Do I Need to Quit X to Stay in Recovery?

Do I Need to Quit X to Stay in Recovery?
Image by Zorro4 from Pixabay

By Carolyn Hersh, LCSW, Staff Therapist

A difficult concept in recovery is knowing when to let go of an activity or even a job that could potentially re-ignite the eating disorder. As a therapist I find myself guiding my clients towards the realization that the sport or career path they had loved so much might be the very thing that holds them back and sets them back up for relapse. It isn’t always an easy decision.

Letting go of something that may have predated the eating disorder can lead to questions as to why it cannot remain in someone’s life in recovery. Many clients in the early stages of eating disorder treatment have to face the fact that they have to stop their sports if they are trying to regain weight or are working on eliminating behaviors that could leave the body physically weak. It is no surprise that once stabilization begins there is an urge to return to previously enjoyed activities. However, returning to these activities could potentially hinder full recovery.

Sports like gymnastics, running, figure skating, wrestling, and dancing are incredibly wonderful. As a figure skater myself, I can attest there is no greater feeling than gliding over the ice. But these same sports, especially at the elite level, can be incredibly demanding on the body. Behaviors required for full recovery can go against what a coach may be preaching to athletes to be in top physical form. What is expected of top athletes could look like disordered eating and poor body mentality from an outside perspective. The eating disorder itself may take what is used to condition a top athlete and manipulate it for its own gain.

It can be difficult to find the balance between a recovered mindset and meeting the demands of a sport or career. With some of my clients in the entertainment industry, there are pressures to look a certain way and fit a mold that their bodies may not be meant to fit. It can be difficult to navigate knowing they need to eat a certain amount of times a day and then have an agent say, “Lose five pounds for this role.”

The hardest decision is when there is a realization that staying in either the sport or career is just too detrimental to your health. It is certainly not easy to walk away from something you’ve put work into. And that can also be said about your recovery. Are you willing to give up a healthy body and mind for a potential chance at a gold medal or lucrative career even if it means killing yourself along the way? I’ve worked with a client who was a dancer who recognized as she was going through treatment that going back into a dance studio would be too triggering. She knew that staring at herself in a mirror and comparing herself to her classmates would lead to restricting her meals. It wasn’t an easy decision to walk away, but she knew there was no way she was in a place to be able to dance without being triggered.

In some circumstances, you may not have to completely quit your previous passion.  You might be able to approach the activity differently. You may not be able to return to a sport as an elite athlete, but you could still engage in the activity at a more recreational level. I’ve seen some of my clients shift from being an athlete to being a coach. Actors going from television and movies to doing local theater.  Sometimes you can still do what you love but it just needs to be re-configured to fit into your recovery lifestyle. For many, it can be comforting to know they can still act or model or run, but just do it less intensively.

You may also have the option of challenging what a sport or career emphasizes as far as body image and diet pressures. There are many models and actors who are embracing bigger bodies and not letting the pressures to lose weight define them. With this option, there is a risk of rejection along the way as we do still live in a culture that overvalues thinness. With that being said, this may be a safe option primarily for those who feel stable in recovery and are able to actively use coping skills to fight urges. If your recovery has reached a place of advocacy this definitely could be a path to take.

Leaving a passion behind or re-defining how it fits into your life can be a huge change. You may feel sad or mad. That’s okay. Ultimately, the decision you make will be the one that supports you in your recovery. If staying in the activity is going to trigger calorie counting, weekly weigh-ins or criticism for not looking a certain way, is it worth it? If you know where the eating disorder thrives then why play with fire? Ultimately, the decision will be based on what will make you healthy and happy and not allow you to compromise with the eating disorder.

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.

Parent Volunteers Needed for Eating Disorder Recovery Research Study

Parent Survey Eating Disorder

 

Mayo Clinic researchers are conducting a study examining parents’ perspectives on eating disorder recovery. We believe that parents have valuable information about their children that can help us better understand eating disorder recovery and improve treatment outcomes. If you are a parent of a child or a teen with an active or past eating disorder, we would appreciate your input by taking an online survey. If you are interested in participating, please click on this link:

Parent Survey of Recovery

You may share this message and link with anyone else or any group that you think might be interested in participating.

This survey is for parents who:

  • Have a child or a teen who was diagnosed with an eating disorder before the age of 18
  • Have access to some data about their child’s heights and weights prior to diagnosis, at diagnosis, and after diagnosis (any measurement system is fine!)

We will be asking you questions about your child’s illness and aspects of recovery, including weights and heights if you have them. If you have growth records, it would be helpful to gather them before taking the online survey. The survey should take about 30 minutes to complete and will be anonymous.

Study Information

Understanding Carers’ Experience in Treatment for Their Child’s Eating Disorder

Principal Investigator: Jocelyn Lebow, Ph.D.

Additional Investigators: Erin Accurso, Ph.D., Leslie Sim, Ph.D., and Lauren Muhlheim, Psy.D.

You are being asked to participate in a research study to understand carers’ experience in treatment for your child’s eating disorder. This invitation is being posted on blogs, social media groups and sent to listservs for parents of children or adolescents who have had/ currently suffer from an eating disorder.  If you agree to participate, you will be asked to spend approximately 30 minutes completing an online survey. We will ask you questions about your experiences during your child’s treatment and your personal definition of “recovery” for your child. The survey is anonymous, so your answers cannot be identified or traced back to you.  The risks and burden associated with this research study are minimal. While there is no direct benefit to you if you choose to take this survey, we believe that this research study will provide a better understanding of carers’ perspectives of their children’s treatment and recovery, with the goal of improving treatment and outcome assessment.  Please understand that this is a voluntary study and your current and future medical care at Mayo Clinic will not be affected by whether or not you participate. Contact the Mayo Clinic Institutional Review Board (IRB) to speak to someone independent of the research team at 507-266-4000 or toll-free at 866-273-4681 if you have questions about rights of a research participant. Thank you for sharing your time and expertise.

 

The researchers

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!

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.

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

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

Dear Family Member,

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

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

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

 

However, did you know that:

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

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

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

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

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

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

Here’s what I can do:

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

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

To learn more, I suggest reading the following articles:

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

Are We Setting Recovery Weights Too Low?

Is Weight Suppression Driving Your Binge Eating?

How Health at Every Size Can Help With Eating Disorder Recovery

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