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Empowering Parents to Support Adolescent Eating Disorder Recovery

I am honored to be spotlighted by LEAD, inc as a mental health advocate.  LEAD is a nonprofit mental health advocacy organization founded in 2012 by a group of high school students.   LEAD offers innovative, engaging, evidence-based programs which improve early intervention for mental illness.

As a clinical psychologist treating children, adolescents, and young adults, I am a strong proponent of early, aggressive, evidence-based interventions for young people who are struggling with mental illnesses.  My personal and professional values align closely with those of LEAD, so I was thrilled when LEAD asked me to publish a VIP guest post for their blog!  My post went live yesterday.  This piece describes a topic about which I am passionate: Empowering Parents to Support Adolescent Eating Disorder Recovery. 

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Updated Summary of Treatment Outcomes

Since opening my private practice in 2009, I have been privileged to work with over 300 individuals and families, providing consultation, evaluations, and treatment for a variety of mental health conditions.  I believe in being transparent and straightforward about the services I provide and why I provide them.  Individuals who are seeking mental health services for themselves or for their children have a right to know what treatment with a particular provider will actually be like, how long it will last, what outcomes they can expect, and what factors contribute to a more or less favorable outcome.

To this end, I collect detailed information on my patients’ treatment outcomes and publish the results on my blog.  Here is an updated summary of treatment outcomes for the disorders I most commonly treat.  For more detailed information on the types of treatment provided and treatment outcomes in my practice for each of these disorders, click on the category heading.

Treatment Outcomes for Anorexia Nervosa

  • 50% of patients who entered treatment with me completed a full course of treatment with me. 26% dropped out of treatment prematurely.  22% were referred to other providers who could better meet their needs.  3% moved to other geographic locations during treatment.
  • 97% of patients who completed treatment achieved full remission. The remaining 3% achieved physical remission.
  • The majority of patients who completed treatment did so in a time frame of somewhere between 7 months and 2 years.
  • A full course of treatment required, on average, 27 sessions over the course of 17 months.
  • Patients with co-morbid conditions, such as anxiety disorders or depression, required more sessions, on average, than those without co-morbid conditions.
  • All patients who completed treatment achieved 100% full weight restoration, as indicated by a return to their pre-AN percentile patterns of growth for height and weight.
  • Average time to achieve weight restoration was 3.6 months.
  • Patients who recovered with individual therapy took longer, on average, to achieve weight restoration than those who recovered through Family-Based Treatment (FBT).
  • Patients receiving FBT were almost twice as likely to recover as those receiving individual therapy.
  • Patients receiving individual therapy were almost twice as likely as those receiving FBT to drop out of treatment prematurely.
  • Individuals with restrictive Anorexia Nervosa were twice as likely to achieve full remission as those with binge-purge Anorexia Nervosa.
  • For treatment drop-outs, there was a significant correlation between length of time spent in treatment and progress made. All treatment dropouts who were in treatment with me for at least 2 months had made significant progress towards treatment goals at the time of drop-out.  Patients who dropped out of treatment after one month or less had not made any progress at the time of drop-out.

 

Treatment Outcomes for Bulimia Nervosa

  • Over half of patients with bulimia nervosa (54%) discontinued treatment prematurely after making significant progress towards treatment goals, but prior to achieving full remission.  15% percent of patients were referred to other treatment providers or types of treatment that could better meet their needs, after making little or no progress in treatment with me. 8% of patients moved to other geographic locations and were thus referred to providers near their new homes.  23% of patients completed a full course of treatment with me.
  • Of those who completed a full course of treatment, 100% achieved full remission from their eating disorder.
  • A full course of treatment required, on average, 13 sessions over the course of 5 months.
  • Patients who took Prozac during treatment were more likely to achieve full remission than those who did not take medication.
  • Patients with a prior history of Anorexia Nervosa were less likely to recover from Bulimia than those who did not have a prior history of Anorexia Nervosa.
  • The presence of a comorbid diagnosis was not related to likelihood of achieving full remission from Bulimia.
  • Level of family involvement in treatment was not related to the likelihood of achieving full remission. This finding is in stark contrast to my outcomes for Anorexia Nervosa, in which family involvement was strongly correlated with positive treatment outcome.

Treatment Outcomes for Mood Disorders

  • Only 18% of patients who presented with a primary diagnosis of a mood disorder completed a full course of treatment with me. 50% discontinued treatment prematurely for unknown reasons, 15% moved to other geographic locations, and 18% were referred to other providers who could better meet their needs.
  • Of those who completed a full course of treatment with me, 83% achieved full remission from their mood disorder and the remaining 17% made significant progress towards their treatment goals.
  • Length of time to complete treatment varied dramatically (from 1 month to 3 years) based on individual needs, symptom severity, and progress. On average, a full course of treatment required 23 sessions over the course of 16 months.
  • High levels of family involvement predicted treatment completion and full recovery for adolescent patients but not for adult patients.
  • Patients who were self-referred were more likely to complete treatment and achieve full remission than those who were referred by another professional.
  • Predictors of less favorable treatment outcomes included hospitalization during treatment and taking psychotropic medication during treatment, most likely because these variables are markers for more severe forms of mental illness.
  • The following variables did NOT predict treatment outcome: age at intake, gender, ethnicity, duration of illness, diagnosis (type of mood disorder), presence of co-morbid diagnoses, rate paid for services, type of treatment received with me, or history of hospitalization prior to starting treatment.

Treatment Outcomes for Anxiety Disorders

  • Half of patients who entered treatment for anxiety disorders completed a full course of treatment with me.
  • Of those who completed a full course of treatment, 88% achieved full recovery and the remaining 12% made significant progress towards their treatment goals.
  • Length of time required to complete a full course of treatment varied dramatically from 1 month to 19 months, with a median treatment duration of 3 months.
  • Of those who discontinued treatment prematurely, 63% had made significant progress towards their treatment goals as of their final session with me, and the remaining 37% had made some progress.
  • Predictors of positive treatment outcome included high levels of family involvement in treatment, younger age at intake, shorter duration of illness, being self-referred to my practice, paying full rate for services, and having good attendance at therapy sessions.
  • Predictors of less favorable treatment outcome included presence of a comorbid diagnosis, taking psychotropic medication during treatment with me, and being referred to my practice by a psychiatrist.

General Conclusions

  • Across diagnostic categories, less than half of patients who enter treatment with me complete a full course of treatment with me.
  • I tend to set the bar high for my patients, striving to engage them and help them continue to progress until they reach full remission.
  • Many individuals and families decide to discontinue treatment after making significant progress towards treatment goals, but prior to achieving full remission.
  • I hope that those who discontinue treatment after making significant progress, but prior to achieving full remission, continue to move forward and eventually achieve full remission with the support of their families and/or with other professional supports.  My primary goal in working with families is to empower the parents to help their child.  My goal is to become obsolete for that particular family.   For this reason, when a family reaches a point where the parents are confident that “We’ve got it from here!” and my involvement is no longer necessary, then I have done my job well.    Therefore, dropping out of treatment prematurely, after making significant progress in treatment, may not necessarily be a negative thing.
  • Across all diagnostic categories, patients who complete a full course of treatment with me do very well in recovery. The vast majority achieve full remission from their illness.

 

 

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End of Treatment Outcomes for Patients with Anorexia Nervosa (2009 – 2017)

Description of the Sample

This analysis includes all patients with a primary diagnosis of Anorexia Nervosa (AN) who participated in an evaluation followed by a minimum of one therapy session with me between the start of my practice in 2009 and spring 2017.  Given that this is an analysis of end of treatment outcomes, patients who are currently in treatment with me were not included in this sample.  Patients and families whom I saw only for evaluations or consultations rather than treatment were not included in this sample.

The sample includes 60 individuals (93% female) who ranged in age from 10 – 37 years old, with a median age of 16 and a modal age of 13.  The majority of patients identified as Caucasian (69%) or Hispanic (29%), with less than 3% identifying with other racial/ethnic groups.

Twenty percent of patients in this sample met criteria for the Binge-Purge Subtype of AN, while the remaining 80% had Restricting Subtype.

Half of patients in this sample had a comorbid diagnosis.  The two most common comorbid diagnosis were  ADHD and Major Depressive Disorder, with 13% of patients meeting criteria for each of these disorders.

Duration of illness before beginning treatment with me ranged from 2 months to 21 years, with older patients, on average, having been sick for a longer duration of time.  The mean duration of illness before entering treatment with me was just under 3 years.

Most patients had a history of unsuccessful outpatient treatment with other providers prior to beginning treatment with me.  In addition, 28% percent of patients had a history of hospitalization for AN prior to beginning treatment with me and 15% had a history of residential treatment.

Ten percent of the sample paid a reduced rate for services due to financial need.

What follows is a summary of treatment outcomes.  For a more detailed description of treatment outcomes for patients with AN, click here.

Description of Treatment Received

  • 95% of child and adolescent patients received Family-Based Treatment (FBT).  The remaining 5% received individual therapy.
  • 40% of patients over age 18 received FBT, either alone or in conjunction with individual therapy. The remaining 60% received individual therapy.
  • Some adolescent FBT patients received individual therapy for a co-morbid condition after their course of FBT was complete.
  • All patients received medical monitoring by their physician during treatment with me.
  • 58% of patients took psychotropic medication at some point during their treatment with me.
  • Average number of sessions attended was 23.
  • Average duration of treatment was 13 months.

Reasons for Treatment Ending

  • 50% of patients completed a full course of treatment with me
  • 26% dropped out of treatment prematurely
  • 22% were referred to other providers
  • 3% moved to other geographic locations during treatment

Treatment Completion

  • 97% of patients who completed treatment achieved full recovery. The remaining 3% achieved physical remission.
  • The majority of patients who completed treatment did so in a time frame of somewhere between 7 months and 2 years.
  • A full course of treatment required, on average, 27 sessions over the course of 17 months.
  • Patients with co-morbid conditions required more sessions, on average, than those without co-morbid conditions.

Weight restoration

  • All patients who completed treatment achieved 100% full weight restoration, as indicated by a return to their pre-AN percentile patterns of growth for height and weight.
  • Average time to achieve weight restoration was 3.6 months.
  • Patients who recovered with individual therapy took longer, on average, to achieve weight restoration than those who recovered through FBT.

Treatment Dropout

  • 26% of patients dropped out of treatment prematurely.
  • Patients receiving individual therapy were almost twice as likely as those receiving FBT to drop out of treatment prematurely.
  • For treatment drop-outs, there was a significant correlation between length of time spent in treatment and progress made.
  • All treatment dropouts who were in treatment with me for at least 2 months had made significant progress at the time of drop-out.
  • Patients who dropped out of treatment after one month or less had not made any progress at the time of drop-out.

Status at End of Treatment with Me

Recovery status was assessed for each patient as of his/her final session with me, regardless of the reason for treatment ending.  The statistics listed below are for the entire sample of patients, including those who completed a full course of treatment, those who dropped out prematurely, and those who were referred to other providers due to a geographic move or a need for a different level of care or type of care.

  • 48% had achieved full recovery
  • 2% achieved physical remission
  • 22% made significant progress
  • 5% made some progress
  • 18% made no progress
  • 3% regressed

Predictors of Positive Treatment Outcome

  • Completion of a full course of treatment: 97% of those who completed treatment achieved full remission.
  • Younger age (Children under 13 had the highest rates of full recovery, followed by adolescents ages 13-17).
  • Patients receiving FBT were almost twice as likely as those receiving individual therapy to achieve full recovery.
  • Males were more likely to achieve full recovery than females.
  • Patients with Restricting Anorexia Nervosa were more than twice as likely as those with Binge-Purge Anorexia Nervosa to achieve full recovery.
  • Patients taking psychotropic medication during treatment were somewhat more likely to achieve full recovery than those who did not take psychotropic medication.
  • Patients who paid full rate for treatment were somewhat more likely to achieve full recovery than those who paid a reduced rate due to financial need.
  • Caucasian (non-Hispanic) patients were somewhat more likely than Hispanic patients to achieve full recovery.
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Parent-Focused Treatment: An Attractive Alternative to FBT

The results of a randomized clinical trial (RCT) comparing Parent-Focused Treatment (PFT) and Family-Based Treatment (FBT) for adolescent Anorexia Nervosa (AN) were published this month in the Journal of the American Academy of Child & Adolescent Psychiatry.  As a practitioner of FBT, and as a clinician who is always looking for ways to improve patient outcomes, I read this article with great interest.

Family-Based Treatment (FBT), when applied strictly according to the manual, entails a psychologist or other mental health professional meeting with the family as a whole – the adolescent patient, both parents, and siblings – in a single session.  In contrast, Parent-Focused Treatment (PFT) involves the psychologist meeting privately with the parents, while the patient’s weight, vitals, and mental status are monitored by a nurse.

While FBT and PFT therapy sessions are conducted in different formats, the essence of the treatment – which is implemented by parents in the home – is the same.  Both treatments empower parents to work together to increase their adolescent’s food intake, restore him or her to a healthy weight, interrupt eating disordered behaviors, re-establish normal eating patterns, and return him or her to a state of healthy adolescent development.

The results of this study demonstrated that PFT is more efficacious than FBT.  At the end of treatment, patients receiving PFT were twice as likely to be in remission from AN compared with patients receiving FBT.  In addition to being published in the Journal of the American Academy of Child & Adolescent Psychiatry, the article was summarized nicely by the Murdoch Children’s Research Institute.

As I was reading this article, it occurred to me that I have been utilizing a version of PFT with some families in my private practice for years, as I have adapted FBT to suit the needs of each individual family.   For example, it is not uncommon for an adolescent patient with AN to refuse to attend some or all of the family sessions during Phase I (the re-feeding and weight restoration phase).  Personally, I have not found this to be problematic.  After all, in an FBT model, the parents are the primary agents of change in early recovery from AN.   The patient is more of a passive recipient of care – his or her job is simply to show up at the table and eat.

In my experience, most parents make excellent use of the Phase I sessions to receive support, learn more about AN, brainstorm and problem-solve, and collaborate with their spouse in the re-feeding process.  All of these things can be done with or without the child present, so long as the child’s weight is monitored weekly.  The weekly weigh-ins can be completed at the pediatrician’s office or under parental supervision at home.

As another example, many patients are so anxious about eating high-calorie foods, gaining weight, and eliminating exercise that attending sessions –during which these topics are discussed at length – is just too overwhelming.  Increasing a patient’s anxiety can sometimes be counterproductive to treatment goals.  For instance, if the patient is present during discussions of “fortifying” foods (e.g., increasing the caloric density by adding cream, oil, butter, or Benecalorie) or discussions of weight goals, this may heighten her anxiety to the point that she cannot eat these fortified foods, or she may become even more resistant to gaining weight.    For an underweight patient with AN, talking and listening are over-rated.  Eating and gaining weight are essential.

In my experience, patients who do not attend sessions during Phase I tend to have just as much success in recovery as patients who attend every single session.  Furthermore, the vast majority of the time, the kids who refuse to attend sessions in Phase I will begin to attend sessions voluntarily after weight restoration occurs and their treatment progresses through Phase II and Phase III.  By that time, most patients have the cognitive and emotional capacity to participate in their own recovery process and have some interest in getting better.

On the other hand, there are some cases in which it makes more sense to have the patient attend all of the FBT sessions, cases in which her participation in the treatment enhances her success in recovery.  Often (though not always), these are cases in which the patient is older, more independent, less cognitively impaired, less anxious, more curious about the process, and/or has some degree of personal motivation to recover at the outset.

I have also found that it is also very important for the patient to attend all sessions in cases where the parents are less willing or less able to take full responsibility for their child’s recovery.   For instance, I’ve worked with families in FBT in which both parents have active addictions to drugs or alcohol, families in which another member is coping with a health crisis (e.g., a parent with a recent cancer diagnosis), families in which the parents are going through an acrimonious divorce, and large families with many young children.   These have been cases in which the parents, while supportive in theory, were unable to invest as much time and energy into their child’s recovery as other families.  The patients from these families, in my observation, tended to be more resilient and more autonomous than other teens, likely .as a result of growing up in challenging environments.  I have observed that the adolescents in these more challenging situations have been able to (or perhaps required to) take on a greater degree of independence earlier in the recovery process.

The outcomes of this clinical trial were disappointingly low for both forms of treatment.  At the end of treatment, only 43% of patients receiving PFT had achieved remission, and only 22% of patients receiving FBT achieved remission.   Before you become discouraged, however, please allow me to explain my theories as to why remission rates were so low.

First, I believe that the poor outcomes of this study were, at least in part, due to the fact that families were randomly assigned to one type of treatment or the other.   Of course, in conducting a controlled clinical trial to study the efficacy of treatments, it is necessary to use random assignment to control for confounding variables and increase the validity of the results.  I suspect that if families were able to choose between PFT and FBT based on their own needs, desires, circumstances, and knowledge of their child, the outcomes would have been significantly more promising.  This has certainly proven to be true in my practice.

Consider the “treatment refusers” I described above, with whom I have effectively used PFT essentially by default.  On the other hand, consider the teens who come from more challenging family environments, whose participation early in treatment is instrumental to their recovery.  If the families with “treatment refusers” were randomly assigned to Family-Based Treatment, or if families with other significant challenges were randomly assigned to Parent-Focused Treatment, I suspect that the patient would be much less likely to occur.

Second, the course of treatment in this study was 18 sessions over the course of 6 months.  This sounds woefully insufficient to me.  In my experience, some patients do achieve full remission within 6 months, but this is certainly not the norm.  In my practice, most patients with AN are fully weight-restored within 3 or 4 months, but full remission of cognitive, emotional, and behavioral symptoms generally takes 12-18 months of treatment.   It is not unusual for patients to require 2 or 3 years of treatment in order to attain full remission and become ready to manage their eating independently.

I point out these time frames because I do not want patients or their families to feel discouraged when recovery takes so much longer than they expected.  The patients in these clinical trials who did not achieve full remission at end of treatment are the NORM, not the exception, and this is not due to any failure on the part of the patient or the parents.  Rather, the research study itself places unrealistic expectations on individuals with AN and their families.   Any clinician who has treated many patients with AN could tell you that full remission after 6 months is simply unrealistic for a majority of AN sufferers.  Individuals who have gone through treatment for AN, and parents who have helped their children recover, know all too well that vestiges of AN are often present for many months after weight has been fully restored.

I am confident that the majority of adolescents with AN who are not in full remission after 6 months of treatment will go on to achieve full remission within two or three years, especially when they utilize evidence-based, family-centered care.

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World Eating Disorders Action Day

Today – June 2, 2016 – is the first annual World Eating Disorders Action Day.

In honor of this day, my esteemed colleague, Dr. Tarah Martos, and I hosted the first annual South Florida Parent Summit on Eating Disorders.  The summit provided a unique opportunity for parents of eating disorder sufferers to unite, empower one another, and learn from each other.   We spoke with the parents about envisioning recovery, relapse prevention, and a promising new treatment from Colombia University which involves habit reversal.   The lovely parents who attended the summit, despite having sons and daughters of different ages and with different presentations of illness, felt an instant connection with one another, and a freedom in discussing their experiences with other parents who really, truly get it.

I am proud that World Eating Disorders Action Day exists, and I am honored to be a part of it.   The public health messages surrounding this day have been devoted to increasing awareness that eating disorders are serious but treatable illnesses, caused by a complex interaction of genes and environment, which affect people of all ages, genders, socioeconomic statuses, and ethnic backgrounds.   These are messages I stand behind as a psychologist, as a writer, as an activist, and as a mother of a little girl whom I hope can come of age in a world where the content of these public service announcements is common knowledge.

 

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Iatrogenic Effects

The year is 1892. Emily, age 14, is the second of six children in a Midwestern farming family. One evening in March, Emily’s mother catches a glimpse of her daughter undressing and is taken aback by how slim she looks. Over the next few days, mother notices that Emily eats very little at family meals. She mostly just pushes her food around the plate and slips pieces of her food under the table to the family’s two dogs.

Later that week, Emily’s older sister, Cora, confides in her mother that Emily is no longer getting her monthly cycles. Now mother is greatly concerned, and she has a talk with her husband, who is equally worried. Both parents sit down with Emily and express their concern over her poor eating habits, weight loss, and absence of menstrual cycles. In response to her parents’ talk, Emily bursts into tears. “I just can’t eat,” she cries. “I just can’t.” Mother and father hug their daughter, comfort her, and let her know that they will be taking her to the family doctor the next morning.

When Dr. Benson examines Emily the following day, he is alarmed by his young patient’s gaunt appearance and flat affect. She is no longer the bubbly, robust young girl he has known since birth. Emily’s pulse is much lower than normal, her muscles have wasted, and her adolescent figure has shrunken to a pre-pubescent one.

“Emily is gravely ill and melancholy,” Dr. Benson tells the worried parents. “She is malnourished, and she will need lots of food and rest to recover. She needs complete bed rest for the next three months, plenty of food at each meal, and six tall glasses of milk per day. I will see her again next week.”

Emily cries heavily all the way home, burying her head in her mother’s skirt. As soon as the family gets back to their house, her mother prepares her a large plate of food with extra bread and butter and a tall glass of milk. Mother sits beside Emily and strokes her daughter’s hair as she stares – terrified – at the heaping plate of food. “You will not be doing any chores this spring,” her father tells her firmly. “Cora will do your indoor chores and Ethan will take over your outdoor chores. You will not be returning to school this year – the 2-mile walk is too strenuous for you in this condition. Cora will speak with your teachers and bring home your assignments. You will study from home. You will return to school and chores when you are well.”

“But Papa…” pleads Emily. “I have to –“

“That’s enough, young lady. You know better than to take that tone with me. This is final.” With that, Emily’s father abruptly leaves the room. Tears stream down Emily’s cheeks as she weeps silently. Mother strokes her back and whispers: “Come on, sweetie. Eat.” Hands shaking, Emily picks up her fork and takes a bite. Mother waits with her at the table for the next two hours as she finishes every last bite of food and every last drop of milk.

19th century family

Dr. Benson makes house calls weekly over the next few months. Emily is always lying on her bed, reading and sipping a glass of milk, when he arrives. He watches the young girl slowly put on weight, regain her strength and stamina, begin to smile again, and then blossom into the cheerful teenager she was meant to be. By the time June rolls around, Emily has resumed her monthly cycle and returned to her normal weight. At this point, Dr. Benson gives her permission to begin doing some light chores around the house.

By September, Emily is eating with gusto. She has had three monthly cycles in a row and has regained her curvy figure. She returns to school and resumes all of her farm chores. Her parents are relieved to have their daughter back.

The vignette above illustrates how Anorexia Nervosa (AN) would have been treated several generations ago. Quite a stark contrast from how AN is treated today, isn’t it? The illness itself has remained basically the same throughout time, but the way that people conceptualize it and respond to it has changed dramatically. Consider the following differences between Emily’s treatment in 1892 and the treatment Emily’s great-great-granddaughter Marissa received in modern times:

1.) Emily’s parents are immediately concerned by her weight loss and dwindling food intake. They view weight loss in a growing adolescent as a sign of illness and take her to the doctor immediately. Marissa’s parents are pleased when they notice her becoming slimmer shortly after her 14th birthday. They praise her for foregoing desserts and snack foods. They encourage her interest in athletics and bring her jogging with them in the morning.

2.) Emily’s family doctor is immediately concerned by his young patient’s weight loss, lack of menses, and changed demeanor. At her 15-year-check-up, Marissa’s pediatrician commends her on her 12-pound weight loss. When Marissa’s mother expresses concern to the pediatrician about her daughter’s low heart rate and absence of menses for the past three months, the doctor explains that it is common for female athletes to lose their monthly cycle, and that Marissa’s low heart rate is also due to being a runner.

3.) The prescribed treatment for Emily – full nutrition and complete bed rest – is commenced immediately and aggressively. Eating more food is not recommended, or even suggested, for Marissa. Marissa continues running with the blessing of her doctor and the encouragement of her coach.

4.) The doctor views Emily’s parents as competent agents to re-feed their starving daughter and enforce bed rest for a prolonged period of time. Marissa’s parents are advised to “stay out of the food business” and admonished not to be the “food police.”

5.) Dr. Benson monitors Emily’s condition weekly and supports the family throughout the recovery process. Emily’s menstrual periods return naturally as she restores a healthy weight. Marissa’s pediatrician does not see her again until she develops a stress fracture 5 months later. Marissa has now lost a total of 20 pounds, and her pediatrician gently suggests that she tries to eat a little more. The pediatrician also refers her to a gynecologist, who prescribes birth control pills to re-start her periods.

6.) Emily is expected to comply with the prescribed treatment, and parents are expected to enforce it. Marissa restricts her food intake even more. She is now eating nothing but fruit, vegetables, and chicken breast. Scared to make matters worse, her parents say nothing.

7.) Emily eats hearty meals with her family every day for breakfast, lunch, and dinner, plus plenty of whole milk in between. Unable to watch her daughter starve herself any longer, Marissa’s mother takes her to a local therapist who was recommended by a neighbor. This therapist begins meeting with Marissa weekly, and also refers them to a family therapist and a dietitian. Marissa is now attending multiple appointments each week and following a 1600-calorie exchange plan created by her dietitian. She prepares her own meals, weighing and measuring everything.

8.) The doctor recommends chamomile tea with honey to soothe Emily’s nerves. Neither Emily nor her parents are blamed for her AN. The etiology of the illness is not discussed with Emily or her family, as it is not known. Marissa’s weight does not change, but her mood deteriorates. The therapist refers Marissa to a psychiatrist, who prescribes Lexapro and Klonopin. The family therapist suggests that Marissa’s AN is a cry for attention, as her father works long hours at his law firm and her mother is very preoccupied caring for her younger son with autism.

9.) Emily’s weight was restored to her normal range within three months of commencing treatment. She remains home with her family throughout and maintains good physical and mental health for the rest of her teenage years. By her 16th birthday, Marissa has lost 4 more pounds (a total loss of 24 pounds in 2 years). Her therapist recommends residential treatment at a well-marketed eating disorder treatment center in another state. Marissa spends 3 months at this residential treatment center. The psychiatrist there prescribes two additional psychotropic medications. Within a month of returning home, Marissa relapses and returns to the center for another 3 months.

10.) Emily maintains good relationships with her parents and siblings. She trusts her family to help her when she needs them. By the time she turns 18, Marissa has had three psychiatric hospitalizations, four stays in residential eating disorder treatment, and is taking five different psychotropic medications in addition to Ambien for sleep and birth control pills to regulate periods. She barely speaks to her parents and refuses to sign consents to allow them to access her healthcare information.

Emily and Marissa developed the same illness at the same age but received very different treatments and thus had very different outcomes. Emily’s AN was completely resolved within 6 months, whereas Marissa remains gravely ill and in intensive treatment four years later. Marissa experienced the iatrogenic effects that are so prevalent in modern eating disorder treatment. Iatrogenic effects are harmful outcomes caused by a medical intervention. In other words, a treatment which is intended to help a patient ends up making her condition worse or creating a new problem that wasn’t there before.

Marissa’s story is all too common. The adults around her – with good intentions – inflicted harm by prolonging her state of semi-starvation, prioritizing her adolescent autonomy above her physical health, disempowering her parents, alienating her from her family, subjecting her to time-consuming, costly, and ineffective therapies, prescribing powerful psychotropic drugs that may not have been necessary, isolating her from her primary support system, and surrounding her with other mentally ill teenagers.

modern girl

Clearly, some teenagers with Anorexia Nervosa have complicated presentations with multiple comorbidities which require a team of professionals and specialized care. But there are also many cases in which a simple and straightforward intervention would be far more effective and efficient than the iatrogenic treatments that so many kids and families endure. This is precisely why Family-Based Treatment (FBT) is so effective: it minimizes the iatrogenic effects of other eating disorder treatments. Mainstream eating disorder treatment often morphs Emilys into Marissas.

What would have happened to Marissa if she had been provided with the same treatment as her great- great-grandmother Emily? Would she, too, have regained full health in a matter of six months, and bounced back into a vibrant adolescent life? It’s impossible to know for sure, but it seems likely that she could have. It’s definitely worth a try. Our 21st century Marissas need and deserve treatment that is AT LEAST as effective as 19th century Emilys.

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After Weight Restoration: What About Body Image?

Body image disturbance is one of the most insidious and painful symptoms of Anorexia Nervosa (AN). In many cases, body dissatisfaction is the last symptom to abate. However, the relationship between body image and recovery from Anorexia Nervosa (AN) is fairly complex. Many individuals with Anorexia Nervosa (AN) do not experience body image problems as a symptom of their illness. Most people with AN, however, do have some degree of body image disturbance which changes in intensity over the course of their illness and recovery.

A recent randomized controlled trial of adolescent AN treatment found that weight and shape concerns did not change significantly over the course of treatment. The authors of the study point out that, on the one hand, these results suggest that weight and shape concerns do not get worse over the course of treatment. This finding may come as a relief to patients who are terrified that they will hate their bodies if they gain weight. The authors conclude that “weight restoration alone is not sufficient to ameliorate the weight and shape concerns characteristic to AN.”

While the authors’ conclusion may be accurate in some cases, my clinical experience with AN patients as well as my knowledge of statistics leads me to a different conclusion. I have observed that the relationship between weight restoration and body image varies dramatically from person to person. When it comes to AN and body image, people tend to fall into one of the following categories:

1.) Those who do not have significant weight or shape concerns.

2.) Those who present for treatment with significant weight and shape concerns, which gradually abate over the course of weight restoration and may even disappear by the end of treatment.

3.) Those who become increasingly dissatisfied and distressed by their weight or shape as they restore weight.

My hypothesis is that the authors of the study found no significant change in body image over the course of treatment because patients in group 2 and group 3 essentially cancelled each other out, while those in group 1 did not impact the results in either direction.

As you can see from the groupings above, body image disturbance may not even be relevant for the patient (group 1), and if it is, weight restoration alone may be sufficient to improve body image (group 2). For this reason, I typically postpone addressing body image until after weight restoration has been accomplished and the patient has re-established normal eating patterns. By postponing body image work until the end of treatment, the patient and her family save a lot of time, money, and stress, as a substantial proportion of patients do not need it.

Individuals in group 3, however, may benefit from working on their body image in therapy. Helping these individuals improve their body image will be the topic of my next blog post.

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After Weight Restoration: The Role of Motivation

Motivation is the process that initiates, guides, and maintains goal-oriented behaviors. It involves the biological, emotional, social, and cognitive forces that activate behavior. Basically, motivation is what drives us to act.

In eating disorder circles, motivation generally refers to an inner drive to achieve or maintain recovery. Given that anosognosia is a primary symptom of Anorexia Nervosa (AN), most patients have little or no insight or motivation while they are ill. When a person does not perceive herself as ill, she will not be motivated to recover. When a person perceives himself as superior while undernourished, emaciated, and hyperactive, he will be highly motivated to maintain his AN.

Fortunately, motivation is not necessary to begin recovering from AN. In Family-Based Treatment (FBT), motivation is neither expected nor required of patients during Phase I (re-feeding and weight restoration). So long as the parents are highly motivated to return their child to good health (as most parents certainly are), patient motivation is unnecessary.

There are two types of motivation:

Extrinsic motivation is a drive to perform an activity to attain a particular outcome. Extrinsic motivations come from outside the individual. For example, a student is motivated to study in order to earn good grades and gain admission to an elite college.

Intrinsic motivation is an inner drive to perform an activity for personal reasons, based on interest or enjoyment of the task itself. Intrinsic motivation exists even in the absence of external reward. For example, a young artist who is passionate about painting spends hours in the studio completely immersed in her art.

Parenting often involves the use of extrinsic motivation early on, as a pathway to developing intrinsic motivation. A toddler is motivated to use the toilet by getting a star on her chart; a preschooler is motivated to follow her parents’ rules to avoid getting a time-out; a teenager is motivated to be home by curfew to avoid getting grounded.

The ultimate goal of parenting, of course, is for the children to grow into independent adults who are no longer dependent on extrinsic motivation to exist in society. Eventually, the child feels intrinsically motivated to use the toilet because sitting in soiled underpants is uncomfortable; she is kind to her friends and siblings because it is the morally correct thing to do and she wants to maintain good relationships with them; she comes home at a decent hour so that she can get a good night’s sleep and function well the following day.

Similarly, a long-term goal of treatment for Anorexia Nervosa is for the patient to be intrinsically motivated to stay healthy and remain in recovery. But while we wait for intrinsic motivation to develop, it is perfectly fine and, in many instances, absolutely necessary, to impose external motivations in order to nudge the person along towards recovery.

Patients with Anorexia Nervosa often have little or no intrinsic motivation to recover during their acute phase of illness. In fact, most patients are highly motivated to continue engaging in eating disorder behaviors because there are powerful biological, psychological, and social forces compelling them to do so. For this reason, it is often essential to use extrinsic motivations of some sort to get patients to engage in recovery-oriented behavior such as eating meals, gaining weight, refraining from purging, and attending appointments with their treatment team.

Patients with AN are often compliant, rule-abiding people-pleasers. We can harness these traits in a positive way to promote recovery. It is common for patients to report that they are eating and gaining weight to make their parents happy or to please their doctors. It is even more common for patients to comply with re-feeding and maintain their ideal weight in order to avoid hospitalization or continue playing the sport they love.

Parents often worry that, if left to her own devices, their child would most certainly eat too little, exercise too much, start purging again, and fall down the rabbit hole once more. This worry is completely valid, and this is precisely why patients need a very high level of support and monitoring for a long time after diagnosis. Incidentally, the need for a high level of support and monitoring continues for much, much, much longer than what is provided by most treatment programs or paid for by most insurance companies. One of the reasons why patients need such high levels of support for so long is that intrinsic motivation is neither realistic nor possible for most patients until they are further along in recovery.

While acutely ill patients often lack the motivation to recover, many patients who are weight-restored and further along in their psychological recovery feel very motivated to stay well. I believe that there are several reasons for this shift in motivation in the later stages of recovery:

1.) The ability to think more clearly, thanks to a well-nourished brain and body.

2.) Maturity. Patients get older and more mature as they progress through recovery, and thanks to a more developed prefrontal cortex, they can think ahead, make plans, and follow through with their intentions.

3.) Perspective. Patients in the later stages of recovery have often been through hell and back. They have reclaimed their lives, and while they may not remember much of the acute phase of their illness, they know it was awful and they have no intention of going back.

4.) Parental intervention. Parents who have helped their children recover from AN tend to be extremely motivated to help them stay well. Perhaps more importantly, they feel empowered to use the tools and strategies they’ve learned through treatment to maintain an environment conducive to ongoing recovery and to set limits, without hesitation, on any behavior that jeopardizes recovery.

Motivation seems to be the natural consequence of restored health and improved insight. Once an adolescent or young adult is no longer encumbered by AN, he begins to realize how sick he once was, and how much AN ruined his life. As he returns to school, sports, hobbies, and an active social life, he begins to build a life worth living. This new life motivates him to stay in recovery and deters him from engaging in behaviors that could lead to relapse.

I have found that older adolescents and young adults are often motivated to stay in recovery in order to achieve their goals. For example, they want to go away to college or graduate school, they want to study abroad, they want to get married and have children, they want to travel the world, they want to have a rich and meaningful life that is not dominated by intrusive thoughts about carbs or calories or the circumference of their thighs.

How can you enhance motivation in someone who is recovering from AN? Well, intrinsic motivation, by definition, must grow and flourish from within. It cannot be imposed upon someone from the outside. However, there are a few things that family members and clinicians can do which may facilitate development of intrinsic motivation:

1.) Help the person build a full, rich, meaningful life.

2.) Remind the person periodically (not forcefully or frequently) that his new life would not be possible without continued recovery.

3.) Highlight and enhance the personal characteristics that have helped the person achieve and maintain recovery (e.g., “You are such a strong, courageous, dedicated person to have overcome this illness”).

4.) Help the person identify his core values and support him in living a life that is congruent with these values. What is most important in life? How does he want to be remembered by loved ones after he dies? Unless the person is acutely ill with AN, he is unlikely to say that being thin, exercising excessively, or avoiding sugar and flour his core values.

Staying focused on core values and pursuing a meaningful life are powerful motivators and potent antidotes to the anorexic thoughts that come to visit from time to time.

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After Weight Restoration: The Role of Insight

One of the hallmark symptoms of Anorexia Nervosa (AN) is anosognosia, or a brain-based inability to recognize that one is sick. For this reason, most patients have little or no insight when they first present for treatment. Even months into effective treatment, most patients with AN continue to demonstrate anosognosia from time to time, if not consistently. The irony here is that most patients with AN do not believe they are sick until after they have gotten well.

I am outspoken in my belief that insight is unnecessary, not to mention unlikely, in early recovery from Anorexia Nervosa (AN). I do not expect my patients to have any insight whatsoever early on in their treatment with me. I expect kids with AN to present in my office denying that they have a problem. Their lack of insight does not delay or undermine treatment one bit.

In Family-Based Treatment (FBT), the patient is not required to demonstrate any insight at all during Phase I (Re-feeding and weight restoration). Phase II (returning control of eating to the adolescent) and even Phase III (establishing a healthy adolescent identity) can be successfully completed with a relatively small amount of insight on the patient’s part.

The re-feeding and weight-restoration components of treatment can be achieved without the patient’s consent or compliance. Through FBT and similar family-centered approaches, parents can feed their children complete, balanced nutrition and ensure that they maintain a healthy weight for as long as necessary. In theory, a patient could exist in an externally-maintained state of physical health forever, which would be far better than suffering the long-term medical and psychological consequences of AN. But this is not recovery.

Children and younger teens tend to lack the maturity to develop good insight even after their AN has been in remission for quite some time. Lack of insight is completely normal at this stage of development, even for kids who have never had a brain disorder. It is not necessarily problematic for recovering adolescents to lack insight as long as they are living safely under their parents’ roof.

For older adolescents and young adults, however, there comes a point later in recovery, after physical health is restored and most mental symptoms have subsided, when a patient does need to develop some insight about their illness and “own their recovery.” Patients do not need insight to get well, but they certainly do need insight in order to live a healthy, fulfilling, independent life.

As a side note here, the type of insight I am referring to here has nothing to do with “discovering the root cause” or “learning to love yourself” or “finding your voice” or any of the other talking points commonly referenced in ED recovery circles. The important insights to gain, in my opinion, are the following:

1.) Acknowledging and accepting that you have (or had) an eating disorder, which is a biologically-based brain illness that you did not choose to have and your parents did not cause

2.) Acknowledging and accepting the possibility of relapse

3.) Ability to recognize eating disordered thoughts, feelings, and behaviors in yourself

4.) Understanding the necessity of maintaining full nutrition, every day, for life

5.) Accepting the necessity of maintaining your ideal body weight in order to reduce the risk of relapse

How do you help a person who is recovering from AN to develop insight? It’s tricky, and it varies considerably based upon the patient’s own unique experience of having AN. Unlike full nutrition and weight restoration, insight cannot be thrust upon someone against their will. The patient must be an active participant in the process.

I find it helpful, as a therapist, to have frank conversations with patients and their parents about the biological basis of AN, potential triggers, vulnerability to relapse, and the importance of practicing good self-care. A single conversation at the start of treatment is rarely sufficient. Instead, I integrate these conversations into most of our sessions to help the patient absorb and internalize this information. For the first few months of treatment, these discussions are primarily for the benefit of the parents, as most kids are too malnourished and shut-down to process this information. However, after weight restoration and brain healing, these discussions can have a powerful impact on recovering kids.

Parents often have these insight-building conversations with their recovering teens at home. Often, teens will get defensive, shut down, or lash out when parents bring up these topics. But sometimes kids actually listen!

Many weight-restored patients go through a phase of romanticizing their AN, longing to return to the days of extreme thinness, perpetual motion, and hyper-focus on academics and athletics. While these feelings are understandable and typical at a certain stage of recovery, they need to be counterbalanced with conversations about the negative impact AN had on their bodies, their minds, and their lives. Otherwise, it is all too easy for recovering people to view AN through “rose-colored glasses.”

Bear in mind that the development of insight can take years. Recovered teens who initially presented for treatment at age 13-14 (the typical age of onset) will often show a blossoming of insight around age 17-18, just as they are preparing to leave home for college. This newfound insight is often the result of a variety of factors, including consistent full nutrition, brain healing, normal adolescent developmental processes, maturity, frontal lobe development, and successful therapy. I have worked with many adolescents for whom this happens beautifully, organically, and right on time. These kids go off to college in other states and thrive.

In other cases, however, the timing may be far less convenient. Those who develop AN at 16 or 17 years of age may not be sufficiently recovered to develop the insight needed to manage their illness independently at that magical age of 18. Similarly, who relapse during their junior or senior year of high school may have a setback in the process of insight development and thus may not be ready for independence right after high school.

In some cases, kids are diagnosed in childhood or early adolescence but don’t receive effective treatment until late adolescence. In these cases, it may take even longer for insight to develop if the illness has become entrenched and emotional maturity lags far behind chronological age.

Further, teens who have suffered through months or years of ineffective treatment may have built up an arsenal of bogus myth-based insight that has nothing to do with the reality of their illness. For example:

• “I developed AN as a way to cope with feeling out of control in life.”

• “I have to want to get better on my own. I have to do this for myself.”

• “Re-feeding doesn’t help us discover the root cause of your illness.”

• “I am enmeshed with my parents and this is keeping me sick. I need to become more independent.”

These myth-based “insights” very often result in parental alienation and protracted illness.

As you can see, all insight is not equal. The insights worth having are those that are based in empirical science, those that empower parents to help their offspring recover, and those that serve to help patients achieve and maintain their physical and mental health while living a full and meaningful life.

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After Weight Restoration: What’s Next?

Scientific research has established that consistent full nutrition and weight restoration are the essential first steps in recovery from Anorexia Nervosa (AN). A recent study by Accurso and colleagues – the subject of my previous blog post – demonstrated that weight gain is a catalyst for broader recovery in Anorexia Nervosa (AN). The necessity of normalizing eating patterns and restoring weight applies to all patients with AN: male and female, young and old, chronic and acute, inpatient and outpatient, mild and severe. While the task of supporting weight restoration in a patient with AN is daunting and exhausting, it is very straightforward.

After weight restoration, the next steps in recovery are less certain, more varied, and highly dependent on individual differences. The best way forward is often ambiguous for someone who is well-nourished but deeply entrenched in the illness. For some people with AN, weight restoration alone is sufficient to bring about full remission. But for others, weight restoration is merely the first step in a long journey towards wellness. Unfortunately, there is little scientific research to guide us in terms of how to help people with AN who are weight-restored but still suffering mentally.

Parents are often quite adept at determining what their child needs in order to move forward. For this reason, parents continue to be essential participants on their loved one’s treatment team even after her weight is restored. Although their role on the treatment team may change a bit, and their degree of involvement may be modified, they continue to be their loved one’s greatest resource in recovery.

After weight restoration, I collaborate with the patient and her family to figure out how we can work together to support her towards full recovery. This typically involves a written treatment plan that we all agree upon. I find it incredibly helpful to have a written treatment plan, as this eliminates confusion and keeps everyone on the same page, working towards common goals.

It is not always clear what the patient needs next, so treatment after weight-restoration is very often a process of trial and error. We create a plan, implement it, and see how the patient does. If she moves forward in recovery, fantastic! If she remains stuck or regresses, we reassess her situation and modify her plan based on lessons learned from her struggles.

My next few blog posts will examine various aspects of treatment and recovery for weight-restored patients with AN. Please feel free to leave a comment if there are any particular issues you’d like me to cover on this topic in my next series of posts.