood fluctuations and stress trigger and exacerbate the recurrence of psychotic symptoms in those at risk.²⁷

The good news may be that since friendships and budding romantic feelings are such a priority to adolescents, when this area of their lives gets messed up, they have a greater motivation to get evaluated and treated. In the process, they may stave off the psychosis that could be laying in wait.

The Important Role of Psychotherapy in Pre-Psychosis Treatment

The therapeutic goal at PREP is to help the psychologically distressed individual (around ten to one are male) retrain and reframe his thoughts and behaviors toward more socially acceptable habits.²⁸ This is also the essence of the cognitive behavioral therapy (CBT) used with young people who are treated at PREP. This form of psychotherapy has been around for decades, but it has only recently been adapted by psychologists in the United Kingdom for the treatment of psychosis. (CBT in its original form is a widely used form of talk therapy to treat most other common mental disorders, including depression). As adapted for psychosis, CBT teaches an individual who becomes suspicious or paranoid to become consciously aware of a negative thought pattern that is about to escalate and then to learn how to “catch it, check it, change it.”

Imagine that a young man who is experiencing fleeting psychotic symptoms is sitting on a packed bus at rush hour. In his discomfort at the crowd pushing up against his knees, he might acquire the distinct feeling that the middle-aged woman standing a few feet away is staring at him, angry that he has a seat and she doesn’t. He may also fear that she’s scrunching up her nose because she believes he smells badly. He could go off even further on this paranoid tangent, becoming suspicious she will report him to the bus driver, who will request he get off at the next stop.

Before saying something inappropriate to the woman or getting up to leave the bus preemptively to avoid the feared outcome, CBT teaches this young man to stop and catch his wayward thought process. Checking to see if there’s any other viable explanation for the woman’s behaviors then reveals to him the more likely possibility that the woman simply has nowhere else to look but in his direction. Further, he realizes that there’s no concrete evidence to support the belief that she blames him for her situation or judges his appearance negatively—nor that she has any intention to speak to the bus driver about him. This reframing allows the young man to change his thoughts and to then relax his mind and body for the duration of the bus ride. It’s the CBT mantra in action: “Catch it, check it, change it.”

Demian Rose, Rachel Loewy, and their colleagues writing in Current Psychiatry use a continuum model to demonstrate how the human spectrum of thought and perception ranges from ordinary to heightened and then on to varying degrees of psychosis. They demonstrate how a clinician can respond to a young person’s unusual comments or behaviors without “pathologizing” his behavior and risk alienating him. This approach offers the client perspective and a choice. On one hand, he can continue expressing his unusual thoughts openly and risk alienating others. Or he can choose to keep these thoughts to himself and gain social acceptance. Rose points out that in the prepsychotic stage, this interactive discussion and decision-making process is much more viable.

This same advice can be useful to parents of an adolescent or a younger child whose altered behavior or speech might suggest that he is close to this outer edge of the continuum. Putting science aside, I remember as a parent watching Alex in this state, and it was terrifying. As he left “reality” behind, I felt him slipping away from me, too. But the alternative to pathologizing this behavior, Demian Rose points out, is normalizing it,which allows you to open up an honest conversation with your child (or another adult) about thoughts and feelings that may not fit our definition of normal but may in fact be very human. I didn’t have this insight to guide me at the time, but it made perfect sense when I heard Rose explain that this sort of conversation is the best way to find out what someone in this state is feeling and thinking, and what he really needs from you.

In addition to training their clients to use this thought-reframing drill, the PREP program also includes family members and caregivers in ongoing treatment. The model calls for bringing the clients’ parents and other family members together in a regularly meeting “multi-family group.” There they receive psychoeducational treatment, meaning they learn about psychosis and how they can help the affected person stay on track. Getting together with other families provides much-needed emotional support to parents faced with the often daunting task of providing care a troubled adolescent.

The Role of the Family

The man credited with developing this model is William McFarlane, a pioneer in early intervention for psychosis whose PIER Clinic (Portland Identification and Early Referral) was established in Maine in 2000. McFarlane’s studies show that ongoing support groups made up of several families meeting together significantly reduces relapse rates for the schizophrenic family member—when compared to not involving families in care or offering psychoeducational support to one family at a time. The PIER program was also the first to demonstrate that teachers, social workers, pediatricians, and therapists in a community could be trained to successfully identify psychotic symptoms in distressed young people and then intervene by referring them to PIER for an evaluation.

The Medication Issue

When an adolescent is diagnosed properly as “ultra-high risk,” he may be as little as a month or as long as one to two years away from developing full-blown schizophrenia—if he is going to convert at all.Demian Rose put the clinician’s dilemma succinctly: “The problem with the current diagnostic standard is that it ‘waits’ until it’s absolutely sure that dysfunction has been present for 6 months before confirming schizophrenia; so the message to parents and patients is all too often: ‘Let’s wait this out. You’re either going off a cliff. Or you’ll be okay. We’re not sure which.’ The real question should be how can clinicians reduce the risk of conversion while minimizing the risk and burden of any treatments.”

One guiding principle at PREP is to use as small a dose of antipsychotic medication as possible to keep the individual stable, and to err on the side of less is more.³¹ Convincing clinical data is accumulating on the positive outcomes coming from clinics using the approach practiced at PREP. Those who get treatment within the first six months to a year of the appearance of symptoms of psychosis show a much higher rate of remission and long-term recovery. If their symptoms convert to a diagnosis of full-blown schizophrenia (the usual diagnosis if they do) or bipolar disorder, their treatment is usually more effective, meaning their impairments are less, and their recovery is greater over the long term. But if they receive the same treatment from one to three years after psychosis has firmly taken hold, the rate of remission is lower, and the risk of side effects from long-term use of the medication goes up.³²

Now in its second year of operation, the PREP program has treated thirty young people, ages sixteen to thirty, with a mean age of twenty-two years. Twenty-one of these patients had already progressed to full-blown schizophrenia before coming to PREP, but they were recent-onset patients. Nine hadn’t yet reached that threshold, and so were considered ultra-high risk.³³ In the future, if the PREP-PIER model is permitted to become the standard for mental health care, we could reasonably expect this ratio to reverse; more young people could receive help before going “over the cliff” into a full psychotic episode, not after. Then their care could begin with CBT and be far less likely to progress to medication, at least not for a long period. The important thing is that they would learn the necessary self-regulating skills to stay safe.

In a professional journal, Thomas McGlashan, who led a clinical trial in early psychosis treatment at Yale and came out with what he saw then as disappointing results, nonetheless laid out the evidence for argument to treat young people for their symptoms of early psychosis as follows: (1) the patients are currently ill, (2) the patients are at high risk for getting worse, (3) no DSM-IV diagnosis accurately captures their current illness or future risk, (4) the diagnosis has been made with reliability and validity in the research setting, and (5) placement in DSM-5 would help promote the needed treatment and prevention research to enable articulation of a standard of care to benefit these patients and their families. He closed by pointing out that any potential harms can be minimized by patient, family, and provider education.

To my ears, this debate comes down to the question of who has the right to decide when an individual and a family have suffered enough. By continuing this now very public, fever-pitch argument over the difficult choice of whether to give a child or teenager a psychiatric medication, I think we’ve lost sight of what’s really at stake here. As Doctors McGlashan, McGorry, and Rose make clear, these young people are already very ill when they come seeking help. My sense of urgency comes from having watched my son Alex’s two painful years of decline until he became a shadow of his former self. And having the joy of watching him climb out of that state after three years on medication and in intensive CBT therapy. No young person should have to stay in that state any longer than necessary.

I think many of the dire predictions of those opposed to recognizing attenuated psychosis as a diagnosable and treatable syndrome — those fearing its over diagnosis and the over medication of young peple — should in fact be accepted as valid cautionary messages for their professions — not as a reason to deny people care who desperately need it.

The lack of a recognized diagnosis for early psychosis in the DSM-5 will not stop parents and their affected adolescents from seeking and getting help for those symptoms. It will just keep the process of getting help expensive and difficult and limited the number who can be helped in time to stave off the possibility of developing a full blown disorder.

In other words, it will stay par for the course for American medicine. But that doesn’t mean parents and advocates shouldn’t continue the campaign to educate and lobby for change.

For comprehensive NEWS on early treatment of schizophrenia and a list of hospitals and clinics treating early psychosis in the US and around the world visit the website http://www.schizophrenia.com

For more information on the PREP Clinic.

[Some of this article is drawn from my book, A Lethal Inheritance, A Mother Uncovers the Science Behind Three Generations of Mental Illness.]

PTSD in Children: How to Recognize the Symptoms, Understand the Neuroscience and Get the Right Treatment

What works in treating childhood PTSD? Shaili Jain MD, a VA psychiatrist, interviews Stanford researcher Dr. Victor Carrion who’s doing cutting edge work on this little understood children’s mental disorder. She gets some promising and somewhat surprising answers from Carrion on such key questions as how to spot childhood PTSD, what happens in the child’s brain during and after the trauma, and the best evidence based treatments for different ages and stages of the disorder — including the important role of the community! Another interesting aspect Jain and Carrion discuss is which disorders typically co-occur with childhood PTSD, for example,  commonly, ADHD.

I’ve republished the entire blog post here. Thanks to Shaili for the great work she’s doing with vets at the Menlo Park VA, and as a PLOS blogger….

Dealing with Psychological Trauma in Children: Answers from Neuroscience, Community Initiatives, and Clinical Trials for Treating Childhood PTSD

By Shaili Jain, MD
Posted: April 1, 2013

Photo by colemama via Flickr

“Susie Ehrens spoke of her daughter who escaped from Sandy Hook with a group of other first graders when the shooter paused.  Her daughter, she said, saw her friends and teacher slaughtered before she ran past lifeless bodies and a half a mile down the road” 

On December 14^th, 2012 the unthinkable happened. A gunman fatally shot twenty children and six adult staff members in a mass murder at Sandy Hook Elementary School in the village of Sandy Hook in Newtown, Connecticut.  This incident is the second deadliest school shooting in American History.

Tragically millions of children, all around the world, are frequently exposed to all manner of traumatic experiences.  From those of human design such as bearing witness to shootings, inner city violence or the effects of living in a war zone or being the victims of child abuse to enduring the consequences of exposure to natural disasters such as a hurricanes, earthquakes or natural fires.So what is the impact of psychological trauma on children?

To understand more, I recently met with Dr. Victor Carrion, a Professor at the Stanford University School of Medicine and Director of the Stanford Early Life Stress Research Program at the Lucille Packard Children’s Hospital at Stanford.  Dr Carrion’s research focuses on the interplay between brain development and stress vulnerability.  He has developed treatments that focus on individual and community based interventions for stress related conditions in children and adolescents that experience traumatic stress.

SJ: If we consider the example of a child, of elementary school age, who is exposed to a horrific traumatic event such as Newtown what, as a child psychiatrist, would you expect to see over the coming days and weeks i.e. what would be a normal and expected reaction to such an event in an elementary school child?

VC: The school-aged kid is going to have a difficult time understanding his/her emotional life. So, they may somatise e.g. complain of headaches and stomach aches and they are going to want to not go to school. They may not be psychologically minded enough to verbalize what they are struggling with. Kids sometimes do not have the vocabulary to talk about a traumatic event and sometimes they are still very concrete in their thinking.

 Also remember, because of media, even if we are not right where a trauma happened we can still be equally affected.  An example would be 9/11, where kids in California were following, minute by minute, everything that was happening in the news and when they started showing those pictures of people jumping from the towers that was traumatic for many kids. Our association, the AACAP (American Academy of Child & Adolescent Psychiatry), actually contacted the networks and they were very responsive and stopped showing those images as soon as we contacted them.

SJ: In your opinion, how best should parents, teachers and caregivers respond to such normal reactions?

VC: It will be important to really encourage discussion after something traumatic happened but not force it. Certainly, not even encourage it in very young kids that may not even know that something happened. Our belief now is that if the kid is 4 and 5 and this is not being discussed at school and they are not watching the news and they do not know that something terrible happened, there is no reason to talk to them about it.

 Obviously, if they directly witnessed or experienced something, that is a different story because, as you know, exposure to trauma is one of the strongest predictors of PTSD.

It is important is for caregivers to give children a message of safety and get the message that they are being taking care of and that they will be protected and that nothing will happen to their caregivers. This message of safety is important.

Another piece of this is that children should not be expected to be tough. One of the things that parents can actually model is that it is okay to cry, it is okay to have distress but parents have to be careful in how they balance that with maintaining their safety message and their authority message. They still have to give the message that I am okay enough to take care of you in a good way. But children certainly should be encouraged to express whatever feelings they may have about something that has occurred

Most children, exposed to trauma, are going to have a normal response and be okay with time. With a very small group of these kids, the response is going to continue and is going to become maladaptive and they need extra help. One of the things that is important for caregivers to recognize is when a child’s response becomes maladaptive, chronic or continuous. In that event, they should seek out professional help.

SJ: Let’s consider the more unfortunate scenario, that this child starts to develop signs/symptoms of a prolonged reaction to the trauma/an abnormal reaction: What are the typical manifestations of PTSD (posttraumatic stress disorder) in children of this age?

VC: Kids tend to show their re-experience of trauma through intrusive thoughts. This means thinking or talking about the trauma when they do not want to. So, they are playing basketball with friends and, all of a sudden, the images of the trauma do not let them enjoy the game or even play it. Or, they are doing their homework but they cannot because they are thinking about the traumatic event. Or they re-experience their trauma through what we call traumatic play. Traumatic play is a way for many children to communicate their experience especially if they are not that verbal.

Then there is avoidance. But with kids is it really avoiding or is it that the kid does not have the words to talk about what happened? There might be a cognitive inability to really talk about what happened but certainly we also see an avoidance of trauma related triggers. For example, if something traumatic happened and it was a rainy day then the next rainy day they may be particularly sensitive or nervous that day.  

We see emotional numbing quite often also: kids say that they can no longer feel sad when something bad happens. They feel happy when something good happens but not as good as they used to feel. They may go to a birthday and it is okay but they used to love birthdays before.

The other type of symptom is the physiological hyperarousability. That is what leads many kids to receive a misdiagnosis (especially kids that live in environments where they are surrounded by violence) of ADHD. Now, this gets very complicated, clinically, because kids that truly have ADHD are at increased risk of experiencing traumatic events. For example, they may not see the car coming and they go and cross the street. The kid that has ADHD is at increased risk of experiencing traumatic events which means they may end up with PTSD also.

Then, another thing as I said is that traumas are stressors to the system and you develop whatever you are vulnerable to. It may be that you do not develop PTSD but you develop OCD/a phobia as a consequence of experiencing a traumatic event.

We have always known that having anxiety puts you at risk for developing PTSD but what we have also seen in our data is that developing PTSD is a good predictor of developing other anxiety disorders after having PTSD. 

What we also see is that children tend to be egocentric and naturally narcissistic. In kids it is a helpful drive because they get the necessary attention and all that but that also means that if something bad happens, children take excessive responsibility for it and it creates this sense of guilt and guilt is a very good predictor of developing PTSD. This is not survivor’s guilt. This is guilt over an act. For example, “there was a fire and I could have prevented it and I did not”.” I was abused and that is because I provoked it or I made it happen”. Whenever there is that sense of guilt after a kid experiences a traumatic experience it is good to start some clinical remediation to correct those cognitive distortions.

SJ: How does this differ from PTSD in adults?

VC: Immediately, when we look at the first criterion for diagnosing PTSD, we already have an issue when it comes to kids. Criterion A requires that the traumatic event make you feel as though your life is in danger/threatened. But if you are younger than 7 or 8, you may not understand death as something that is universal and something that is irreversible.

One of the studies that we did is that we looked at children who had experienced separation or loss and were in that age group and compared them with kids that had experienced physical abuse, sexual abuse, and also had functional impairment. They really did not differ in terms of the amount of functional impairment that they had in their lives, in their personal relationships, and the amount of distress and so forth. So for children younger than 8, what I am saying is that separation or loss is considered a traumatic event. even if they might not have a full understanding of death or loss.

The symptoms of PTSD, in children as well as in adults, are mostly on and off. They are not there all the time and they tend to be triggered by cues. When those cues or triggers are there, that is when you see the symptoms. This becomes problematic if you are conducting a trial and at the end of the trial this group looks like it is doing well, it may be the case that the treatment worked but it might also be the case that there were no triggers/cues around those kids at that time. That is one of the reasons why we need to know about the neurofunctionality or the neuroscience of how traumatic stress impacts development.

For kids it is still a balance between internal and external resources, and it is like a mathematical equation.  So you may have a lot of coping and strength and that may be able to help you overcome the lack of support you have in your life or you may have total perfect support but you have so many risk factors to begin with like a previous history of trauma exposure or family history of anxiety disorder that you are more likely to have a post traumatic reaction. I am calling it a post traumatic reaction not necessarily PTSD because some of the work that we have done and also work done by Dr. Michael Scheeringa at Tulane University shows that children do not have to have all the criteria for PTSD listed in the DSM to experience functional impairment. For example, we showed that kids that have PTSD compared to kids that have a history of trauma and symptoms in 2 of the clusters are equally impaired. We still have work to do in terms of how we develop this diagnostic criterion for children. That is one of the things that Michael has done. He has proposed a number of criteria that has less symptoms and also that some symptoms might be somewhat different in children compared to adults

SJ: In terms of the neuroscience of PTSD, how might this look in terms of impact on child development from a psychophysiological, neuroimaging or neuroendocrinological point of view?

VC: One of the things that have been studied for a long time is the autonomic nervous system in children as well as in adults. It seems that those who have PTSD are actually a heterogeneous group and that physiology may help us differentiate between kids that dissociate versus all the kids that might display symptoms of aggression. For example, the kids that dissociate seem to have a lower heart rate when narrating a stressful event or a stressful story. Whereas, those that do not dissociate seem to have increased heart rate but increased heart rate does not seem to be a good marker because it depends where your baseline is. What seems to be a good marker is how long is the latency? i.e. how long it takes you to return to your baseline heart rate after a stressor. So, if the stressor increases your heart rate, kids that are vulnerable or have PTSD will take longer in coming back to a baseline heart rate.

 We concentrated on looking at cortisol and identifying what would be a good cortisol marker for this kids. What we find is that these kids have the normal circadian rhythmicity that you would expect (i.e. higher at the beginning of the day and going down at the end of the day) but then at the end of the day it seems to be elevated so these kids have high levels of cortisol. That is what we found about 10 years ago but what we found out years later is that that variable of” time since trauma” is very important. 

What we did is we looked at a big sample of kids and we looked at those that had had trauma during the past year and those that had trauma prior to that year. We hypothesized that our theory of increased cortisol was going to hold true for the kids that had it in the past year but not for the others. What we actually found was exactly that and we found 2 reverse correlations where if you had events in the past year, the higher your cortisol, the higher your symptoms of PTSD. Whereas, for the other individuals that had experienced trauma from a long time ago and were still with symptoms of PTSD, the more symptoms, the lower the level of cortisol.

But in general, I would say, that high pre-bedtime (before you go to bed) cortisol in kids, I am starting to think of that as a marker of pediatric PTSD.

Now, if you have these high levels of cortisol, the next normal question was to see what is going on in the brain because of the potential neurotoxicity of cortisol at high levels every day, right? So, we looked at kids who were experiencing chronic trauma i.e. physical abuse, sexual abuse and witnessing a lot of violence.

Cross sectionally there were no significant findings. But in 2007, we followed 15 kids for 1-1 ½ years and we saw that there was a correlation between high cortisol, (pre bedtime) cortisol, and decreased volume from time1 to time 2 of the hippocampus. 

Of course, the hippocampus is important for memory storage and retrieval so we did a task in functional MRI, a verbal declarative memory task, to look at encoding and retrieval in kids. We saw that in the control/healthy group, with no history of trauma and no PTSD symptoms, was activating significantly more hippocampus than the PTSD kids were. So we were not seeing the volume differences but, functionally, you can see that the hippocampus really does not work as well in kids with PTSD. 

We then decided to look at emotional regulation. We did the faces task and saw that kids that have PTSD activate their amygdala significantly earlier when viewing an angry face. When viewing a fearful face, there was a trend for their pre-frontal cortex to not be as activated as it was in the healthy controls. But the interesting thing about the amygdala activation is that, potentially, what we are talking about is a neuro functional marker of hyperarousability for these kids who have a history of exposure to interpersonal violence. For these kids, the face of someone angry is a cue/trigger and we here see the amygdala getting activated. 

So then, we started thinking that treatments that treat these kids better pay attention to emotional regulation, memory processing, and executive function. The other thing we realized is  that we could increase the empirical validity of some treatment interventions by demonstrating that they can lower cortisol or decrease amygdala function on this task and so forth.

SJ: What are the most common misperceptions/misunderstandings regarding the impact of traumatic stress on child development?

VC: There used to be this idea that children were resilient just by virtue of being children but there is no literature to really back that up. In fact, we know the opposite. We know that you are more vulnerable when you are younger, when you do not have defensive styles, when your brain is still developing, when your physiology is still developing. It affects you more.

SJ: What are effective treatments for children with PTSD? (psychological therapies and pharmacotherapies)

VC: Trauma focus cognitive behavioral therapy is the treatment of choice.  It is a treatment that was developed to treat children who have experienced sexual abuse but it has now been adapted to be used in different settings including for children who have witnessed  domestic violence.

One of the things that Judith Cohen (the developer of trauma focused CBT) and I are talking about is the need to develop algorithms for treatment.  So, the age of the kids, the type of trauma and duration of the trauma would determine which specific treatment a child would get.

But certainly, the first line of intervention for children that have PTSD is psychosocial interventions and it is not medication. Now, do I use medication? Yes. I use medication in 2 scenarios. One, when there is comorbidity and the comorbidity in PTSD is high, it is 80%. So if the child has major depression, in addition to the PTSD, I would want to treat that. That is one scenario. The other scenario is when the severity is so high that this individual may have difficulties engaging in their psychosocial treatment.

But the reality is that we have no pharmacological agent that would target all the neurotransmitter systems that traumatic stress impacts.

We actually developed a manual to treat kids called the Cue-Centred Treatment Protocol.  The whole idea here is that it is a hybrid. It has different components that we know help kids, it has: CBT, exposure and psycho education and insight orientated therapy. But the main thing that it does is that it empowers children to be their own agent of change. It is not so much about processing a narrative as teaching you how important a narrative is because the chances that these kids will continue to have traumas after we finish treatment is still pretty high and we want these kids to be equipped in knowing what to do.

 We did a randomized controlled trial in East Palo Alto and Hunters Point in Bayview at some schools there and the treatment has shown efficacy to decrease PTSD symptoms and anxiety symptoms when compared to kids put on a wait list.

There are some family interventions too. One is called parent-child psychotherapy. This is worked by Alicia Lieberman at UCSF 

 where she helps children age zero to 5. It gives treatment to both the parent and the child, it is more about their dyad, their relationship and that has also been shown to be effective.

SJ: What are the factors that determine how children, with PTSD, will respond to treatment?

VC:       With children, there are 3 factors that we think are very important to the outcome of the psychosocial intervention: Intelligence, motivation, and psychological mindedness. If a child is motivated and they can talk about feelings and they are smart, then the treatments will likely work. For some special populations, like children with mental retardation that get traumatized or children in the juvenile justice system we still need more effective treatments.

SJ: What types of preventative interventions/public health measures do you think are key to reducing the amount of violence children in our society are exposed too?

VC:       One of the things that I have done for the past 3 years is that I have been part of this coalition in San Francisco where we have built an ecological approach to the problem of trauma. Rather than just concentrating on models or treatments for the individual, we think of the whole system. We think about their school, we think about their family and how can we, in one place, do preventive work or treatment.  We have developed this Centre for Youth Wellness (CYW) which is a place that integrates paediatric care with mental health. So, every time they come for their paediatric checks, they get additional screenings for trauma. In that way, we know very early if they had traumatic events or not and then we start working with them, but not only with them, with their families and with the primary care team that is taking care of them in the same place.

 The CYW is also co-located with the CAC i.e. the Child Advocacy Centre. The CAC is the place that, when something traumatic happens, the child will come here get their forensic evaluations and physical exams etc. So, if that family shows up with kids to the CAC, the other siblings can be enrolled right away in the Centre for Youth Wellness. So, we are concentrating a lot on prevention, on interdisciplinary work and concentrating on developing new treatment methods that are empirically validated.

At Ravenswood Family Health Centre, here in East Palo Alto, we have thismodel where we have a behavioral health worker working with the pediatricians.  We looked at referrals and found that when we did a “warm hand off” (between psychiatry and the behavioural health person) there was significantly more follow through and less no shows for treatment.

SJ: What do you envision will be key obstacles to progression in this field?  Or what are the major controversies in this field that need to be resolved?

VC:       The way that ground mechanisms work in terms of funding for 3 or 5 years or maybe even less than that.  This makes follow up research very difficult. We need longitudinal studies to advance our knowledge of what goes on in PTSD.

SJ: What do you envision will be key advances in the treatment/understanding/prevention of traumatic stress in children in the next 10-20 years?

VC: I think working with mathematicians will advance our field, because I think that mathematical formulas are going to help us understand how these variables interact with each other e.g. like genetics and severity of the traumatic event.

I get excited about treatment interventions that can demonstrate that they can actually alter the physiology of someone who struggles with PTSD.

I am excited to know more about how stressors and traumatic events impact the physical health of the individual, for example, through atherosclerosis or pro-inflammation and things like that.  This will inform not only our psychiatric practice but I think medicine in general and the role of environment in medicine.

Article on Mind the Brain blog, PLOS.

http://plos.io/128GaT6

A List Far Too Long, from Boston Globe

This post made my heart ache — remembering what it was like trying to find the right therapists for my sons — and then figuring out how to pay for their care. Truly, as the author points out, parity for … Continue reading →

What I Wish I Could Have Said to Nancy Lanza and How We Can Prevent Another Tragedy

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On day five of what has for so many of us become a waking nightmare, it is increasingly apparent that the Sandy Hook Elementary School tragedy has ripped open a deep wound in the American heart — particularly for parents … Continue reading →

The real youth suicide story… from Kaitlin Bell Barnett

Youth Suicide and Medications – What’s the Link? By Kaitlin Bell Barnett To recognize World Suicide Prevention Day, I wanted to post again about the topic of medications, suicide and young people. First, the sad statistics: Worldwide, suicide is the … Continue reading →

Children Affected by War, New Psychological Intervention Program Shows Promise – Medical Daily

This dramatic improvement for traumatized youth in one of the worst places for children on the planet, Congo, is testimony to the power of psychotherapy to help someone heal from abuse and neglect. I can’t tell you how much this cheers me to read. Think about what it might mean for trauma exposed children here in the U.S. and everywhere to receive such concerted mental health care.

“This is the first time that such a therapy has been used in this way. Although Trauma-Focused Cognitive Behavior Therapy has the greatest evidence for its effectiveness in treating child victims of sexual violence in the West, to date no study has ever adapted it for use in developing countries affected by the twin evils of war and sexual violence,” O’Callaghan said.

The research team along with Congolese counselors encouraged girls to draw out pictures of their most traumatic events. The sessions also included relaxation techniques, mental imagery techniques and tips to cope with bad memories.

“The dramatic reduction in trauma, depression and anxiety, conduct problems and anti-social behavior shows that this kind of therapy is very effective in treating war-affected children who have been exposed to rape and sexual violence. In addition to the statistical results of the therapy many of the girls attested to how the intervention helped reduced their terrible nightmares, disturbing flashbacks and suicidal thinking. For me, that was the most rewarding part of our work in the DRC,” O’Callaghan said.

The research team also helped 50 boys reduce stress and anti-social behavior by psychological intervention program.

Researchers from Queen’s University Belfast and an NGO World Vision were behind this intervention method.

via Children Affected by War, New Psychological Intervention Program Shows Promise – Medical Daily.

Happy Mother’s Day! The Rewards of ‘Recovery Parenting’

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One totally unexpected reward of this way of life I’ve named ‘recovery parenting’ came to me a few weeks ago while having lunch with my youngest son “Sammy” and his girlfriend of three years, a lovely girl I’ll call “Lori.” … Continue reading →

Researcher: Blood test for early-onset depression promising – – CNN.com Blogs

The importance of this new research speaks for itself!

Redei’s research team discovered eleven blood biomarkers for early-onset major depression. Their original work used rats, and they confirmed their results in this small study of humans that included 14 teens with major depressive disorder, and 14 teens without depression. The researchers discovered that they could distinguish between major depression with anxiety and without anxiety, based upon the genetic markers.

“Having an objective test that tells a physician there is a physical, genetic explanation for depression” allows them to treat patients with a precise diagnosis, Redei explains. “Knowing there is an objective reason for their child’s feelings can allow parents and children to understand that depression is an illness, it’s a complicated illness, that is very common, and can be treated.”

via Researcher: Blood test for early-onset depression promising – – CNN.com Blogs.

Childhood Maltreatment and Schizophrenia Risk: A Review of the Studies

One of the (two) main primary environmental risk factors that raise a genetically vulnerable teenager’s risk for developing schizophrenia (in addition to cannabis use) is the experience of childhood sexual or physical abuse.  A new meta-study looked at 27,000 previous … Continue reading →