Is the (Eating Disorder) Treatment Your Child is Getting FBT?

Family-based treatment
Photo by Gustavo Alves on Unsplash

When new families talk to me about Family-Based Treatment (FBT), I often find that they are confused about what it is and what it isn’t.

FBT is a type of evidence-based treatment for adolescent eating disorders. This treatment was developed at the Maudsley Hospital in London in the 1970s and 1980s; Doctors Lock and Le Grange manualized it into its current form in 2001. Because of its name, FBT is often confused with more general “family therapy.” Be careful, because these are not the same thing—while both involve the family, FBT is a very specific, behaviorally-focused therapy.

While a treatment that includes some elements of FBT—but falls short of the full manualized treatment—may work for some eating disorder cases, it may not work for more difficult cases. When FBT doesn’t work it is important to know whether the child has had an adequate course of the true treatment in its evidence-based form. This can be tricky—in the field of psychotherapy, most therapists identify as eclectic, meaning they adhere to no single therapeutic orientation but combine techniques from several (just scroll through any Psychology Today therapist profile to get a taste for how many different theoretical approaches most therapists endorse). We don’t yet know which elements of FBT are critical to its efficacy and make it such a successful treatment. This would take expensive dismantling studies in which different partial treatments are tested against each other. Except for studies documenting a separated FBT (where only the parents attend sessions), no such study has been cited in the literature. Until we have good evidence that suggests otherwise, treatments that stay true to the original, already-tested treatments are the safest bet.

I once worked with a patient with panic disorder who had had previous treatment. He told me that his previous therapist had conducted cognitive-behavioral therapy (CBT), widely accepted as the best evidence-based treatment for panic disorder. When I dug deeper, I found that his therapy had included no exposure to the sensations of panic—considered to be the core element of CBT treatment for panic disorder.  Instead, the treatment had focused on discussing his anxiety thoughts—a very different protocol. From this experience I learned to inquire carefully about the treatment my patients have previously received before accepting that it cannot work for them.

So it is with Family-Based Treatment. Sometimes parents tell me that they think they tried FBT but are not sure. If your child was treated in an academic center, it’s more likely they got the evidence-based treatment of FBT in its full form. However, some parents who tell me that FBT didn’t work also tell me:

  • They did FBT on their own, with no therapeutic support
  • They had meals with their child, but that the therapist met primarily with the adolescent alone
  • They didn’t supervise all meals because their child resisted it. 

In each of these situations, it is obvious to me that the treatment is not what I would consider FBT. And while it is true that including some aspects of FBT or even a “watered down” FBT may be better than no FBT or parent inclusion at all, it’s important to know whether your child had the real thing or not, especially if they end up needing more or different treatment.

Often, parents who tell me they struggled with renourishing a child on their own find that things go much better once they started working with me or another therapist. That’s not to say that parents should never try to renourish a teen on their own—just that supporting a child with an eating disorder is extremely hard work and best done with the support and guidance of a professional at their side.

Signs Your Child Received FBT

Accordingly, I created the checklist below for parents to determine whether the treatment their child received (or is receiving) is really FBT. To how many of the following statements can you answer “YES” (the more the better)?

  • My therapist received training through the Training Institute for Child and Adolescent Eating Disorders.
    • The basic training is a 2-day workshop. Have they attended one?
    • Have they received or are they receiving clinical consultation or supervision by a staff member of the institute?
    • Are they certified in FBT by the Training Institute (meaning they have completed the 2-day training and received 25 hours of consultation by a staff member around their treatment of 5 patients)?
  • My therapist owns, seems familiar with, and refers to the FBT treatment manual.
  • My therapist refers to and acknowledges the three phases of FBT:
    • Phase 1 —full parental control
    • Phase 2 — a gradual return of control to the teen
    • Phase 3 —establishing healthy independence
  • My therapist is familiar with the work of Drs. James Lock and Daniel Le Grange, developers of the FBT treatment.
  • My therapist adheres to the five principles of FBT:
    • I was specifically told I was responsible for restoring my teen nutritionally and interrupting behaviors that interfere with recovery (including bingeing, purging, and overexercise). I was specifically told I was responsible for planning, preparing, serving, and supervising all meals.
    • I was told we don’t know for sure what causes an eating disorder and it doesn’t matter.
    • Initial attention of treatment focused solely on restoring health including weight gain and stopping eating disorder behaviors.
    • Rather than being given prescriptive tasks, I was empowered to play an active role and to discover those strategies that worked best for my family and the child whom I know best.
    • I was taught to externalize the illness and see it as an outside force that has hijacked my child, threatens his or her life, and makes my child do things he or she wouldn’t normally do. My child did not choose the eating disorder.
  • I have had a family meal at the therapist’s office.
  • My therapist spends most of the time with the full family, meeting only briefly with the adolescent alone at the beginning of the session (or in the case of “separated FBT,” all of the time with parents).
  • My therapist or another member of the treatment team tracks my child’s weight and gives me feedback after every weigh-in on how he or she is doing.
  • I was specifically told I am responsible for supervising all meals and snacks to ensure completion. If purging has been a problem, I was told to supervise the child after eating to prevent purging.
  • If my child has been exercising excessively, I was told to prevent this.
  • After weight was restored and bingeing and purging and other behaviors had ceased, my therapist guided me in gradually returning my teen control over their own eating.
  • I was told it was important to be direct with my teen about eating adequate amounts of food.
  • My therapist discusses the importance of both “state” and weight to recovery—meaning my therapist explains that weight recovery is a step towards psychological recovery, but not an end goal in itself.

Dead giveaways your child did not get FBT

Below are some indicators that your child might not have “gotten FBT” and might be receiving some conflicting messages:

  • I have been told that we, the parents, had caused the eating disorder.
  • My therapist spends the majority of therapy time alone with the teen.
  • My therapist spends a lot of time talking about the past and reasons my child wanted, needed, or otherwise developed the disorder.
  • A dietitian has met alone with my teen and given him or her nutritional recommendations.
  • My child has been given a meal plan.
  • I have been told that it is an option to not supervise all meals or prevent all purging.
  • The FBT therapist has provided individual CBT, DBT, or ACT with the teen during the weight restoration phase.
  • I have been told from the start of treatment to “not be the food police” (in FBT, this might happen toward the end of treatment, or in Phase 2 with an older teen).
  • My child has been in charge of making his or her own meals from the outset of treatment.

Summary

In conclusion, FBT has been proven to be the most effective treatment for adolescents in clinical trials. That said, not every treatment works for everyone. In my opinion, it is best to start with something that has a backing and then try something else if that doesn’t work. When you have sought out an evidence-based treatment, it’s important to make sure you’re getting the treatment in its researched form.

Fat Positive Photography

Fat Positive Photography
Representation Matters

I’ve recently returned from the Association for Size Diversity and Health (ASDAH) Conference and I’m reflecting on all I’ve learned. I’ve wanted to share and further explore Substantia Jones’ keynote, “Fat Visibility Through Photography: the Who, the How, and the Hell Yeah.”

Jones is a photographer, a “Fat Acceptance Photo-Activist,” and the proprietor of the Adipositivity Project.  She started Adipositivity in 2007 to “promote the acceptance of benign human size variation and encourage discussion of body politics” by publishing images of women, men, and couples in larger bodies. Substantia is passionate about the fact that fat people don’t see a balanced representation of themselves in the media—as she says, “Humans need visibility. Positive and neutral visibility is being denied to fat people.”

So many of the media images we see of larger-bodied people portray them in negative and stereotyped ways: unkempt, unhappy, eating fast food, and often headless—as if they are ashamed to show their faces. At the same time, the range of body types provided by media images does not really represent most bodies. The media typically culls the thinnest or fittest sliver of the population, and then proceeds to photoshop the images of these bodies.  According to the Body Project, “Only 5% of women have the body type (tall, genetically thin, broad-shouldered, narrow-hipped, long-legged and usually small-breasted) seen in almost all advertising. (When the models have large breasts, they’ve almost always had breast implants.)”

In September 2009, Glamour included a photo of Lizzie Miller, a model who is a size 12-14. The photo showed Lizzie nude and looking joyful while displaying a roll of belly fat. The response was overwhelming—American women were thrilled to see a woman who looked more like them and was happy to boot.

While this was groundbreaking, the average American woman is a size 16. So where are the images of the upper half of the weight spectrum? It should be noted that it is not only larger bodies that are marginalized; other bodies are often not portrayed in mainstream media. These include bodies that are darker-skinned, disabled, aging, and gender diverse.

It is important that people in larger bodies see images of people that look like them. It is also important for all people to broaden their aperture on what people should look like. This includes viewing images of fat people who are happy, sexy, desired, and beautiful and engaging in all the activities that make up a fulfilled life.

Those working in the field of body acceptance confirm the therapeutic value of seeing attractive images of larger-bodied people. Unfortunately, these images can still be hard to find. One must look outside of the mainstream media. With that in mind, I thought it would be useful to provide resources for beautiful, artful photos of people living in larger bodies.

During her keynote, Substantia shared photos from several of her favorite fat-positive photographers, including those that inspired her. Below I list some of the photographers she shared and where to find their photos and information about them.

  • The photography of Patricia Schwarz can be found in Women of Substance – Portrait and Nude Studies of Large Women, published in Japan in 1996 by The Kiyosato Museum of Photographic Arts. Little has been published about her aside from this article, which states that Schwarz, who belonged to the fat liberation community in the 1980s, specialized in full-color photography of fat women. The book features women posing in domestic, natural and urban settings in various stages of clothing and nudity.
  • Laura Aguilar is known for her photographs of people from various marginalized communities (including fat, lesbian, and Latina). She is particularly known for portraying her own nude body as a sculptural element in desert landscapes.
  • Leonard Nimoy (yes, that one) published The Full Body Project, a collection of black-and-white nude photos of members of a burlesque troupe called the Fat-Bottom Revue. According to Nimoy, the purpose of the book was to challenge the harmful beauty ideals promoted by Hollywood.
  • Catherine Oakson was described in an obituary as a creator of “artistic self-portraits—some playful, some sensuous—and messages of body positivity.” Unfortunately, since her death, her photographs are extremely hard to find. Her website, “Cat’s House of Fun,” is only available via web archives (web.archive.org). Search for the website, http://catay.com and look at screen grabs prior to 2017
  • Shoog McDaniel, an artist and photographer living in Florida, was also present at the ASDAH conference, and their art was used in the conference program. Shoog was featured in this article in Teen Vogue which described them as “the photographer pushing the boundaries of queer, fat-positive photography.” Shoog states “the work that I do is about telling the stories of people who are marginalized and not usually put on the forefront, and whose lives are beautiful and important.”

Although Substantia’s presentation did not touch upon it, it’s worth mentioning Representation Matters, the world’s first website providing high-resolution, royalty-free, stock images of diverse bodies for commercial use. (The image in this post is from Representation Matters.) They specifically include larger bodies portrayed in a positive light. These photos are available for purchase.

Unfortunately, diet culture and thin privilege are alive and well, and those in larger bodies remain marginalized and excluded from most mainstream media. I hope you’ll check out these resources and come to appreciate the vast diversity of the human body. I purchased some photography books to share at my office. Together we need to work to challenge the notion that there is a best way to have a body and learn to celebrate the beauty of all bodies.

On a closely related topic, I’m thrilled to see that Meredith Noble has a great list of body positive artists to follow.

Source

Baker, Cindy. 2013. “Aesthetic Priorities and Sociopolitical Concerns: The Fat Female Body in the Photography of Patricia Schwarz and Jennette Williams A Review of Patricia Schwarz: Women of Substance, by Patricia Schwarz, and The Bathers: Photography by Jennette Williams, by Jennette Williams.” Fat Studies 2 (1): 99–102. https://doi.org/10.1080/21604851.2012.709447.

August 2018 LACPA Eating Disorder SIG Event

Jaye Azoff, Psy.D., Los AngelesDate: Wednesday, August 22nd at 7:30 pm

Presenter: Jaye Azoff, Psy.D.

Title: The Anatomy of a Recovery

Description: Recovery from anorexia nervosa (AN) follows an unpredictable, windy path. Rarely does it come quick; there is no single trajectory, no infallible indicators of how a treatment will play out. Opinions about the recovery process vary, depending on whose perspective is being sought. The patient—the former patient—sees it one way—but there is no guarantee that the opinions of others, therapists, partners, loved ones, will concur.

This talk addresses the question in a unique fashion. A patient: a former patient, (a doctoral level psychologist) will share her account of a treatment that unfolded over roughly twenty years.

Several points will be discussed. Importantly, the former patient will consider 1) briefly, the etiology of her illness (and we will assume a basic understanding of eating disorders here); 2) briefly, how (some) of the various treatments were directed and integrated across the multi-disciplinary teams (and throughout the years) 3) how her protests and resistances—and there were many— were met, and with what explanations 4) most importantly, looking back, what aspects of this treatment are now recalled as influential, elements seen in a positive light, elements perceived as detrimental.

Perhaps most important for the purposes of this discussion is the concept of the “power struggle” – that all too familiar war our patients learn over years of treatment with us to get into with themselves which then becomes acted out with their caregivers. How can we as treaters do better at not engaging, and shift the power and responsibility back into their hands?

Namely, how can we teach them that if they are to get well, it will be because they choose to get well? How do we teach them that they “win” nothing by restricting their snack for an evening or vomiting their dinner because they feel hurt over something we as clinicians might have said or done to them? These are complicated constructs, but not impossible ones, and by using Dr. Azoff’s past as a case vignette, we might be able to chisel away at some of the answers.

Bio: Jaye Azoff, Psy.D., has been practicing in the fields of clinical psychology and neuropsychology since 2008, when she graduated from the California School of Professional Psychology in Los Angeles, where she trained under the Health Emphasis Track. Dr. Azoff did most of her field training at Children’s Hospital Los Angeles’ Keck School of Medicine, where she practiced in the hematology/oncology neural tumors unit and trained in many roles over nearly eight years, eventually advancing to become the team’s neuropsychology fellow. It was Dr. Azoff’s own recovery from an eating disorder that propelled her forward and launched her into the eating disorders field. Currently, she is an eating disorders consultant, and she is the owner and operator of Basik Concierge, the world’s only boutique concierge firm offering wraparound services for individuals with eating disorders and their families. She is also the In-House Clinical Consultant for the Kantor and Kantor law firm, which fervently works to attain treatment for individuals with eating disorders struggling to gain access to care. Dr. Azoff is a past board member of the Eating Disorders Coalition. She is a sought-after speaker, having formally addressed the United States Congress in the Spring of 2013, and travels nationally to speak to patients and families affected by eating disorders, as well as delivers in-services to clinicians and other individuals eager to learn about various topics related to eating disorders. 

Location:  The office of Dr. Lauren Muhlheim (4929 Wilshire Boulevard, Suite 245, Los Angeles) – free parking in the lot (enter on Highland)

RSVP to:  drmuhlheim@gmail.com

SIG meetings are open to all LACPA members.  Nonmembers wishing to attend may join LACPA by visiting our website www.lapsych.org

On Buying Bigger Clothes: The Tale of Nana and Her New Shoes

On buying bigger clothes - Nana and her new shoesNana's golden shoesRecently, I went to visit my grandmother, who is almost 103 years old.  She was complaining of leg pain. She asked me to help her put on her shoes.  I tried really hard.  But in her sweltering apartment (she can’t stand any temperature below 80), I was sweating and the shoes were not going on.  I had visions of Cinderella’s stepsister needing to cut off her heels to get her feet into her shoes.

Nana has edema—swelling in the lower part of her legs—because she has been sitting in a wheelchair a lot lately.  She is quite fashionable and still loves to get dressed up every day.  But no shoes were fitting.

I had to nearly drag her, but I convinced her to go shoe shopping with me. When we went to the shoe warehouse, we pushed her in her wheelchair but brought along her walker as well.  Nana has always worn a size 7, but we could not fit her into any shoes smaller than an 8.5 or 9!  We tried on one pair of gold shoes —Size 9.  Finally, we were finding some shoes that fit.

Nana loved them.  And she found them comfortable. The woman who had insisted on wheelchairing everywhere, refusing to walk, suddenly started walking with her walker and refused to stop!  She was not taking off those shoes and she was not going to ride in the wheelchair again.  Suddenly, Nana was transformed.  Not only was she comfortable, but she felt stylish.

Why am I telling this story? Often when I am working with patients of any size who have eating disorders, they may have gained weight from a previous lower weight that the eating disorder was an attempt to maintain.  People often experience a sense of failure and surprise when their clothing size goes up a level, just like Nana did. This is no surprise:  our culture overvalues thinness.  But continuing to wear too small clothing is uncomfortable physically and mentally.

People often have a lot of reasons for not shopping for larger clothing —they worry they will be unable to handle the anxiety and sense of failure, and they also don’t want to spend the money on a larger size.  I had to help Nana face this.  She didn’t totally understand why her shoes didn’t fit, she felt disappointed, and she definitely didn’t want to spend any money. But boy, after she got those shoes on, she felt so much better!

My patients tell me the same thing —once they have clothes that fit well and are stylish, they feel more able to face the world, and getting dressed each morning is no longer an occasion for self-deprecation.

Bodies age and change in ways that we can’t control.  We need to accept that.  My advice is always to buy a few things that fit you well and help you to feel great and put the other clothes out of sight for now.

And when I spoke to Nana last week, she let me know how much she was loving her gold shoes and walking more again!

To the Family Member Who Worries I Am Not Helping Your Loved One’s “Weight Problem”

To the family member who worries I am not helping your loved ones "weight problem"
image by Representation Matters

Dear Family Member,

I understand your fears. I get it. You want the best for your loved one. You want him or her to have the best and healthiest and fullest life possible. I do too.

You believe that helping your loved one to lose weight will help achieve these goals. Here, I disagree—I will explain below.

You believe that weight loss will lead to better health. You have heard the scary information about the dangers of obesity and know there is an all-out war on obesity. Or you have seen or heard your loved one ridiculed or judged negatively by peers because they didn’t conform to a certain size.

 

However, did you know that:

I have been working in the field of eating disorders since my training at a bulimia research lab in 1991. When I first learned to treat binge-eating disorder, a course of cognitive behavioral therapy (CBT) for binge eating was expected to be followed by a course of behavioral weight loss. However, since that time we have learned that behavioral weight loss doesn’t work. And while CBT for binge-eating disorder can be successful, it rarely leads to significant weight loss, even among those considered to be in an “overweight” weight category. However, CBT does lead to cessation of binge eating and prevention of further weight gain, which are lofty goals in their own right.

I firmly believe that bodies are meant to come in a variety of shapes and sizes. We are not all meant to be Size 0 or 2 or 4.

Take shoe size: while the average woman today has an 8 shoe size, most do not—some will have size 5 and others will have size 10. Shoe size has a normal distribution within the population.

Just as with shoe size, so it is with body weight. Every body appears to have a set point, a weight at which it functions optimally. This set point is not destined to be at the 50th percentile for every person—some will be heavier and some will lighter. Repeated attempts at dieting seem to increase a body’s setpoint, which is the opposite of what most dieters are trying to achieve.

I no longer support attempts at deliberate weight loss because I have come to believe it is not only fruitless but in fact harmful. Every day in my practice I witness the destruction left by the war on obesity and failed diet attempts. I see the carnage of past dieting, weight regain, shame and self-loathing in the form of disordered eating and intractable eating disorders. Against this backdrop, I believe that above all else, my duty to your family member is to not harm them.

There is no magic solution. Failing to fit the thin mold can be a burden. I wish I could wave a magic wand and have your loved one’s body transform into one that would not be stigmatized, would be celebrated, and would fit into all spaces. But I can’t change your loved one’s genetic body destiny, just as I can’t change any person’s ethnic background or skin color to conform to the privileged group. And I believe the solution is not to change your loved one’s body to conform—the solution is to fight to end weight stigma and the oppression of larger bodies.

Here’s what I can do:

  • I can help your loved one recover from an eating disorder, using evidence-based treatments backed by scientific research.
  • I can help your loved one work on accepting and appreciating their body and all its capabilities.
  • I can help your loved one unfetter themselves from self-imposed rules and restrictions and live a fuller life.
  • I can help your loved unburden themselves from shame and self-loathing.
  • I can help your loved one to advocate for themselves if he or she needs accommodations from a world that was not built to accommodate his or her body.
  • I can help your loved one learn to stand up to weight stigma and bullying.
  • I can help your loved one request and receive respectful health care.
  • I can help your loved one improve their relationship with food so that eating and social situations are enjoyable.
  • I can help your loved one achieve peace.

If you want these things for your loved one, please let me do what I was hired to do—guide your loved one to healthiest, best, and fullest life possible. Please examine the basis of your own hope that your loved one will conform to the thin standard. While I know this comes from a good place, it’s not pointing to the right destination. There are happier places to land. There is much work to be done. We all have weight stigma.

To learn more, I suggest reading the following articles:

Interested in Weight Loss? I CAN’T Help You. Here’s Why

Are We Setting Recovery Weights Too Low?

Is Weight Suppression Driving Your Binge Eating?

How Health at Every Size Can Help With Eating Disorder Recovery

July 2018 LACPA Eating Disorder SIG Event

Men Struggle, Too: My Journey with Binge Eating DisorderDate: Thursday, July 12th at 7:30 pm

Presenter: Ryan Sheldon, Eating Disorder Advocate

Title: Men Struggle, Too: My Journey with Binge Eating Disorder

Description: Description: I’m often asked what’s it like being a guy with Binge-Eating Disorder. It’s sad but true, many view eating disorders as female illnesses. Why is there so much shame about being a guy with an eating disorder? Why did it take so long for me to get diagnosed? Come join me to find out what it’s really like being a guy with Binge Eating Disorder. I will share my story and give you insights into working with males with eating disorders. Here’s a recent article.

Bio: Ryan Sheldon, founder of the blog Mr. Confessions formerly Confessions Of A Binge Eater, a blog he created to not only document his body image and eating disorder struggles but also to promote self love. He is proud to be a much-needed voice for men whose struggles all too often are neglected, while encouraging them to reach out for professional help. Ryan is currently working on a book and has a self-love Instagram account @BingeEaterConfessions

Location: The office of Dr. Lauren Muhlheim (4929 Wilshire Boulevard, Suite 245, Los Angeles) – free parking in the lot (enter on Highland)

RSVP to: drmuhlheim@gmail.com

SIG meetings are open to all LACPA members. Nonmembers wishing to attend may join LACPA by visiting our website www.lapsych.org

Family-Based Treatment Can Help Depression and Self-Esteem Too!

FBT Depression and Self-Esteem

Family-based treatment (FBT) is a relatively new evidence-based treatment for adolescent eating disorders. It represents a paradigm shift from older treatments that focused on helping adolescents become independent from parents in order to recover from their eating disorder. In FBT, parents are central members of the treatment team and they are charged with guiding and changing their adolescent’s eating disorder behaviors. In FBT, the therapist meets weekly with the entire family, spending only about 5 minutes alone with the adolescent at the start of each session. It is designed as a standalone treatment. The adolescent is also followed by a medical doctor, but does not have additional appointments with a therapist or a dietitian.

Symptoms of depression and low self-esteem are common in adolescents with bulimia nervosa. One of the many concerns that I hear from parents considering Family-Based Treatment (FBT) for their child with anorexia or bulimia is that FBT won’t address other symptoms the child may have like depression or anxiety. Furthermore, families who are receiving FBT often feel pressured to add additional treatments such as individual psychotherapy for their adolescents to address these other issues. Even other non-FBT clinicians continue to be incredulous that adolescents can improve without other treatment. Fortunately, Cara Bohon, Ph.D. and colleagues at Stanford University recently published a paper that addresses this concern for adolescents with bulimia nervosa.

In their study, 110 adolescents with bulimia nervosa from two sites were randomly assigned to receive either individual Cognitive Behavioral Therapy (CBT) for adolescents or FBT. Cognitive-Behavioral Therapy (CBT), which is the most successful treatment for adults with eating disorders, focuses on understanding the factors maintaining the bulimia symptoms and developing strategies to challenge problematic thoughts and change behaviors. The therapist meets weekly with the adolescent. The two treatments are of comparable lengths.

Results showed that both FBT and CBT significantly reduced symptoms of depression and improved self-esteem. Previous papers suggest that abstinence from eating disorder symptoms occurs faster in FBT when compared with CBT for adolescents with bulimia nervosa. Thus, FBT may be a better option in many cases.

It is important to dispel parents’ fears that FBT will not adequately address depression and self-esteem. The authors state in the paper, “This concern can subsequently steer families away from an evidence‐supported approach in favor of therapies that may not be as successful in reducing binge eating and purging.”

In fact, the researchers point out that it may be that the cycles of binge eating and purging of bulimia serve to maintain depressive symptoms and poor self-esteem. Thus, one may not need a treatment that directly targets depression.

Dr. Bohon stated, “The reason we conducted this study is because comorbid depression is the norm with bulimia nervosa, and it was important to establish that you don’t automatically need any extra treatment to see improvement in the context of FBT. Obviously, if someone is still struggling after completing FBT, a referral for CBT for depression or another evidence-based treatment would be important, but it is likely not needed for most individuals.”

Source

Valenzuela, Fabiola, James Lock, Daniel Le Grange, and Cara Bohon. 2018. “Comorbid Depressive Symptoms and Self-Esteem Improve after Either Cognitive-Behavioural Therapy or Family-Based Treatment for Adolescent Bulimia Nervosa.” European Eating Disorders Review: The Journal of the Eating Disorders Association26 (3): 253–58. https://doi.org/10.1002/erv.2582.

Are We Setting Recovery Weights Too Low?

Are we setting target weights too low

At the recent International Conference on Eating Disorders in Chicago, I attended a plenary, Recovery from an Eating Disorder: How Do We Define It? What Does It Look Like? And Should It Always be the Focus? During this plenary, Anna Bardone-Cone, PhD spoke about the essential components of recovery from an eating disorder. She indicated that definitions of recovery should include the following three domains and proposed the following criteria for each domain of eating disorder recovery:

  • Physical — defined as BMI greater than 18.5
  • Behavioral— defined as absence of any binge eating, vomiting, laxative use, or fasting within the past 3 months
  • Cognitive — defined as EDE-Q subscales within 1 standard deviation of age-matched community norms.

Hold on a second—the weight criterion used to define recovery from anorexia nervosa in most studies is a BMI of only 18.5?

Most in the full plenary room agreed that for anorexia nervosa recovery, a BMI of 18.5 is too low a criterion to declare all people recovered. I agree with Laura Collins Lyster-Mensh, who made the following tweets:

  • Isn’t it possible that by setting target weights at the low end of the tail we are holding patients in chronic mental illness.
  • Setting low, population-based weight targets for ALL EATING DISORDERS means weight suppression and malnourishment and prevents psychiatric recovery for all but those who are genetically designed to be in smaller bodies, IMO.

I totally agree. If we now acknowledge that anorexia can occur in people of higher weights—a phenomenon often, and problematically, called “Atypical Anorexia”—then shouldn’t a BMI target as low as 18.5 be abandoned in favor of individualized recovery weights?

In fact, weight suppression researcher Michael Lowe was present at the plenary.  During the Q&A he proposed that rather than using a categorical definition of weight recovery (a single BMI number) we should use a continuum—for example, the recovered patient’s BMI relative to their pre-illness BMI.

How Are Recovery Weights Established?

Unfortunately, there is very little consensus on how to determine whether a patient with a restrictive eating disorder is at a recovered or healthy weight. This affects research and practice. If researchers define recovery based on an 18.5 BMI and this weight is really too low for many people with anorexia, what does this mean for the research studies? For one thing, in clinical trials a lower percentage of people would be deemed “recovered”, showing our treatments to be even less successful than we believe them to be.

But it has bigger implications for the potential for patients to truly recover. If we set recovery weights higher, maybe more people will be treated to full recovery. Setting the BMI bar so low means we’re not insisting on full weight recovery for all people. As Laura Collins points out, the effect of this is that only those who are privileged enough to be in genetically smaller bodies may ever actually reach recovery.

And what are the ramifications for practitioners? There may not yet be an established way to determine a recovery weight—consequently, many patients may never recover. If we acknowledge that gaining to a healthy body weight is a prerequisite for full psychological recovery, then we are dooming many people in larger bodies to a life of purgatory in which they remain insufficiently sick to need intensive treatment, but never achieve full recovery.

In one recent paper, Jocelyn Lebow, Leslie A. Sim, and Erin C. Accurso survey 113 child and adolescent eating disorder treatment providers inquiring about the methods used to determine weight restoration in clinical practice. Their findings show:

  • 40.7% of practitioners used growth curve data
  • the remaining (nearly 60%) employed a diverse range of approaches
  • providers who specialize in Family-Based Treatment were significantly more likely to use an individualized approach versus considering adolescent preference

Lebow and colleagues concluded that:

Although there is a modicum of endorsement for using growth curves to predict expected body weight, this is not universal practice and is inconsistent with methods used in treatment studies. The lack of an evidence-based method to calculate expected body weight—or even a best practice consensus for calculating this number—is a major oversight in the field that requires empirical attention.

Why Might Providers Set Recovery Weights Too Low?

What are some of the reasons providers might be setting recovery weights too low?

  • No empirical consensus or guidelines on how to set target weight
  • Lack of available growth records data to determine an individualized recovery weight
  • Financial limitations—insurance companies reduce costs by lower treatment limits, which are facilitated by lower weight goals
  • Client resistance—pushing for higher weights requires overcoming greater resistance and anxiety from the patient and sometimes family over higher weights.
  • Weight stigma—even treatment providers may be susceptible to society’s war on obesity, and consequently may err on the side of under-restoring a teen in recovery.

Over twitter, one mother responded to my conference tweets about an 18.5 BMI recovery goal as being too low and tweeted the following:

  • We need all professionals to understand the need for higher recovery weights. Recovery is about state not weight. So many parents know this but are stuck with uneducated team members who undermine their work.
  • If professionals consider a return to pre-eating disorder growth patterns for height and weight to be weight restoration, we parents are saying wrong. Eating disorder voices are very loud at this weight. We recommend an additional 10% for the first few years of recovery at least. This quiets the eating disorder voice and patients are more likely to stay recovered.
  • I want all current professionals worldwide to understand this. There are so many parents in our international group whose professionals are not getting it. Maybe it has not been studied officially but anecdotally we are seeing this in high numbers. 
  • If it’s not part of their training, providers should at least listen to and support parents in this. We are committed to our kids’ recovery every bit as they are. 
  • It takes parents a while to get it too. It’s frustrating for professionals when parents undermine. I was horrified at the first proposed recovery weight and was afraid of my child being made fat. But I got educated pretty quickly, opened my eyes and realized I needed to take it further in order to achieve full recovery.

Stephanie Zerwas, Ph.D. (not at the conference) chimed in over Twitter and asked the parent:

  • What language helped you as a parent to “get it? Parents often have a belief that being a little underweight can help their child not worry about weight gain, not realizing that it keeps kids stuck in limbo and hypervigilant.

The parent responded:

  • What helped us parents “get it” was seeing those in our support group brave enough to take their kids to higher weights reporting their kids’ eating disorder voices finally quiet down. We keep repeating state, not weight = recovery and realized goal weights are set mostly too low 
  • Too many parents are upset that eating disorder professionals are saying their kids are recovered and not listening to them when they say their kids are still vulnerable, using behaviors, and need to be a higher weight. This is the power of parent groups. We know this needs to change. 
  • Parents also not understanding weight restoration is a moving target. They come to our group stating their child is weight restored and still struggling and often clinging to a weight goal given years ago. There is no “Weight Restored” in eating disorder recovery only “state restored.” 
  • We are seeing this extra 10% to be effective in many of our children who still struggle with eating disorder behaviors at 100% pre-illness percentile of growth. In the meantime, if patients are still struggling and parents want this, we should be supported. But yes, bring on the studies!!

What Do Parents Say About Recovery Weights?

So, believing that parents do indeed know their children best and are an untapped resource to study this further, I took to Twitter to ask parents to share their experiences about recovery weights being set too low. I got an overwhelming response. Below are some excerpts of what parents sent to me:

  • At her lowest weight, our daughter was BMI of 21.9. Our doctor told us “she is not at an anorexic weight.” She is currently BMI 31.6. We felt she was finally starting to shift her thinking when she was at around a BMI of 29.5.
  • When my daughter was 17, she lost 25 pounds. At her lowest, her BMI never fell below 20. Yet she was extremely ill. After she had regained about 14 pounds, her period returned, but her “state” was still awful. She is now in a range of BMI 25.5 to 26. The difference this last 5 pounds has made had been amazing. Her level of insight and flexibility is much higher. Amazingly, the higher her weight, the happier she is with herself and her body. Reflecting back, I am grateful that no one told us she was “recovered” when she got her period back. She needed to get and stay back up to the 80 to 85%ile as per her personal growth curve. At the age of 19.75 she grew another .25 inch. If that isn’t proof she needed more weight, I don’t know what is! I hear so many stories in our group of parents being told to stop refeeding too early. Teams are generally not comfortable pushing weights back up to or above personal growth curves. We are lucky our team was an exception! In our online support group, we have seen time and time again that higher weights make a difference. And the extra weight generally comes with little risk.
  • My daughter was diagnosed at the age of 10.5 with anorexia. The original goal was to get my daughter at a BMI of 15.5 to a BMI of 18. In the next 2.5 years my daughter needed 6000 calories a day and a very high fat diet. She grew nearly 9 inches, went through full puberty, and doubled her initial body weight. Once her growth slowed and her metabolism went down and stabilized, we were able to get her weight up to around a BMI of 22 and that is when we saw TRUE RECOVERY begin. She began to eat “extra.” She began to ask for things. She began to be able to eat independently. Over the last 4 years she has put on around 20 to 25 pounds on her own, naturally. Her BMI is now around 24 – 25 and she is in a 100% solid recovery. She eats intuitively, independently, and reports being free of the eating disorder voice. Fats, high calories, and a MUCH higher weight were essential to getting our daughter into recovery. If I would have listened to the “experts” I believe she would still be struggling.  
  • My daughter was 24.2 BMI at 13 years old when she started exercising excessively and then restricting. She lost a quarter of her body weight in 7 months and our new pediatrician told her to gain 10 pounds and come back in 6 weeks. We fed her 6 times for a total of 4000 calories a day. She finally got her period at BMI 21.8 and within a few months, her anxiety was high and the team suggested it was time to start exercising. My online support group spent a long time helping me understand my own fat phobia and really worked to help me set a higher target weight. My daughter grew another three inches. She is now BMI 23.5 and this is the healthiest I have ever seen her. If I had listened to the specialists, she would be just as sick as she was before.  
  • At her lowest weight and her sickest, my daughter’s BMI was 19.3. We saw improvements in her state once she was over 25 BMI and in the “overweight” range. Had I allowed a reduction in her food intake at 23 BMI when it was suggested to me, my daughter would have been in a perpetual eating disorder purgatory.
  • My daughter’s current BMI is 24.6. Lower than that or increasing muscle over fat, it is as if her body goes into ‘starvation mode’ and she gets all silly and cranky and her period is delayed.
  • My son was given a target BMI of 19 by his clinician. This was not from a growth chart, it was from a generic BMI chart. My son was still very unwell at that BMI. Thoughts were very strong, and the desire to restrict was high. He was living a half-life, tormented with the anorexia. He was throwing away his lunch and manipulating weight. His clinician was adamant that he did not need more weight, and did not need more food, although I could see he was actually starving. She would not support me to take his weight higher or increase his meal plan. My online support group warned me that this was a common mistake with clinicians. I got my son (with great difficulty, after the clinician had insisted lower was okay), to a BMI of 24. We have never looked back. We have our kid back, he is 16 years old, he is in very strong recovery for some time now. I know the extra weight is what he needed to see recovery. He is living a normal teen life now, is happy and fully functional. We are into year 3 now, and he still needs 3 meals and 2 snacks per day of at least 4000 calories to stay in recovery. We owe our son’s recovery to the wonderful advice from parents that had been in our situation before us. They knew from other parents before them that a generic BMI figure is not recovery. Recovery is a state and not a weight. It makes perfect sense too. After all we do not expect everybody to have the same shoe size.  
  • My daughter was diagnosed approximately 18 months ago with Atypical Anorexia and was very unwell at a BMI of 19. I joined a support group just prior to her entering into treatment. In large part due to the anecdotal advice and experience of others in the group, I was of the firm belief that we needed to weight restore my girl to her own individual weight, not to a particular BMI or any particular upper number. Fortunately, our team was happy for me to take the lead with this approach, and we encouraged weight gain to wherever her behaviors began to abate and her weight settled naturally on its own, with NO reduction in intake. This ended up being at a BMI of around 26, which I do not believe most clinicians would encourage. However, I truly do have my happy girl back and I do not regret any one of those extra kilos. Her body has settled at a weight at which her mind is very well. I believe that if we had been given an upper number that she couldn’t go above, that we would have trapped her in her anorexia needlessly for so much longer.
  • My daughter did not seem to actually begin true recovery until she was at 23.5 BMI.  This was higher than the professionals in her life seemed comfortable with, but I proceeded with semi-confidence (having seen the results of higher weights in other patients, through their carers’ stories) and was never challenged.  Before this higher BMI she struggled so much with ED thoughts and behaviors – very little could get through to her…. therapy, talking, coaching, none was very helpful… only FOOD, in larger amounts that some professionals recommend (specifically with regards to fats – avocados, ghee/butter, olive oil).  At 23.5 something seemed to just “lift”.  She began to be able to participate for herself. She still had many ED behaviors and thoughts, but could push them aside much of the time.  She lost most of her body image issues, and began asking for food outside of the meal plan – especially things she used to enjoy (chocolate, etc.).  Unbelievably, she began asking for MORE food. Consensus among carers in the groups seems to be that 22-25 BMI is where most sufferers see true strides in recovery.  It is very, very rare that BMI under 22 is successful, at least when polled on the peer-to-peer carer support groups.  Most often, it seems as though 23-24 is the “sweet spot” for many.  My daughter has remained at this BMI (just shy of 24) for almost 6 months.

Summary of Recovery BMI

One online support group did their own survey: ” at what BMI did you see real recovery?”

Here are the responses ( note that most were given a target bmi of 19 by their clinician, and had to fight against that, or had to walk away from their provider to get their child into recovery)

BMI 21-22      4

BMI 22            3

BMI 22-23      4

BMI 23            1

BMI 23-34      5

BMI 24            4

BMI 24-25      4

BMI 25            4

So out of 29 respondents,  none got their kid into recovery at BMI 19 OR 20.

Stay Tuned for A Survey For Parents

I think this is an important issue that deserves more attention. I am working with the same researchers who did the above study to more formally study parents’ perceptions of their childrens’ recovery. Stay tuned for a survey so we can continue to learn from your parental wisdom.

If you interested in learning more about this study, please click here.

Sources

Jocelyn Lebow, Leslie A. Sim & Erin C. Accurso (2017): Is there clinical consensus in defining weight restoration for adolescents with anorexia nervosa?, Eating Disorders, DOI: 10.1080/10640266.2017.1388664

“Normal” Teen Eating

Normal Teen Eating

Parents are often surprised by the high energy needs of teen girls. This is especially true for those faced with restoring a malnourished teen’s weight.

 

But even parents of healthy teens can become confused about what is “normal” in a culture where dieting is pervasive.

 

This is what normal teen eating looked for this 16 year-old teen on one day. She was out of the house, walked about 2 to 3 miles, and got to choose all of her food. This teen is healthy, has good energy, and enjoys food. She is not usually very active. Not every day of eating is the same.

 

  • Breakfast
    • 1 piece of French toast with butter and syrup, a few tablespoons of hash browns
    • 3/4 of a Belgian waffle with whipped cream and syrup
    • 2 pork sausage links
  • Lunch
    • 4 pieces of tuna on crispy rice (could not finish the 5th)
    • An order of salmon sushi
  • Snack
    • 2 scoops of ice cream
  • Dinner
    • 1 fried chicken taco in lettuce with cabbage
    • 1 steak taco in a corn tortilla
    • 1/2 serving of creamed corn
    • Horchata (beverage)
  • Snack
    • A half wedge of blue cheese with crackers

I share this because it may be difficult for parents when teens eat the foods diet culture tells us are bad. Instead, it may be a way of creating a healthy relationship with all food and getting their high energy needs met.

May 2018 LACPA Eating Disorder SIG

Gretchen Kubacky, Psy.D. on Polycistic Ovary SyndromeDate: Tuesday, May 15, 2018 at 7 pm

Presenter: Gretchen Kubacky, Psy.D.

Title: Polycystic Ovary Syndrome and Eating Disorders: What’s the Connection?

Description: Polycystic Ovary Syndrome (PCOS) is currently estimated to affect up to 22% of women. It is the primary cause of female infertility and other endocrine disruptions. Women with PCOS have much higher rates of depression, anxiety, and eating disorders, particularly Binge Eating Disorder. Dr. Gretchen will present an overview of the physical and psychological symptoms of PCOS, how those symptoms present clinically, and discuss the challenges of appropriately diagnosing and treating eating disorders in women with PCOS. 

Bio: Gretchen Kubacky, Psy.D. is a health psychologist with a private practice located in West Los Angeles. Dr. Gretchen works primarily with hormonal issues and chronic and invisible illnesses, with a specialty in Polycystic Ovary Syndrome (PCOS). She is the creator of PCOS Wellness, a Certified PCOS Educator, and a member of the PCOS Challenge Health Advisory Board.  She is also a Certified Bereavement Facilitator for children and adults, co-editor of the Los Angeles Psychologist magazine, and a frequent speaker and author on health psychology topics. For more information about her private practice and PCOS education services, see www.DrGretchenKubacky.com and www.PCOSwellness.com.

Location: The meeting will be held in the office of Dr. Gretchen Kubacky, located at The Gardens building, 2001 South Barrington Avenue, Suite 121, Los Angeles, CA  90025 at 7:00 p.m. on Tuesday, May 15, 2018. Suite 121 is on the ground floor, at the north end of the building. After 6:00 p.m., you may park for free on the ground floor of the building. The parking entrance is located on the south end of the building, adjacent to Yoga Raj studio. There is also free and metered parking on the streets surrounding the building. The building and office are wheelchair accessible. 

RSVP: drmuhlheim@gmail.com

SIG meetings are open to all LACPA members. Nonmembers wishing to attend may join LACPA by visiting our website www.lapsych.org