Participating on an FBT Team

Image by griffert from Pixabay

Family-based treatment (FBT) is the leading evidence-based treatment for teens with anorexia nervosa and bulimia nervosa. While in an ideal world, every person with an eating disorder would have access to a full treatment team including a therapist, a dietitian, a medical doctor, and a psychiatrist, FBT calls only for a therapist to guide the parents and a medical doctor to manage medical needs. A dietitian is not required, but I have found that a dietitian who works primarily with the parents can provide valuable guidance. Sometimes there are other treatment providers. If there are multiple providers, it is important that team members are in agreement about treatment philosophy and goals. Otherwise, a nonaligned team can potentially be detrimental.

Overview of FBT (3 phases)

Family-based treatment is a manualized therapy, presented in a “manual” with a series of prescribed goals and techniques to be used during each phase of treatment. It focuses on empowering the parents to play a central role in their child’s recovery, using contingencies to reverse malnutrition, increase weight, and eliminate symptoms including restrictive eating, bingeing, purging, and overexercise. FBT is based on five principles:

  • Agnostic view of illness—there is no need to find a cause or underlying issue that caused the illness.
  • Initial symptom focus—the focus is on reversing malnutrition and eliminating other eating disorder behaviors.
  • Family responsible for refeeding/addressing behaviors—parents are empowered to take charge of all meals—including planning, cooking, serving, and supervision—to ensure they are consumed as well as preventing other behaviors such as bingeing and purging.
  • Non-authoritarian stance—the therapist is a guide and partner that empowers parents to help their child.
  • Externalization of illness—the illness is seen as an external force that is threatening the child’s life.

FBT consists of three phases:

  • Phase 1: Parents are fully in charge of and supervise all meals until behaviors have largely ceased and weight is nearly restored.
  • Phase 2: Once behaviors are largely eliminated, weight is nearly fully restored, and meals are going smoothly, parents gradually hand back some control of eating to the adolescent in an age-appropriate manner.
  • Phase 3: Once the adolescent has resumed age-appropriate independence over their own eating, the focus of therapy turns to other adolescent development issues, any remaining comorbid problems, and relapse prevention.

When to Add Other Providers

Many parents are incredulous that family-based treatment is a standalone treatment. It is primarily a behavioral treatment focused initially on a brain rescue and then on eliminating symptoms. Medical providers unfamiliar with FBT and treatment centers that insist on having complete teams may pressure families to add an individual therapist for the patient with the eating disorder to the team. This is not always advisable. Sometimes, in FBT, less is more; the work of the parents can be undermined by an individual therapist who either does not believe in or support FBT. Additionally, research shows that at least in the case of bulimia nervosa, no additional therapy may be needed: issues with depression and self-esteem resolved during FBT treatment.

Family-Based Treatment Teams

Dietitians

For families that want to work with a dietician who is familiar with FBT, my colleague, Katie Grubiak, RDN, and I have worked out the following successful protocol. In Phase 1 of FBT, the dietitian is only included when needed and only meets with the parents. This helps to empower the parents and prevents the dietitian from inadvertently colluding with the eating disorder. When a dietitian meets the teen too soon, we have found that the eating disorder tries to ally with the dietitian and the teen spends the time trying to negotiate for preferred “eating disorder foods.” We find it more effective to avoid giving the eating disorder that voice. Parents—who have after all been feeding their child since birth—know what their teen truly likes and can avoid being manipulated by the eating disorder.

The situations in which I have found the dietitian to be necessary include the following:

  • The adolescent has another issue that necessitates dietary restriction such as celiac disease, diabetes, or a food allergy.
  • The teen’s eating has been extremely restrictive and the range of foods at the outset is extremely small
  • There is concern about medical issues such as refeeding syndrome and intake must be more closely measured
  • There is a history of an eating disorder in a parent and they feel insecure about challenging their child’s eating
  • The parents are highly anxious and unusually overwhelmed and benefit from greater support and direction from a dietitian.

Towards the end of Phase 2, I find it very valuable to have the dietitian begin meeting individually with the teen. This can be helpful in trying to increase the teen’s responsibility for their own recovery. The dietitian can also bridge the gap between the parents being in charge and the child being in charge by temporarily overseeing the child as the parents relax control. We have found it very beneficial for the dietitian to help the adolescent work on determining portion sizes and exposure to fear foods and eating in different contexts and to have some initial meals without the parent and see how they do.

Individual Therapists

Resources are limited: families have limited finances and there are not enough eating disorder providers to meet the demand of people with eating disorders. I believe that in most cases we should wait until Phase 2 of FBT before adding additional therapies. In this way, we can see what issues resolve on their own when weight is restored. After a teen has resumed regular eating and has nutrition sufficient to support higher level brain functioning, individual therapy can be added if it is needed. This is the point in therapy at which the adolescent is likely to be more receptive and able to benefit from individual therapy.

Having worked alongside several individual therapists providing individual therapy while I provided FBT, I have some suggestions that can help keep all providers on the same page and maximize benefits to the family. The most common scenarios I have encountered include the following:

  • Dialectical Behavior Therapy (DBT) therapist addressing emotion regulation
  • Exposure and Response Therapy (ERP) therapist addressing obsessive-compulsive disorder (OCD) or symptoms
  • Adolescent therapist addressing comorbid anxiety, depression, self-esteem, or interpersonal issues

The biggest problems I have encountered occur when individual therapists focus on coaching the adolescent to individuate and stand up to parents. This is inconsistent with the early stage of FBT, which requires the parents to be empowered to make all food decisions for an adolescent who is incapable of making reasonable decisions about food given their brain starvation. In FBT we don’t encourage independence in eating until the teen shows they can handle it. Similarly problematic are providers who educate the adolescent about his parents being too “enmeshed.”

On the other hand, I have had great experiences with individual therapists who understood that keeping the parents in charge of eating was crucial for the teen’s recovery. Instead, these therapists worked to empower the parents to help the teen eliminate other obsessive behaviors such as compulsive exercise. I have also worked with successful  DBT teams that focused on teaching the adolescent skills to manage her distress while not attempting to question or undermine the parents’ authority over food decisions.

Advice for The Individual Therapist

My advice for the individual therapist:

  • Don’t blame parents for causing ED
  • Don’t disempower the parents
    • Don’t question parents being in charge of food
    • Don’t suggest compromising on food choices
  • Don’t describe parents as enmeshed—instead, reinforce their instincts in attending to a very ill child
  • Don’t focus on empowering the adolescent to share frustrations about parents being in charge
  • Do focus on empowering the adolescent to demonstrate recovery behaviors even if it is for show (“acting as if”)
  • Help the adolescent to develop coping skills to use when the FBT process is upsetting to them
  • Respect parents’ choice to stop activities until they eat (delineate consequences before meals)
  • Help the adolescent fill their life with other things
  • Remind the adolescent that the parents will be able to give back control as the adolescent demonstrates readiness
  • Let the adolescent vent about their frustration over parents being in charge
  • Acknowledge that although there are many things the teen can do on their own that are developmentally appropriate, at the present time eating independently is not one of them

 

Nana’s Poundcake, Food, and Cultural Connection

Nana's PoundcakeFood for us comes from our relatives, whether they have wings or fins or roots. That is how we consider food. Food has a culture. It has a history. It has a story. It has relationships. –– Winona Laduke

Food is about more than sustenance. It is about pleasure and joy and connection. Food is one of the ways we connect with our cultural traditions and our ancestors. This is one of the reasons I am so passionate about my work to help people with eating disorders. When someone has an eating disorder and they are fearful of eating or of eating certain foods, they miss out on the pleasures of food and they miss out on the opportunities to connect with others through food. They also miss out on their own connection with their relatives and their cultural heritage.

In my own family, my 103-year-old Nana has always been known for her piano playing and her delicious poundcake. While her prized Steinway piano now stands in my home, I did not inherit her piano-playing her abilities. I did, however, learn her poundcake recipe.

From the time I was a young girl, I have memories of “Nana’s poundcake.” Simple to make with only 5 ingredients, buttery and yummy. During visits to Kansas City, I looked forward to making it with her. And when she visited us in New York we would make it together. And, occasionally my mom and I would make it without Nana. My kids have had the experience of making poundcake with my Nana, their great grandmother. And they have made it with me. After she eventually passes, we will retain this connection to my Nana and my kids will hopefully continue to make and share her recipe with future generations.

 

 

 

 

 

Photos of my daughters making poundcake with Nana back in 2012 at her apartment (she was 96)

I am glad to have this connection to Nana and to be able to fully enjoy making and eating poundcake with all its rich butter and sugar. What joy and connection I would be missing out on if I were afraid of eating it. To be able to make it and eat it with enjoyment enriches my life and allows me to have a shared experience through four generations of my family. I will always have joyful memories of baking and eating poundcake with the different generations in my family.

Bonus Feature — Nana’s Poundcake Recipe

  • 1/2 pound salted butter (2 sticks) – softened
  • 1 3/4 cup sugar
  • 5 eggs
  • 2 cups sifted flour
  • 2 T vanilla

 

  • Cream butter and sugar
  • Add eggs one at a time while beating constantly
  • Add flour and flavoring
  • Pour into well-greased loaf pan (or bundt pan)
  • Bake at 350° for 90 minutes

Photos from a poundcake I made with my daughter in 2019.

When Your Child With an Eating Disorder is Sick….

Guest post by Dr. Jennifer Johnson

When Your Child with An Eating Disorder is Sick...
Gambar oleh Clker-Free-Vector-Images pada Pixabay

When parents are renourishing a child with an eating disorder and that child gets sick, parents often don’t know what to do. Some families may back off on feeding every time a child gets any illness, which can be a risky practice. Especially during Phase 1 of FBT, ensuring eating is a priority. To help parents, I’ve asked Jennifer Johnson, MD, a medical doctor who specializes in treating patients with eating disorders, to share some advice.

First, let me say that in general, minor illness should not cause a kid with an eating disorder to lose weight. Parents who are refeeding their child know that even missing a meal or a snack makes a difference in their progress. Don’t let illness throw you off course. As you know, failure to gain as expected may occur if nutrition is even a bit compromised. It is absolutely not a given that illness or surgical procedure must cause weight loss. When I hear that someone has lost 3 pounds “because they had a cold” the previous week, I ask a lot of questions – that should not have happened.

Second, plan ahead. After you’ve read through my answers and looked at other parents’ recommendations, be proactive. Make a plan with your child and treatment team about what you will do if they get sick (which they inevitably WILL at some point during recovery). They should know that they WILL still be eating. But talk about what foods they tend to like when they are ill, and think about how to plug maximum nutrition into them. Buy any non-perishable supplies and stock up on over the counter medications for colds, coughs, and fever. (And please have a thermometer on hand! A $10 digital one is plenty good to give us doctors valuable information.)

What should parents do in terms of feeding when a child with an eating disorder has a head cold or sore throat and loses their appetite? Is it necessary to avoid dairy?

If your child is listless and feeling unwell, they will often not be very hungry for a couple of days. A sick child needs care and comfort. Caring for a sick child who has an eating disorder includes keeping up the nutritional intake. You don’t want the eating disorder to think that illness is a good way to sneak through the back door. And, there are other times when your child is not hungry, just from refeeding itself, and they have to eat anyway. So, push ahead, but gently. Present nutrition dense food and beverages that will be particularly appealing to your child. Does a milkshake sound appetizing? You can add a packet of Benecalorie. (There’s nothing wrong with dairy, by the way.) Chicken noodle soup? Maybe add some extra pasta. There are lots of helpful posts from parents on the Around the Dinner Table Parent Forum.

What about if they have a fever?

Having a significant fever (101 or above) increases fluid needs as well as metabolic rate (more calories are burned). Your child will feel better if you control the fever with regular doses of acetaminophen or ibuprofen. Giving the medication at regular intervals, say every 6 hours for acetaminophen, may prevent the fever from getting as high as it otherwise might. This also helps with the headaches that usually accompany fever. Keeping your child hydrated, particularly with something like Gatorade, will also help them feel better – and thus more likely to have some appetite. Some kids maintain their appetite when they have a fever and of course, it’s fine to continue refeeding. Otherwise, know that keeping up nutrition during an illness helps your child feel better sooner, and push on. Again, it’s helpful to adjust what you give them based on their preferences.

What about when kids in recovery have the stomach flu?

What do you do if they’re vomiting?

Generally, vomiting is worst at the onset of an episode of stomach flu and becomes less frequent over the next 24 hours. A parent’s main goal when a kid is vomiting is to keep them hydrated. I recommend not giving anything by mouth for 2 hours after they’ve thrown up. Then you can give them ice chips or a couple of teaspoons of water. This liquid will get absorbed from the mouth. Do this every 5 minutes or so for half an hour. If they haven’t vomited again, you can have them try slightly larger amounts of liquids at less frequent intervals. They should be able to keep down about 2/3 of a cup of liquid, and be hungry, before you try a very small amount of food. Slowly increase the amount you give them. Kids may become ravenous and eat a huge meal, but then throw up everything they’ve just eaten. A kid who throws up a day or two into recuperation may have just overdone it. In that case, you’ll need to let up a bit before pushing back into refeeding.

What about diarrhea?

For kids with diarrhea, we don’t generally recommend giving any medications that are designed to decrease the number of stools (bowel movements). No major food restrictions are needed. There is nothing magical or beneficial about the so-called BRAT diet (bananas, rice, applesauce, toast), which is of low nutritional density. Studies have shown that having diarrhea for a few days does not make someone lactose intolerant. We know that eating when you have a “stomach bug” with diarrhea will generally increase the number of diarrheal stools. But we also know that at the end of the illness, people who have continued to eat will end up better nourished (= digested more calories). And that, of course, is the ultimate goal.

One thought: you may want to speak with your child’s doctor about a proactive prescription for a small number of anti-emetic tablets (that dissolve in the mouth) to have on hand in case your child gets stomach flu. I don’t normally recommend this but refeeding is an exception. We want to minimize the duration of nausea and vomiting to make it easier for your child to eat. Also, many of my patients who have eating disorders are afraid of truly fearful of vomiting (a condition called emetophobia), which only makes stomach flu worse for everyone. If your doctor is willing to do this, they undoubtedly want you to call before you give the medication.

What if your child has no appetite (due to illness)

Biology is on our side. When a kid (or another human being) eats less due to a minor illness, appetite typically returns with a vengeance and we make up for what we’ve missed. For a kid in the early refeeding phase, of course, it is normal to not feel hungry. So you may not know whether your child is not hungry because they’re not feeling well or because they’re refeeding. In either case, your eating disordered child needs you to continue to push forward. Refeeding is the mainstay of treatment and you’re the team leader. Go for it!

Please note that none of the above should be construed as medical advice. If you have concerns about your child’s health, contact their doctor. Some examples of when you should call the doctor are: Bloody diarrhea, high fever (102 or above), vomiting that continues more than 24 hours, weakness, severe dizziness or fainting, or very little urine.

About Jennifer Johnson, M.D., MS, FAAP

Dr. Johnson is a medical doctor. She has more than 20 years’ experience as a pediatrician and adolescent medicine specialist. She practices in Newport Beach (Orange County), California.

Dr. Johnson is certified by the American Board of Pediatrics in Adolescent Medicine as well as in Pediatrics. Dr. Johnson also has an advanced degree in public health. She has been a professor in the Department of Pediatrics at the University of California, Irvine School of Medicine, where she served as director of the adolescent medicine program. Dr. Johnson has taught medical students, residents, faculty, and community physicians, for whom she continues to present educational programs. She has presented at national meetings of many organizations, including the American Academy of Pediatrics and the American Academy of Family Practice. Dr. Johnson has written many research articles and book chapters related to adolescent and young adult medicine.

Dr. Johnson is an advocate for adolescents and young adults. She is a Fellow of the American Academy of Pediatrics (AAP). She has led many activities in the Academy’s Section on Adolescent Health and served as its chairperson. Dr. Johnson is active in the Orange County chapter of the AAP, as well. Current projects include the Teen Safe Driving Initiative and healthcare for GLBTQ teens.

Dr. Johnson has also been active in the Society for Adolescent Medicine. As a member of the medical advisory board for Teengrowth, Dr. Johnson wrote many articles and answers to reader questions. Articles and webcasts by Dr. Johnson are posted at Healthology.com, medbroadcast.com, and the New York Daily News. 

Dr. Johnson is on the medical staff of Hoag Hospital in Newport Beach.

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

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.

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?

 

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.

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.

And now, I am proud to announce that study is underway, so we can continue to learn from your parental wisdom. We hope you will participate in the study.

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.

On Empowering Parents—Not Pathologizing Them

Empowering Parents I often write about the importance of including parents in the treatment of adolescents and young adults. My work is informed by my training in Family-based Treatment (FBT), which as a central part of treatment seeks to empower parents to help their ailing children with eating disorders to return to health. When asked why families should be the center of treatment, I usually cite the AED guidelines on the role of the family, The Nine Truths About Eating Disorders, and the vast evidence base underlying FBT. I often discuss how providers who see families with children with eating disorders get a distorted view of the family: they do not have the benefit of having seen how it functioned prior to the eating disorder. Parents’ behaviors are often pathologized when they are actually the normal response of healthy parents to a child in distress.

This post is different—here I will share a more personal perspective.

Recently, one of my children (anonymized here because the story is theirs to tell) stumbled. My child was fighting a mental health issue that was not an eating disorder. The experience of watching my child struggle, and struggling to help my child, has further informed my thinking on this issue.

Sadly, it remains common for parents of children, adolescents, and young adults with mental health problems to be judged, labeled, blamed, and excised from the child’s treatment. This has happened to families with whom I have worked. Parents have sometimes been labeled as “enmeshed” or “overprotective.” This is not productive.

I’m writing this blog to share how beneficial it was personally to be included in my young adult child’s treatment. First, let me give you some background.

For Most of My Parenting Years, I Was Balanced

I care for my children deeply and have chosen a career that has allowed me the flexibility to be present in their lives and to be their primary caretaker. At the same time, I have been anything but a coddler. All three of my children were sleep-trained at less than six months, left at a young age with non-family babysitters, and dropped at preschool on the first day. I shed some tears, but I was not a parent who stayed and watched outside of the classroom for months; I went to work.

I also developed a certain toughness to set limits. During my kids’ early years, I worked at Los Angeles County Jail, where I encountered numerous inmates demanding sleeping medications or “more desirable” housing assignments and then threatening suicide when they didn’t get their way. I became a pro at placing inmates on suicide watch and walking away despite their sometimes yelling at the top of their lungs that they would tell the entire jail, “It’s because of you, Dr. Muhlheim, that I will kill myself.”

I am not a perfect mother, but I am a highly dedicated, devoted one. I have sought to balance my joy in raising my children with time to pursue my own interests and career.

When My Child Started to Struggle I Became Highly Involved

When I work with parents of teens and young adults with eating disorders, I encourage parents to trust their instincts. “Parents know their kids best,” I tell them. During the transition to college, when my child was supposed to be individuating, I knew something was amiss, so I hovered more than usual.

Fortunately, when my child wobbled, I was prepared. I trusted my instincts. I was fully present: watching, standing close, getting my child help. I helped save my child’s life. There are powerful cultural expectations that parents should back off and allow their child to individuate. There is less support for parents who choose to step in at this moment. Observing my behavior at that time, I may have been labeled as overprotective.

Even my child, who recognized the need for parental help, was fighting against it. This was confusing to their therapist, who later wrote in a report, “There is a weird dichotomy between the child and the parents. The child refuses to sign a release of information for the therapist to speak to the parents, but the child appears to reach out to the mother for support.”

Rather than pathologizing hovering parents, we need to recognize that they are doing it for a reason.

Professionals Supporting, Not Blaming Parents

The hardest moments of this whole journey were those times that, on top of his worry for our child and whether they could or would actually recover, my husband blamed himself for causing the problems our child was facing. This tendency of parents—to blame themselves for any problem that befalls a child—is typical, whether or not the problem could be attributed to parenting. I noticed that when my husband started to blame himself, we both became hopeless and lost focus on helping our child. These were dark times—it was hard to have our own faith and be present for our child.

Fortunately, we had the means to seek out high-quality treatment. Our child was treated in a center that specializes in treatment often used for a problem for which parents have historically been blamed. In this program, we as parents were given much-needed support and services as well. Importantly, the clinicians never indicated they believed that we had caused our child’s problems. Instead, we were validated, supported, and given a framework for understanding our child’s problems that did not point the finger at us.

Made/Makes All the Difference

Further, our responses to our struggling child were validated as a reasonable response to experiencing our child’s struggles. We were supported in our child’s recovery, empowered to play a role, included in the treatment, and seen as parents doing our best. This was profound. I think it made all the difference.

Our child worked hard and so did we. With the proper help and our support, our child is now healthy and firmly back on track. My hope for other parents of floundering adolescents and young adults is that they are treated with the same respect that we were.

A Viewing Guide for “To The Bone”

Ten Things I Want Viewers of To the Bone to Know

Eating Disorder Film Guide“To The Bone,” Marti Noxon’s semi-autobiographical film about her experience as a young adult living with anorexia, was released today on Netflix and has already stirred up much controversy within the eating disorder community. As a general rule, I do not see things in black and white. As with anything, I see this film in shades of grey – it handles some things well and some things poorly. Many concerns have already been aired widely in both mainstream and social media.  Foremost among these concerns is the movie’s reinforcement of the anorexia nervosa stereotype by portraying an emaciated white female and the weight loss that lead actress Lily Collins underwent to play the role. I will not rehash these here; instead, I hope to shed light on some other important issues and to provide an educational piece to accompany the film.

  1. This film may be triggering. It shows images of severe emaciation and may either be upsetting to those vulnerable to eating disorders, or inspire a competitive desire to be “as skinny”. Often, people with eating disorders don’t feel “sick enough”; anorexia nervosa can be a competitive illness. (Reports are that pro-ana sites are already using images of Lily from the film. While it’s concerning that the film adds to the available library of these sorts of images, this library is already huge – if they didn’t use this image, it would be easy to find another.) Those susceptible must exercise caution when viewing this film and if they are triggered, they should contact their treatment team or contact an organization such as the National Eating Disorders Association for help.
  2. It is difficult to make a film that accurately portrays eating disorders. To depict eating disorders on film, behaviors must be shown. Yet much of the suffering from an eating disorder is internal and harder to depict. This film is not an educational film – it is a piece of entertainment. Nevertheless, I think it does bring eating disorders into the mainstream. The film portrays some things accurately – with others it takes great liberties. Even with these departures, I do think it has virtues that can do some good. I will discuss these more below.
  3. This is one person’s story. Marti Noxon’s aim is to tell her story and she has a right to do so. She has been public that many years ago she suffered from an eating disorder and wanted to both shed light on and draw more attention to the issue. And that she has done! Based on the talkback I attended with Marti Noxon and actors Lily Collins and Alex Sharp, Marti recognizes that she can neither represent the diversity of all people with eating disorders nor speak for the range of people affected. She hopes that her work will open the door for others to tell their own stories, a hope I share. For those interested in a more diverse story about eating disorders, check out the work of Tchaiko Omwale, who is working to complete her film Solace. If you are committed to helping bring more diverse voices forward, you can contribute to help her complete her film.
  4. To The Bone accurately portrays some of the aspects of living with an eating disorder. I do not believe the film overly glamorizes anorexia. It illustrates the mindset and some of the mental anguish of someone with an eating disorder. The film displays a number of common eating disorder behaviors. We see Ellen and her peers engaging in behaviors such as calorie-counting, dietary restriction, overexercise, bingeing and purging, and chewing and spitting. Chewing and spitting is displayed in a restaurant scene in which Ellen goes out to eat with Lucas, her friend from treatment. Chewing and spitting is a lesser-known, but significant eating disorder behavior that is not commonly talked about or assessed by professionals. It is a frequently associated with more severe eating disorder symptoms and suicidal ideation. However, the behavior is more likely to occur in private than in public. It can occur in the context of anorexia nervosa as well as bulimia nervosa or other disorders.
  1. Eating disorders are serious mental illnesses and can be life-threatening. The movie shows Ellen and some of her peers needing medical attention and carefully balances showing the gravity of their situation with building hope for recovery.
  2. To the Bone paints a very Hollywood picture of recovery. While the movie adequately portrays Ellen’s ambivalence about treatment, it implies that things shift when Ellen “decides” she wants to recover. It disturbs me greatly that Dr. Beckham tells Ellen, “I’m not going to treat you if you aren’t interested in living.” Many people with anorexia nervosa have anosognosia, a symptom that causes patients to deny their illness and refuse treatment as a result. We now know that enough food, weight gain, and a cessation of eating disorder behaviors are prerequisites for recovery from anorexia nervosa. Usually some physical restoration is required before a patient can really want to recover – Dr. Ovidio Bermudez calls this a “brain rescue.”
  3. The movie does not model modern eating disorder treatment practices. But realistic treatment would probably not make a good Hollywood story. For starters, I would never suggest a therapy patient change his/her name! More seriously, in eating disorder treatment we prioritize nutritional recovery. This refers not to specific nutrients, but to the development of healthy eating habits including regular meals and adequate amounts of food. This applies to people with all eating disorders, not just anorexia nervosa. People with eating disorders need as a primary element of treatment food – balanced, sufficient, and regular eating. The movie portrays the patients in the residential treatment center as each able to choose their own food. While some patients eat some portion of the meals served, other patients eat nothing (or the one character with BED repeatedly eats only peanut butter out of the jar). I know of no treatment setting that would not have a primary focus on structured regular meals and patients having requirements for meals that can become less restrictive as they progress in treatment.
  4. I worry that the portrayal of Ellen’s family reinforces old myths about eating disorders being caused by families. To reiterate, families do not cause eating disorders. Ellen’s father is unavailable (and never even appears), her mother has had mental health problems (and is involved in a new relationship) and no one is really there for Ellen, except her stepmother who takes her to treatment and her half-sister. I do love the portrayal of the relationship between Ellen and her half-sister. I think this relationship captures the mixture of love, concern, and anger experienced by siblings.
  5. The movie misses the opportunity to depict the family as important allies in treatment. No one is really involved in Ellen’s treatment beyond the family session, and Dr. Beckham states there is no need for any future family sessions on the basis of how badly it went. None of the young people in this house have their parents involved in their treatment (at least that we see). This is very unrealistic in this day and age. Almost every treatment center involves family members to a greater or lesser degree. In reality, parents can play a central role in the treatment of adolescents and young adults, are usually included in treatment, and can even drive the treatment when their youngsters are incapable of seeking treatment on their own or have anosognosia. Parents can also help with nourishing their youngsters back to health (but not in the dramatic way it was portrayed in the film…with a baby bottle). Family-based treatment (also referred to as the Maudsley method and mentioned in passing in the scene where the moms are in the waiting room waiting for their daughters to have an intake with Dr. Beckham as something they have tried) is actually the leading treatment for adolescents and is also effective for many young adults. It focuses on empowering the family to be an important part of the treatment team and able to fight for recovery on behalf of an unwilling or unmotivated youngster and also provide meal support.
  1. Three Things I really like about the film:
    1. I love that Dr. Beckham says, “There is never one cause.” This is true.
    2. I love that it builds hope for recovery by showing Lucas as doing well and actively working on recovery.
    3. I love that it shows a male and an African-American with eating disorders.

Although I was a consultant for the film, I had no influence on the story.

In conclusion, please View the Nine Truths PSA the cast and crew of To the Bone produced for World Eating Disorders Action Day. While aspects of the film veer far from reality, the filmmakers are committed to the cause and, to support eating disorder education, they made this PSA which aligns with the best current evidence on eating disorders. Most of the messages I would want viewers of the film to come away with would be covered in this fabulous video. You can also read the Nine Truths About Eating Disorders:

Truth #1: Many people with eating disorders look healthy, yet may be extremely ill.

Truth #2: Families are not to blame, and can be the patients’ and providers’ best allies in treatment.

Truth #3: An eating disorder diagnosis is a health crisis that disrupts personal and family functioning.

Truth #4: Eating disorders are not choices, but serious biologically influenced illnesses.

Truth #5: Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses.

Truth #6: Eating disorders carry an increased risk for both suicide and medical complications.

Truth #7: Genes and environment play important roles in the development of eating disorders.

Truth #8: Genes alone do not predict who will develop eating disorders.

Truth #9: Full recovery from an eating disorder is possible. Early detection and intervention are important.

Produced in collaboration with Dr. Cynthia Bulik, PhD, FAED, who serves as distinguished Professor of Eating Disorders in the School of Medicine at the University of North Carolina at Chapel Hill and Professor of Medical Epidemiology and Biostatistics at the Karolinska Institutet in Stockholm, Sweden. “Nine Truths” is based on Dr. Bulik’s 2014 “9 Eating Disorders Myths Busted” talk at the National Institute of Mental Health Alliance for Research Progress meeting.

Five Reasons Parents Should be Included in the Treatment of Children and Adolescents With Eating Disorders

I had the honor of presenting a workshop yesterday along with Therese Waterhous, PhD/RDN, CEDRD. and Lisa LaBorde, Outreach Director for Families Empowered and Supporting Treatment of Eating Disorders (FEAST) at the IAEDP Symposium 2016. Our workshop was entitled, From “Worst Attendants” to Partners in Recovery: Empowering Parents as Agents of Change for Children and Adolescents with Eating Disorders.

Slide1

A growing body of scientific research demonstrates that parents and caregivers can be a powerful support for a child in recovery from an eating disorder. This model of care is a radical shift from the traditional individually focused therapeutic approach and requires significant changes in how patients and families are treated within a clinical practice.

During my section of the presentation, I presented Five Reasons to Include Parents in treatment for youngsters with eating disorders. I share them here:

  1. The reason to exclude parents was based on theories that have now been debunked.

In the late 1800s Gull suggested that families were “the worst attendants” for their children with anorexia nervosa, and this set the tone for many years. More recent perpetrators of this viewpoint were Hilda Bruch and Salvador Minuchin. In the historical treatment of eating disorders, parents were blamed and the children were taken away to be fixed by professionals. When ultimately sent back home, parents were told, “Step back,” “Don’t get into a battle for independence, “ and “Don’t be the food police.”

These practices were based on early theoretical models for eating disorders that have not been supported by empirical studies. Research has not been able to identify any particular family pattern that contributes to a child’s eating disorder.

  1. Best practices now state to include parents (and not blame them).

As the following clinical guidelines demonstrate, it is no longer the appropriate standard of care to exclude families from treatment.

The Academy for Eating Disorders’ position paper on The Role of the Family in Eating Disorders:

  • The AED stands firmly against any model of eating disorders in which family influences are seen as the primary cause of eating disorders, condemns statements that blame families for their child’s illness, and recommends that families be included in the treatment of younger patients, unless this is clearly ill advised on clinical grounds. 

The Nine Truths About Eating Disorders consensus document, produced in collaboration with Dr. Cynthia Bulik, PhD, FAED states:

  • Truth #2: Families are not to blame, and can be the patients’ and providers’ best allies in treatment.

The American Psychiatric Association (APA) Guidelines for Eating Disorders also advises:

  • For children and adolescents with anorexia nervosa, family involvement and treatment are essential. For older patients, family assessment and involvement may be useful and should be considered on a case-by-case basis. (p.12)
  1. Research shows better and faster results when parents are included in mental health treatment for their children.

Randomized controlled trials of adolescents with anorexia nervosa and bulimia nervosa show that adolescents who receive family-based treatment, in which parents play a central role, achieve higher rates of recovery and recover faster than adolescents who receive individual adolescent focused therapy. This result is consistent with findings for other psychological disorders, including Obsessive-Compulsive Disorder (improved outcome is found when families are included in treatment) and schizophrenia (a large scale study found greater improvement when treatment included family education and support as part of more comprehensive care).

  1. Parents are often good allies in fighting eating disorders.

On the one hand, patients with eating disorders (and especially younger patients) are often significantly impacted by malnutrition. Research shows they commonly have a decrease in brain grey matter, cognitive deficits and anosognosia—a lack of awareness that they are ill. Recovering on one’s own is commonly difficult for an adolescent whose brain is not fully developed and may lack the cognitive ability to challenge negative thoughts, change behavior patterns, and resist urges. Furthermore, they commonly lack the independence adult clients have to purchase and prepare their own food.

On the other hand, parents are there to take care of their children. They can do the heavy lifting. They can be authoritative and require children to eat. It can be difficult for a therapist to develop rapport with a reluctant and resistant adolescent; it is much easier for a therapist to develop a therapeutic alliance with the parents who do want their child to recover. In situations where there are multiple treatment providers, parents can help with the communication between team members as they will likely be seeing them all. Lastly, parents typically buy the food for the household so they have the ability to execute the meal plan.

Eating disorders often take years, not months, to fully resolve. There will rarely be a scenario in which a patient leaves home for a residential setting and comes home “cured.” The reality is that any treatment is only the first stop on the road to recovery–full recovery takes sustained full nutrition and cessation of behaviors for an extended time period and the family, in many cases, can help that happen. So whatever treatment model is used, FBT principles and training are vitally important for families.

  1. Parents are powerful.

In the past, mental health treatment was primarily private; the internet has changed that. Parent support and activist groups such as FEAST, Eating Disorder Parent Support (EDPS), March Against Eating Disorders, International Eating Disorder Action,and Mothers Against Eating Disorders have connected parents, given them access to scientific information that was not available to parents pre-internet, and given them the tools to organize. Social media has increased the pace of this information. Parents have access to evidence-based information and are demanding treatment that aligns with it. If they are shut out from treatment, they will hear from other parents that this is problematic. They may change providers if they are dissatisfied with the treatment their child is receiving

There is no greater love than the love of a parent for their child. To work with parents and empower them to help their children get well is one of the most rewarding aspects of my work.