This Halloween, Serve Candy to Your Teen in Recovery

A Family-Based Treatment (FBT)-approach

Fear FoodFor teens with eating disorders, Halloween can be scary for the wrong reason: the candy! Most teens with eating disorders are only willing to eat a restricted range of foods. Expanding this range is an important goal of treatment, with the reintroduction of fear foods being a key step. Candy tends to be high on the fear food lists of many teens.

Halloween presents an ideal opportunity.

A Taste of Recovery

Most teens in America are excited for Halloween and its bounty of candy. By incorporating some candy during your teen’s Halloween week you can help them approximate the lives of teens who do not have eating disorders. This step can give them a taste of the full life you want for them—a life where they are unencumbered by food restrictions, a life where they can enjoy all foods, a life where they can travel the world confident that they will easily be able to meet their nutritional needs, and a life where they won’t feel the need to shun social events for fear of facing the foods there.

I know that I’m painting a beautiful picture and that this is easier said than done. Teens with eating disorders will deny that the disorder is driving their food preferences. Instead, they claim they simply don’t like candy anymore. Or that candy was the preference of a child and since then their palates have matured. But don’t believe them—you have crucial parental memory and knowledge. You know which foods your teen actually liked a few years back. You also probably know the foods on which he or she binged if they binged. And it is not credible that any teen really hates all candy!

Especially if your teen had a great many fear foods, you may already have experience reintroducing some of them. But once meals start going more smoothly, some weight has been restored, and binges and purges have subsided, many parents are reluctant to push further. Why rock the boat when your teen seems to be doing well? You may be wondering: Is candy really necessary?

In fact, this Halloween is exactly the right time to introduce candy.

Exposure

It is much easier to introduce fear foods before your teen is completely independent in their eating. Right now, you are still overseeing meals and your teen does not yet have their independent life back. Pushing the issue of fear foods becomes more challenging when your teen has regained most of their freedom.

When you introduce fear foods to your teen, you will probably feel anxious. Your teen will too. You may even feel like you are going back a step. This is how exposure works—it is supposed to raise your teen’s anxiety. When your teen avoids these fear foods, their anxiety decreases, reinforcing the avoidant behavior and justifying the anxiety response. This perpetuates both the emotion and the behavior. But the food is not truly dangerous—if the teen were to eat the food, they would learn that nothing catastrophic happens. In exposure, the teen is required to eat the food, and the anxiety response shows itself to be baseless. With repeated exposure, the brain habituates, learns that the food is not harmful, and loses the anxiety response.

Exposure works through repetition over a sustained period of time—not all at once. It’s likely that each food on your teen’s feared list will need to be presented several times before the thought of eating it no longer causes extreme anxiety.

You may feel that requiring your teen to eat candy is extreme. However, remember: the healthy part of your teen probably wants to eat candy, but the eating disorder would beat them up if they ate it willingly. By requiring your teen to eat candy, you are actually granting your teen permission to eat it—permission they are unable to grant themselves. After recovery, many teens report that they really wanted the fear food but were too afraid—it was only when their parents made them eat it that they were able to.

And I would argue that fearlessness in the face of candy is important for your child. So be brave about facing potentially increased resistance by your teen and model facing your own fear.

Here’s How to Incorporate Candy During Halloween:

  1. Choose a few types of candy based on your teen’s preferences about three years before they developed their eating disorder. (If you can’t remember, ask one of their siblings or just pick a few options, maybe one chocolate-based and a non-chocolate alternative.) Make your choice based on providing your teen with the typical American teen experience. (American teens will typically collect a lot of candy on Halloween, have a few pieces that night, and then have candy as snacks a few times during the following week.)
  2. You may choose to tell your teen about the candy ahead of time or not. Some families find that telling teens about exposure to fear foods ahead of time is helpful; other families find that it is better to just present a fear food without warning. But note that you are not required to ask their permission; FBT is a parent-driven treatment.
  3. Serve a single serving of candy during dessert or snack a few times during the week of Halloween. Plan carefully and be thoughtful. Do this with the same resolve that you use when you serve them any starches or proteins. You may want to introduce the candy on a day when you feel more confident, will have more time to manage potential resistance, or can be sure a second caregiver will be present. You may not want to present candy, or any fear food, before an event that you are not willing to miss in case you encounter an extreme reaction.
  4. If your teen binges or purges, make sure to sit with them for an hour after they eat the candy.
  5. Plan for what will happen if your teen refuses to eat the candy. For example, will you offer something else instead and try the candy again tomorrow? Offer a reward for eating the candy? Create a consequence for noncompletion? Whatever you decide, be consistent and follow through.

If you do this-this year, there is a good chance that by next Halloween your teen will be eating candy independently!

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.

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

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.

How To Choose A Supplemental Nutrition Shake

Nutritional Supplements for Eating Disorder Recovery - Katie Grubiak, RDN By Katie Grubiak, RDN

In a previous post, we discussed the role of supplemental nutritional shakes in eating disorder recovery. Sometimes, patients in recovery will be unable to restore their nutrition entirely with food. In these cases, the use of supplements can be invaluable. If you or a loved one are restoring nutrition from an eating disorder, you should be under the care of a medical doctor (MD) & registered dietitian nutritionist (RDN).

In this post, we will continue the discussion about supplements, comparing different supplement brands based on caloric density per ounce, macronutrient comparison (fat, carbohydrates, protein), and label advertising. Lastly, we’ll rate them for taste and palatability.

Caloric Density

Substantial caloric density per ounce is the most important factor in the selection of a liquid supplement. To optimize replacing calories in a meal, we recommended selecting a product that delivers at least 300 calories per 8- to 11-ounce serving. Any under-300 calorie product is insufficient to replace a meal or even a majority of a meal for someone in recovery from an eating disorder, and should instead be treated as a calorically dense beverage to be added alongside a meal or snack. Alternatively, multiple shakes—2 or 3—can together replace a meal.

Serving size is important. Any product that comes in serving sizes larger than 11 ounces has the risk of being too filling—someone recovering from an eating disorder may not finish it, meaning that the precious calories will never be delivered.

Macronutrient Comparison

A comprehensive liquid supplement should be evaluated against the same dietary recommendations as a normal meal. The caloric nutrients or “macronutrients” that we hope to balance in a meal are protein, carbohydrates (carbs), and dietary fat. The goal is that supplements have a macronutrient profile similar to a balanced plate.

Macronutrients are often measured in terms of “exchanges”:

  • Fats: One dietary fat exchange equals 5 grams of fat. A recovery meal is often recommended to include at least two to four fat exchanges. Aim for 10-20 grams fat in an 8-11 ounce supplement.
  • Carbohydrates: One carb exchange equates to 15 grams of total carbohydrates. Meals in recovery are recommended to include at least two to four carb exchanges. Aim for 30-60 grams total carbs in an 8-11 ounce supplement.
  • Protein: One ounce of meat, chicken, or fish equates to one protein exchange, or 7 grams of protein. Meal building suggestions for animal or vegetarian protein sources are usually anywhere from two to four exchanges. Aim for 14-28 grams protein in an 8-11 ounce supplement serving.

I don’t advise comparing micronutrients—the trace amounts of added vitamins and minerals—among products because this is not important when the goal is increased intake. Instead, stay focused on the caloric constitution of a supplement including its macronutrient profile so that the primary objective of ensuring weight gain or maintenance is achieved.

Ingredients

Products labels can sometimes bear so much “health” messaging that it can be difficult to pull out what is truly important. One product label claims a better, more natural ingredient; another vouches it is more “non”-something than any other product…. This can get confusing!

To streamline the process, we recommend starting off with identifying whether or not the product is dairy free. This is an important concern for people who keep Kosher, are lactose intolerant, or have a milk protein allergy. Look specifically to see if the product says dairy-free, or suitable for lactose intolerance (might have dairy/lactose but in low concentrations). If you have a milk protein allergy, specifically screen for such ingredients as milk protein concentrate, casein (all forms), whey (in all forms), & milk (in all forms).

Second: identify whether or not gluten is an issue for you. You only need to do this if you have a known gluten issue diagnosed by a medical professional—for most people, gluten is a harmless component of a normal diet. If gluten is an issue, check to see whether the supplement is labeled gluten-free.

Third: check the label for any other known food allergy ingredient.

Last, check the “Nutrition Facts” on the back label for calorie and macronutrient comparison. I suggest stopping there and not diving into a deeper ingredient comparison. Any scrutinizing beyond this is unimportant and likely giving the eating disorder too much power. In the end, this kind of label attention diverts from the true function of the use of supplementation in eating disorder recovery—to replace calorically a substantial meal with a concentrated liquid when all or partial meal cannot be consumed.

To reiterate, your primary considerations when choosing a supplement are caloric density and macronutrient profile. Weight maintenance and weight gain comes from calories—not from the presence of more natural ingredients or the absence of processed ones. It’s understandable to want to use a supplement that checks off every box marked “healthy”—but this can add fuel to the eating disorder’s fire.

Labeling is part of the product—you can’t avoid it. But you don’t have to let the eating disorder make choices based on irrelevant labeling information that appeases its instincts. When you provide a supplement to a family member in recovery, you can always remove or cover up the label, or simply pour it into a cup, to reduce a triggering reaction.

 

EDTLA reviewed a number of supplement brands and taste-tested some of them. Taste was rated on a scale of 1 (yuck) to 10 (yum). Each brand has numerous product variations in its lineup—we were not able to review every variety. Note that many drugstore and grocery chains carry their own store brands – of these, we included Rite Aid, CVS, and Kroger in our analysis and tasting.

 

Ensure Product Family

Ensure brand nutritional supplementsEnsure Original

Product positioning: #1 doctor recommended brand, kosher, gluten-free, suitable for lactose intolerance, not for people with galactosemia

Calories: 220 calories per 8-ounce serving

Macronutrients: 6 g fat, 33 g total carbs, 9 g protein

Ingredients: Carbohydrate sources: corn maltodextrin, sugar. Protein sources: milk protein concentrate. Fat sources: canola oil, corn oil

EDTLA TASTE RATING: Not tasted

Ensure Plus

Product positioning: 50% more calories than Ensure Original, gluten-free, suitable for lactose intolerance, not for people with galactosemia, balanced nutrition to help gain or maintain a healthy weight, kosher, gluten-free, suitable for lactose intolerance

Calories: 350 calories per 8-ounce serving

Macronutrients: 11 g fat, 50 g total carbs, 13 g protein

Ingredients: Carbohydrate sources: corn maltodextrin, sugar. Protein sources: milk protein concentrate, soy protein isolate. Fat sources: blend of vegetable oils (canola, corn).

EDTLA TASTE RATING: Chocolate flavor 8; Strawberry flavor 7; Vanilla flavor 8

 

Ensure Enlive

Product positioning: designed to help rebuild your strength and energy from the inside, with an ALL-IN-ONE blend to support your health. The label claims bone, muscle, heart, digestion, & immune support, flavored-natural & artificially flavored, suitable for lactose intolerance, gluten-free, kosher, not for people with galactosemia

Calories: 350 calories per 8-ounce serving

Macronutrients: 11 g fat, 44 g total carbs, 20 g protein

Ingredients: Carbohydrate sources: corn syrup, sugar, short chain fructo-oligosaccharides. Protein sources: milk protein concentrate, sodium caseinate, soy protein isolate, whey protein concentrate. Fat sources: corn oil, canola oil.

EDTLA TASTE RATING: Strawberry flavor 8

 

Ensure Clear

Product positioning: great-tasting, clear liquid nutrition drink that contains high-quality protein and essential nutrients, fat free, gluten-free, suitable for lactose intolerance

Calories: 200 calories per 6.8-ounce serving

Macronutrients: 0 g fat, 43 g total carbs, 7 g protein

Ingredients: Carbohydrate sources: sugar, corn syrup solids. Protein sources: whey protein isolate

EDTLA TASTE RATING: Apple flavor 8. Also available in mixed berry (not tasted)

 

Boost brand nutritional supplementsBoost Product Family

Boost

Product positioning: a great-tasting nutritional drink as a mini-meal or between-meal snack with 26 vitamins & minerals, 3 g of fiber, & 10 g of high quality protein, gluten-free, suitable for lactose intolerance, not for individuals with galactosemia, kosher

Calories: 240 calories per 8-ounce serving

Macronutrients: 4 g fat, 41 g total carbs, 10 g protein

Ingredients: Carbohydrate sources: corn syrup, sugar, fructo-oligosaccharides. Protein sources: milk protein concentrate, soy protein isolate. Fat sources: vegetable oil (canola, high oleic sunflower, corn)

EDTLA TASTE RATING: Not tasted

 

Boost Plus

Product positioning: helping to achieve and maintain a healthy weight, 3 g fiber, 26 vitamins & minerals, gluten-free, suitable for lactose intolerance, not suitable for people with galactosemia, kosher

Calories: 360 calories per 8-ounce serving

Macronutrients: 14 g fat, 45 g total carbs, 14 g protein.

Ingredients: Carbohydrate sources: corn syrup, sugar. Protein sources: protein concentrate, soy protein isolate, fructo-oligosaccharides. Fat sources: vegetable oil (canola, high oleic sunflower oil, corn)

EDTLA TASTE RATING: Chocolate flavored 6; Vanilla flavored 5

 

Boost Breeze

Product positioning: a convenient source of additional protein & calories in a fruit-flavored drink, suitable for lactose intolerance, gluten-free, kosher, not for individuals with galactosemia

Calories: 250 calories per 8-ounce serving

Macronutrients: 0 g fat, 54 g total carbs, 9 g protein

Ingredients: Carbohydrate sources: sugar, corn syrup. Protein sources: whey protein isolate (milk)

EDTLA TASTE RATING: Peach flavored 7 (“like peach Snapple”); Berry flavored 6 (“like Hi-C”), Orange flavor 3 (“medicine like”)

 

Store brand nutritional supplementsStore Brands

Rite Aid Original Nutrition Shake

Product positioning: advertised compare to Ensure, natural & artificial flavors, gluten free, suitable for lactose intolerance, not for people with galactosemia, kosher

Calories: 220 calories per 8-ounce serving

Macronutrients: 6 g fat, 33 g total carbs, 9 g protein.

Ingredients: Carbohydrate sources: corn maltodextrin, sugar, sucromalt. Protein sources: milk protein concentrate, soy protein isolate, pea protein concentrate. Fat sources: soy oil, canola oil

EDTLA TASTE RATING: Chocolate flavored 6

 

CVS Nutritional Shake

Product positioning: – naturally & artificially flavored, made with real diafiltered milk, gluten free, suitable for lactose intolerance, kosher

Calories: 220 calories per 8-ounce serving

Macronutrients: 6 g fat, 33 g total carbs, 9 g protein.

Ingredients: Carbohydrate sources: sugar, brown rice syrup, corn maltodextrin, sucromalt. Protein sources: milk protein concentrate, soy protein concentrate. Fat sources: soy oil, canola oil, corn oil. Diafiltered skim milk contributes to carbs & protein amount simultaneously.

EDTLA TASTE RATING: Milk chocolate flavor (not tasted)

 

Kroger Nutrition Shake Fortify Plus

Product positioning: -advertised as to help gain or maintain a healthy weight & kosher, naturally & artificially sweetened milk chocolate

Calories: 350 calories per 8-ounce serving

Macronutrients: 11g fat, 50 g total carbs, 13 g protein.

Ingredients: Carbohydrate sources: corn maltodextrin, sugar. Protein sources: milk protein, soy protein isolate. Fat sources: corn oil, canola oil.

EDTLA TASTE RATING: Chocolate flavored 6

 

Orgain brand nutritional supplementsOrgain Organic Nutrition Product Family

Product positioning: weight management, meal replacement, or for medical needs;-also gluten-free, soy-free, non-GMO, high protein, organic & kosher.

Complete Protein Shake-Sweet Vanilla Bean

Designated as Grass Fed Dairy

Calories: 250 calories per 11-ounce serving

Macronutrients: 7 g fat, 32 g total carbs, 16 g protein

Ingredients: Carbohydrate sources: organic brown rice syrup, organic cane sugar, organic rice dextrins. Protein sources: organic grass fed milk, protein concentrate, organic whey protein concentrate. Fat sources: organic high oleic sunflower oil

EDTLA TASTE RATING: 4

 

Plant Based Protein Shake-Smooth Chocolate

Designated as Vegan & Dairy Free

Calories: 220 calories per 11-ounce serving

Macronutrients: 6 g fat, 25 g total carbs, 16 g protein.

Ingredients: Carbohydrate sources: organic rice dextrins, organic cane sugar. Protein sources: organic brown rice protein concentrate, organic hemp protein concentrate, organic chia seeds, organic flax powder. Fat sources: organic high oleic sunflower oil

EDTLA TASTE RATING: 4

 

Kate Farms Product Family

Product Positioning: certified gluten free, free of common allergens (no milk, wheat, soybeans, peanuts, tree nuts, eggs, fish, shellfish), corn-free, 18 g plant based protein, MCT oil in some varieties, 29 superfoods, kosher. Contains organic ingredients. Kate Farms is a family start-up company based on the love and re-nourishment of a daughter with Cerebral Palsy. This is a great choice if looking for a multi-tiered caloric supplement company that is non-dairy and has alternative macronutrient sources than the mainstream brands. Kate Farms Core Essential Formulas may be covered by insurance for oral use and tube feeding. Coverage depends on the patient’s diagnosis and insurance plan.

 

Komplete

Calories: 290 calories per 11-ounce serving

Macronutrients: 8 g fat, 41 g total carbs, 16 g protein

Ingredients: Carbohydrate sources: brown rice syrup solids, organic agave syrup. Protein sources: organic pea protein, organic rice protein. Fat sources: organic high oleic sunflower oil

EDTLA TASTE RATING: Available in Chocolate/Coffee/Vanilla (not tasted).

 

Core Essentials Standard Formula 1.0 cal/mL:

Calories: 325 calories per 11-ounce serving

Macronutrients: 10 g fat, 41 g total carbs, 18 g protein

Ingredients: Carbohydrate sources: brown rice syrup solids, organic agave syrup. Protein sources: organic pea protein, organic rice protein. Fat sources: organic high linoleic sunflower oil, medium chain triglycerides (MCT) derived from coconut oil.

EDTLA TASTE RATING: 4 chocolate flavor, 2 vanilla flavor “chalky”

 

Core Essentials Peptide Plus 1.5 cal/mL:

Calories: 500 calories per 11-ounce serving

Macronutrients: 25 g fat, 41 g total carbs, 24 g protein

Ingredients: Carbohydrate sources: brown rice syrup solids, organic agave syrup. Protein sources: organic hyrolyzed pea protein, organic rice protein. Fat sources: organic sunflower oil, medium chain triglycerides (MCT) derived from coconut oil, organic flax seed oil.

EDTLA TASTE RATING: Plain flavor 1 (perhaps best not to drink alone but add to a shake or mix in foods for extreme nutrient density or just use in tube feedings)

 

Other Brands/Products

Benecalorie brand nutritional supplementsBenecalorie

Product positioning: calorie and protein food enhancer, mixes easily into most foods & beverages including milkshakes/yogurt/hot cereal/mash potatoes, unflavored, suitable for lactose intolerance, gluten-free, kosher, not for people with galactosemia, not recommended for tube feeding (not a liquid)

Calories: 330 calories per 1.5-ounce serving

Macronutrients: 33 g fat, 0 g total carbs, 7 g protein

Ingredients: Carbohydrate sources: no carbohydrates but does contain the artificial sweetener sucralose. Protein sources: calcium caseinate from milk. Fat sources: high oleic sunflower oil

EDTLA TASTE RATING: By itself: not tasted. Mixed into oatmeal as suggested 7 (“not a significant change in taste or texture of oatmeal”)

 

I hope this review is helpful and provides encouragement to venture into supplements if recommended by your treatment team.

The Use of Supplemental Shakes in Eating Disorder Recovery

By Lauren Muhlheim, PsyD and Katie Grubiak, RDN

Nutritional supplements in eating disorder recovery - shakes

Restoring nutritional health is an essential part of recovery from any eating disorder, including anorexia nervosa, bulimia nervosa, and binge eating disorder. The process of nutritional rehabilitation involves eating sufficient food at regular intervals, which reestablishes regular eating patterns and allows the body to recover. In this post, we will discuss the role of supplemental nutritional shakes in eating disorder recovery. In our next post, we will taste-test the different brands and formulations of nutritional shakes on the market, share our opinions, and help you decide which to buy if you are considering using shakes in your or a loved one’s recovery.

Nutritional Rehabilitation

Since many eating disorder patients – even those who are not at low weights – can be malnourished, renourishment is an important step. Ideally it should take place under the guidance of both a medical doctor and a registered dietitian nutritionist (RDN) who can develop a meal plan uniquely suited to the needs of the patient.

Repairing a depleted body can require a very high caloric intake. The recommended rate of weight gain is usually one to two pounds per week – for many of our clients, this translates into required dietary intakes of 3000 to 5000 calories per day. However, it can be unsafe to increase intake to this level immediately due to the risk of refeeding syndrome, a serious condition caused by introducing nutrition to a malnourished person. Calories need to be increased incrementally under a doctor’s supervision and with an RDN’s guidance.

Getting Sufficient Intake

Many people with eating disorders will be able to restore their nutrition entirely with food. And while we always think it is best for patients to eat real food, and that is the ultimate goal, there are many situations in recovery in which the use of supplements can be invaluable. Sometimes, especially early in recovery, it can be hard for patients to get in enough calories via food alone.

During early recovery, when early fullness is a common issue, fortified shakes may be easier both physically and mentally to consume than food. And when getting in enough calories by eating calorically dense foods is too tough, we think the use of supplements is a perfectly good alternative. It is always better than not eating enough.

Supplement Products

Nutritional supplements, made by a number of different companies, contain nutrients in a calorically dense liquid or “shake.” Six to eight ounces of these products typically have between 200 and 350 calories, depending on the brand and formulation. Many large supermarket and drugstore chains sell shakes under their own names, some of which we tested as well. The best-known brands sold commercially in the US are Boost and Ensure, which come in different flavors and are usually sold in plastic bottles. The main lines are dairy based, but there are non-dairy versions known as Boost Breeze and Ensure Clear, which are packaged in juice boxes and may be ordered online. There are formulations with even higher caloric density (e.g. Boost Plus). In hospital settings, these products are used for patients who are unable to eat – following a stroke, for instance – or need extra nutrition. They can also be used in tube feeding.

In recent years, additional companies have emerged to compete with the Boost and Ensure brands. Several companies are developing products emphasizing organic and natural ingredients. Not all of these products are designed with the same goal in mind. Some are in fact marketed to a clientele that is concerned about losing or maintaining weight through low-calorie, “healthy” meal or snack replacement. These products could inadvertently displace foods, beverages, and other liquid supplements that would be much better suited for appropriate weight gain and eating disorder recovery, all the while delivering messages that could reinforce eating disorder thinking. We recommend thinking carefully about your objectives, researching the products you plan to buy, and proceeding with caution.

How to Use Supplements

Supplements taste better chilled than at room temperature. They can be added to a meal in lieu of a lower-calorie beverage, drunk as a standalone snack, or used in the preparation of oatmeal, smoothies, or milkshakes. They can be consumed more quickly than solid foods and can serve for quick convenient nutrition, especially on the go.

They can also be used as replacements. In some eating disorder residential treatment centers, three supplements would be considered the nutritional equivalent of a meal. A patient who refused to eat altogether would be offered three nutritional drinks; one who ate half the meal would be asked to drink two; one who ate most of the meal but didn’t finish would be asked to top off with a single supplement. Parents refeeding children at home can decide whether to offer an alternative meal or liquid replacement when a child refuses to eat or finish a meal or snack.

Instead of bringing home a multitude of varieties, select one supplement brand in perhaps one or two flavors. Limiting unnecessary choice will head off an opportunity for the eating disorder to assert itself in the form of pickiness.

Take Home

The take-home message: supplemental shakes can be a great tool for ensuring adequate nutrition during the refeeding process in eating disorder treatment. Finding the supplement best suited to you or your loved one from among the available options can be overwhelming. Substantial caloric density is your first concern – but finding one that suits your palate is essential to making sure it goes down. Fortunately, the major brands have made a variety of flavors and textures from which you can choose.

We look forward to sharing further recommendations on the nutritional aspects as well as the results of our taste test. We taste-tested many so you don’t have to. Stay tuned as our follow-up blog will delve into further supplement guidance.

Checking Our Own Weight Biases as Parents

 

Weight bias parentingWeight bias is a preference for thinness. In the words of psychologist Ashley Solomon, Psy.D., CEDS, “Weight bias is insidiously interwoven into the fabric of our culture.”

Like many of us, I grew up in a family that possesses a great deal of weight bias. When I gained weight just before puberty my mother put me on diets. My paternal grandfather bribed me to lose weight with the offer of a car. I realize my family members meant well. They stated at the time they were worried I would not be well-liked if I was overweight. At 101 years of age, my maternal grandmother still weighs herself daily and credits the diet she started in high school as the cause of my grandfather falling in love with her.

I have already recounted how I helped my older daughter gain weight when she fell off her weight curve at the age of 12—despite her pediatrician’s misplaced admiration, “You’re just how we all want to be,” (75%ile for height and 25%ile for weight [= thin for your height])” My son and younger daughter gained weight before their growth spurts, which led to that same pediatrician warning me about weight gain and risk of obesity for the two of them. This succinctly illuminates our culture’s weight bias: obesity is a far greater concern than anorexia nervosa.

Now let’s fast-forward to 2 years after the obesity warning for my younger daughter. Nearing the end of her height growth spurt, she has fallen off her weight curve. What is an FBT-trained professional therapist and enlightened mother to do?

She is about 10 pounds below where she should be according to the weight graphs (ignoring the single spurious plot point when I got the obesity warning). She is definitely slender. She does take a medication that could reduce appetite. However, even when she doesn’t take it, she has a small appetite. She does not show any other signs of weight or body concern, eats a range of foods, and is not very active (unlike her older sister when I intervened on her behalf to restore weight).

I notice my admiration for her current shape. I notice the temptation to leave her alone and let her remain on the thin side. After all, my son has gained weight now that he is no longer in high school sports. I notice a stronger urge to react to his food choices than I did when he was thinner. And with some larger relatives in their genetic heritage, I have had the fleeting thought that I would rather keep my daughter thin. WHAT?! I caught my thoughts unconsciously falling into programmed family and societal beliefs that I do not actually agree with on an aware and conscious level.

I examine my feelings and beliefs about what weight gain means for my daughter. I quickly recognized my over-valuing of her slenderness and my own projected anxiety about her potentially being larger. After questioning her pediatrician, who is, not surprisingly, unconcerned, and obtaining a print-out of her growth and weight curves, together we (my daughter and I) settled on adding a daily liquid supplement and mild encouragement to eat more. And, my daughter seems to feel it is a fun challenge.

I do what I ask the families I work with do, which is challenge the bias that thin is better and focus on keeping my daughter on track on her own weight curve, which I know is healthiest for her long term.

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.

Presentation at NEDA 2015 conference

Lauren and Katie presenting NEDA 2015

Katie and I had the honor of presenting in the Individual, Family, and Friends track at the National Eating Disorder Association Conference in San Diego yesterday.  The title of our talk was:  Family Based Nutrition Therapy:  Creating A Supportive Environment.  It was a chance to share the way we work to support families who are helping children with eating disorders.

Here are some of the key points of our talk:

FBT Insights from the Neonatal Kitten Nursery

Parents feed children in FBT Kitten CollageI recently began volunteering at the Best Friends Neonatal Kitten Nursery. Best Friends Los Angeles opened its neonatal kitten nursery in February 2013.  The nursery is staffed with a dedicated coordinator and supported by volunteers who sign up for two hour feeding shifts 24 hours a day to help the kittens grow and thrive.

If you were an abandoned kitten in the Los Angeles area, or even a kitten with a mother, you’d be lucky to make your way to the Best Friends Neonatal Kitten Nursery.

The most vulnerable animals in the Los Angeles shelters are newborn kittens, often abandoned at birth, or turned into shelters from accidental litters. Because the kittens cannot feed themselves, they will die without someone to bottle feed them.

In the mommy and me section of the nursery, mothers nurse their kittens. In the other sections, kittens are bottle-fed, tube-fed, or syringe-fed until they are able to eat gruel on their own. Kittens are weighed before and after each feeding. If their weights are not steadily going up, the interventions increase. They are very fragile at this age.

The other night, the nursery coordinator, Nicole, was tube-feeding some kittens who were ill. As she explained, they were feeling too sick to eat on their own. Although acknowledging that her tube feeding was making them angry, Nicole was resolute. No kitten would starve to death on her watch. Of course, I connected this back to my families working to re-feed their children with anorexia.

In the neonatal nursery, we don’t spend time thinking about why the kitten is not nursing or eating in the expected fashion. If they are sick, they are treated for that, but in the meantime, every kitten is fed around the clock and those who don’t have mothers are bottle fed, those who won’t nurse from their mothers (often when they are too congested) are tube-fed, and those who won’t eat gruel independently are syringe-fed.

How does this relate to parents doing Family Based Treatment (FBT) for Eating Disorders with children who have Anorexia?

Of course, parents do not literally force food down human children’s throats, but they do set up contingencies to require eating even if the child doesn’t feel well and even if they rail and resist and are angry about it.

This is the heart of FBT Phase 1. When children are not able to eat on their own (due to an eating disorder) parents are instructed to nourish their starving child back to health. Parents need to step in and help their children make steady weight gains until they are able to eat on their own. Parents need to be resolute and not worry about their children being angry at them. They also should not spend time exploring why their child is not eating.

For further information on parental direction over eating in FBT, check out this prior blog post.