College, COVID, and Eating Disorders: What You Need to Know

College, COVID, and Eating Disorders [Image description: woman with mask in front of computer]
Photo by engin akyurt on Unsplash

As I’ve talked about in depth here, the transition to college away from home is challenging for most young adults. It is especially fraught for young adults with eating disorders. In that article I provided a College Readiness Checklist for students who are either considering their first move away from home after a history of an eating disorder or returning to college after being diagnosed with an eating disorder. I have learned the hard way. I’ve witnessed the heartbreaking reality of what can happen to students who go away before they’re ready. I may seem stringent, but we’re talking about one of the most deadly mental illnesses and this is your child’s life and future.

I was recently asked whether the same standards should apply in the current climate. I replied that I thought the standards should actually be more stringent given the pandemic. This has been on my mind all summer; now, I am prepared to sound the alarm.

Students with eating disorders of all types—anorexia nervosa, bulimia nervosa, binge eating disorder, and avoidant restrictive food intake disorder (ARFID)—often have a narrow range of foods they are comfortable eating. They often struggle with flexibility.

The pandemic has thrown a wrench—really, a whole toolbox—into the college experience. Among the changes this fall is that most dining halls have pivoted to prepackaged meals. This will be an added challenge for students with eating disorders. Students have already reported that the results are long lines as they wait for food, far fewer food choices, no option to portion their meals themselves, and no option to mix and match. These prepackaged meals may be insufficient in nutrients or energy, especially for students in recovery who have high energy needs.

Add to this the experience of students who are quarantining either due to outbreak or exposure, or as required by the college upon return to campus as a preventative measure.  Most are in dorm rooms without access to a kitchen. Social media has exploded with unfortunate food stories:

These stories are garnering attention, people find it laughable, and the colleges are receiving criticism, but I can only think about how the students with eating disorders are impacted.

Eating disorder recovery requires eating at regular intervals and meals sufficient to maintain recovery. Even a small negative energy balance can increase the risk for relapse in individuals with anorexia nervosa or increase the risk of binge eating for those with bulimia nervosa or binge eating disorder.

Students who are not very stable in their recovery may not be able to handle the current climate. They may not be able to seek additional food if portions are too small. People early in recovery often experience shame about hunger. It could be very triggering to receive portions that are not satisfying. Patients with eating disorders may not be able to advocate for their nutritional needs or do the problem-solving required to make sure the meals are sufficient. Finally, receiving an entire day’s worth of meals at the end of the day would be a natural trigger for those who have struggled with binge eating—or for most people!

Add to this the stress of academics and social issues and the uncertainty about the rest of the semester, and you have a perfect storm for relapse.

If you have any doubts about whether your student may be ready for college under these challenging circumstances, I strongly encourage you to consider keeping them home this semester. If there ever was a time to err on the side of caution, it is now.

With most classes online and social options at college significantly limited, this provides a unique opportunity to keep them home so they have more recovery time under their belt before they have to face such eating challenges. They will not be missing much, and you can work on strengthening recovery so that when the pandemic is over they can return as a healthier student capable of embracing the full college experience. You can use my article—which outlines steps to prepare a student for the challenges of navigating recovery in college— to make sure they are fully prepared when the time is right.

Adjunctive Therapies to FBT: What are the Additional Therapies That May be Added to FBT? And When Should They Be Added?

Image Description: Paper in window that reads "Mindfulness" Adjunctive therapies that go alongside FBT for Eating Disorders
Photo by Lesly Juarez on Unsplash

In a previous post, I have discussed who is typically on an FBT team. In its traditional manualized form, the core team is a therapist, a medical doctor, and the parents. The team often also includes a registered dietitian nutritionist (to guide the parents) and may include a psychiatrist.

It is not uncommon for medical providers unfamiliar with FBT and treatment centers to encourage additional individual therapy for the patient. As I have said previously, this is not always advisable. In FBT, less can be more—the work of the parents may be undermined by an individual therapist who either does not believe in or does not support FBT.

So, I thought it would be useful to describe in greater detail the situations in which I think additional therapies are warranted and which therapies are most aligned with FBT.

FBT is primarily a behavioral treatment, administered by parents. The two therapies I discuss below—Dialectical Behavior Therapy and Exposure and Response Prevention—are also behavioral treatments that can be applied consistently alongside FBT without confusion. By contrast, non-behaviorally-based therapies may create splitting or confusion when offered alongside FBT. In particular, you should be cautious about and avoid therapies that do not reinforce the parents’ authority over eating or introduce different theories about the cause of an eating disorder.

Comprehensive Dialectical Behavioral Therapy

Dialectical Behavioral Therapy (DBT) is a form of cognitive-behavioral treatment (CBT) developed in the 1980s by Marsha Linehan, Ph.D. It was developed to treat chronically suicidal individuals diagnosed with borderline personality disorder and is now considered the most effective treatment for this population. Research has demonstrated its effectiveness for a range of other mental disorders including substance dependence, depression, post-traumatic stress disorder (PTSD), and eating disorders.

DBT stands out as the treatment of choice for people with difficulty regulating emotions—those prone to outbursts of anger and impulsive behaviors such as self-harm and purging. It focuses on the teaching of skills to tolerate emotions and improve relationships.

Be aware that there are many therapists (including us!) who use DBT skills in individual therapy with clients. Some therapists also may offer a standalone DBT skills training group. However, while these individual elements of DBT treatment may be beneficial, comprehensive DBT has a powerful advantage.

For DBT to by comprehensive it must comprise the following components:

  • DBT skills training. This almost always occurs in a group format run like a class. Group leaders teach behavioral skills and assign homework. Groups meet weekly for 24 weeks to complete the curriculum. Skills training consists of four modules: Mindfulness, Distress Tolerance, Interpersonal Effectiveness, and Emotion Regulation.
  • Individual therapy. Weekly sessions run concurrently with the skills training. The individual therapist helps clients apply the DBT skills.
  • Phone coaching. Clients are encouraged to reach out to their individual therapists to receive in-the-moment support applying skills during times of need.
  • DBT Consultation Team to Support the Therapist. All the members of the DBT team (group therapists and individual therapists) support each other in managing these clients who are in high distress.

When a teen is in comprehensive DBT, there is usually a parallel track for the parents that includes a parent skills group and a parent phone coach so that the parents receive help supporting their teen who is learning to apply DBT skills.

Exposure and Response Prevention

Exposure and Response Prevention (ERP) refers to specific CBT strategies used to address obsessive-compulsive disorder (OCD) or similar symptoms. OCD is characterized by distressing and intrusive thoughts and compulsive behaviors in which a person engages to try to reduce the distress. In ERP, the patient is exposed to the distressing situation and encouraged to prevent their compulsive behavior so they can learn to tolerate the distress. Once a person feels capable of handling their distress they will no longer need to engage in the compulsive behavior.

OCD and eating disorders commonly co-occur, and eating disorders can result in compulsive behaviors that require additional attention, such as compulsive exercise or other rituals not related to eating. Patients with eating disorders who engage in these behaviors may benefit from the addition of ERP.

Online FBT in the Face of the COVID-19 Pandemic

FBT Telehealth Covid [image description: back of two women sitting at table with bright windows in background, looking at a laptop]
Kobu Agency, Unsplash
As of March 2020, the advent of the COVID-19 pandemic is bringing dramatic changes to all aspects of our lives.

One of the most significant impacts of social distancing is a change in the mode of delivery of psychological treatment. It appears that most outpatient therapists, dietitians, and medical doctors are moving entirely to telehealth sessions (over the computer). Even many intensive outpatient (IOP) and partial hospitalization (PHP) programs appear to be shifting to a telehealth delivery model. Further, it appears that admissions to residential treatment centers may be reduced and limited to only the most severely medically compromised patients.

As a result of more stringent admission standards as well as travel restrictions and the transition to online sessions, it appears that a larger number of eating disorder patients will be in the home. Fortunately, Family-Based Treatment (FBT) is a treatment naturally poised to fill the gap created by the Coronavirus.

FBT has emerged as a leading therapy with empirical support for the treatment of adolescents with anorexia nervosa who are medically stable. It also shows support for adolescents with bulimia nervosa and young adults with anorexia nervosa. FBT makes the role of parents central to challenging their adolescent’s eating disorder. The hallmark of the treatment is family meals which parents plan, prepare, serve, and supervise. If purging is an issue, they supervise after meals. They implement strategies to prevent purging, excessive exercise, and other eating disorder behaviors. I have often said that FBT is like providing residential treatment in your house for only your child.

FBT is a manualized treatment and usually takes place in approximately 20 weekly sessions with an FBT therapist over a period of about 6 months. A teen should also be monitored by a medical doctor and a dietitian may be involved in helping the parents with meal planning. Fortunately, FBT sessions can be delivered via telehealth.

Telehealth is the delivery of medical or mental health treatment over live video. There are numerous HIPAA-compliant platforms that treatment professionals use such as Doxy, Zoom, and Vsee. Aside from a reliable internet connection and a private setting, there are no additional requirements for telehealth delivered mental health care. Telehealth interventions have been used in various forms since 1972. In general, the research shows that therapy delivered via telehealth can be effective for a variety of problems. Telehealth has been successfully applied to both family therapy and the treatment of eating disorders.

Kristen Anderson, LCSW and colleagues did a study of FBT for adolescent anorexia utilizing telehealth. They utilized the same treatment manual utilized in outpatient studies of FBT with minor variations. For example, instead of weighing the patient in the therapist’s office prior to appointments, the parents weighed the patient at home prior to the session and shared the weight with the therapist. The structure of the sessions was the same, with all family members in attendance. The therapist initiated therapy sessions by video conference and met individually with the patient for a few minutes first, followed by a meeting with the entire family for the remainder of the therapy hour.

Anderson and colleagues found that it was feasible to deliver FBT via telehealth. There were no dropouts over the course of the study and the average number of treatment sessions attended was 18.4. Parents found the treatment to be extremely helpful and participant weight increased significantly. Meaningful improvements were also noted in eating disorder symptoms as well as depression and self-esteem. Anderson and colleagues concluded, “these findings suggest that this method of delivering FBT may be effective for meeting the treatment demands of adolescents living in areas of the country where there are inadequate treatment resources such as nonurban or rural settings.”

Little did they know that throughout the world, social distancing would create a need for FBT delivered by telehealth!

If you are looking for virtual FBT support during this time, we can support families throughout the states of California, New York, and Florida in the US, and we can also provide support for families in some other countries. We use a secure online platform. Please ensure you have a stable internet connection and try to position the video so that all members of the family are in view of the video screen. Learn more about our telehealth services.

If you are looking for FBT by telehealth in other states and countries, please check out the following websites:

The Training Institute for Child and Adolescent Eating Disorders

Eva Musby’s List of Therapists Providing Telehealth

Sources:

Anderson, K.E., Byrne, C., Goodyear, A. et al. Telemedicine of family-based treatment for adolescent anorexia nervosa: A protocol of a treatment development study. J Eat Disord 3, 25 (2015).

Anderson, KEByrne, CECrosby, RDLe Grange, DUtilizing Telehealth to deliver family‐based treatment for adolescent anorexia nervosaInt J Eat Disord2017501235– 1238.

With a Little Help From My Family: Who is FBT For?

 

Who Is FBT For? [image description: overhead view of 5 people eating a meal at a table together]
Photo by Zach Reiner on Unsplash
Family-Based Treatment (FBT) is the leading evidence-based treatment for adolescents with anorexia nervosa and bulimia nervosa. One of the common misbeliefs I hear is that it’s “only for kids or younger teens.” However, I think it has a much wider applicability. In fact, I would say that my FBT training has significantly improved my effectiveness in treating eating disorder patients of all ages.

While there have not been studies of FBT that pull it apart and pinpoint the elements that drive its success, I have a few theories. One of the key underpinnings of FBT is meal support. People with eating disorders experience such crippling anxiety before, during, and after meals that it is no wonder they would do anything they can to avoid eating. When the brain is in a state of overwhelming anxiety, a person with an eating disorder cannot make logical decisions about what to eat—or even to eat. And yet, without eating there can be no recovery. Treatment centers understand this—providing regular meals has been the mainstay of residential and partial hospitalization (PHP) eating disorder treatment for some time. FBT is the in-home parallel to this treatment.

In FBT, parents are charged with nourishing their teens back to health by providing regular nutrient-dense meals and preventing purging, excessive exercise, and other eating disorder behaviors. Parents plan, prepare, serve, and supervise meals and after meals, if purging is an issue. They make all the food decisions. They sit with their struggling child during those terrifying meals and help their teens cope with eating amounts sufficient for them to get well. Over time they return control to their teens, building their capacity to fight the eating disorder on their own. It takes effort and time to change brain pathways that have made eating a scary experience. For this reason, even those patients with eating disorders who go on to higher levels of care usually don’t remain there long enough to develop the autonomous ability to eat enough to sustain recovery. They often continue to need meal support for some time after more intensive treatment.

I think FBT has applicability that spreads wider than just children and teens. There is preliminary evidence of its successful use with transition-age youth up to age 25. Many parents have reported successfully using it with their college-age children. I have used it with this age and the primary variation is that the young adult plays a bigger role in their own treatment. They must agree at least in theory to accept their parents’—or other caregivers’—support. The young adult may choose who will support them during meals. Some, for example, may have a college roommate provide support. Some parents do meal support via FaceTime when the young adult lives far away.

I should clarify that FBT is a manualized evidence-based treatment. To be done with fidelity it must comprise certain components, including a therapist who guides the parents in organizing their strategies to fight the eating disorder. Parents refeeding their child without a therapist’s oversight often state they are “doing FBT”. In this case, it is more accurate to say they are providing FBT-informed or carer-supported feeding. Regardless of the words we use to describe this support and whether or not a therapist is involved, I think it provides a core benefit that we can expand to other populations.

These principles can also be applied to adult treatment. I personally have supported an adult who was in PHP during the day and needed more support with meals outside of treatment hours. I applied the skills I learned in my FBT training to provide meal support to this person. It worked just like it did with teens. Obviously this adult was an active participant in their recovery who asked for my support. This does not mean that I did not encounter the same kind of anxiety and resistance that parents meet around meals.

Take another case —a 20-something patient who still lives with her parents. She has been doing so much better since she asked for help, trading in the restrictive foods she had been eating on her own for several years for family meals prepared by her parents. Or the case of a college student who gets support via FaceTime from her parents who live in another city. When working with young adults with eating disorders who are in loving relationships, we often work to help their significant others develop strategies to support them during meals.

My experience is not unusual. Many other FBT-trained clinicians report success with providing FBT-informed treatment to people from all walks of life. One dietitian has reported great progress working with an employed single adult who moved home to live with his parents so they could support with meals. Sadly, previous providers had pathologized his moving home as a sign of enmeshment. One therapist shared, “I am doing FBT with a 79-year old. She is now in phase 2. She can now go out on dates—she just has to send pictures of her food to her adult children who are taking charge of her recovery and have been in charge of plating her food.”

Many have realized that in-home meal support is a common need for patients, and naturally, it is starting to become a big business with several treatment programs now providing this service. Offered as a service, this individualized meal support can be very expensive. Far more convenient, cost-effective, and loving is meal support provided by parents, other family members, or significant others.

I personally see it as a sign of strength when an adult admits they need more help. There is no shame in needing meal support during your recovery no matter what your age. Moving back home to live with family for support is nothing to be embarrassed by. This disorder robs people of their ability to make decisions around food—outside support is needed by definition. If you struggle around mealtimes with deciding what to eat, only feel safe eating a narrow range of food, have been struggling to make progress in your recovery, or cannot manage urges to purge after eating, you are not alone. You may benefit from the addition of meal support. It may feel scary or embarrassing to ask for help and you may worry you are being a burden. But asking for help is a brave step and you will likely find that there are some people in your life who can do this for you. It sometimes requires a little creativity, but you may find that it makes a big difference in your recovery.

The short answer is: FBT can be for people of any age.

Sources

Getting Your Teen with an Eating Disorder Ready for the First Day Back at School

Getting Your Teen with an Eating Disorder Ready for the First Day Back at School [image description: drawing of two children walking in front of a school desk and chalkboard]
Image by Gerhard Gellinger from Pixabay
It’s almost the first day of school and parents of students with eating disorders have additional concerns to address on top of the usual back to school frenzy. Transitions can be tough for all teens—they are especially difficult for those with eating disorders. However, there are some preparations you can make to help things go more smoothly.

If you have been supervising most meals your teen has been eating over the summer, the shift to a school day brings a significant change in schedule. A considerable portion of your teen’s day will be spent at school. You may need to increase the size of the breakfast your teen will consume before a long day away from home. Practice the breakfasts you will plan to prepare during the school year. Also be mindful that there may be less time for breakfast when you have to get your teen out the door—to ease the transition, have them practice eating within a reasonable time.

During the school day, your teen will typically need lunch and at least one snack. Now is the time to consider how you will handle these meals and snacks. If your teen is early in recovery it may be important to for them to remain under the full supervision of parents for all meals and snacks. If this is the case, you should speak to the school staff now and make arrangements. Most schools will allow a parent to come and have the teen come out and eat lunch in the car and then go back in. Other parents make arrangements for a staff person at the school (favorite teacher, school nurse) to supervise lunch. You may need to do the same thing with a morning snack. You may even consider only sending your teen for part of the school day until meals are going more smoothly.

If your teen is able to eat a meal and or snack on their own, don’t assume that doing so at school will be easy. Any change in location or schedule can increase the challenge for a teen with an eating disorder. I always suggest letting your teen know that if they can’t finish what you’ve packed, they should pack it up and bring the remainder home. It is important for you to know what they couldn’t finish so that you can add food later to make sure they don’t end up with a deficient intake which could lead to relapse. Let them know they won’t be in trouble!

Practice now with the foods you will send to school for lunch. If your teen is accustomed to hot lunches at home, have them practice eating the very foods you will pack in a school lunch to make sure they are comfortable eating those foods. I always suggest packing foods that are easiest for your teen to eat while being adequate nutritionally; save the fear foods for the meals they will be eating at home with you.

If your teen will be eating without supervision, discuss with whom they will eat. Do they have friends they feel most comfortable with? Even better if they have a friend who knows about their eating disorder and they can talk to ahead of time about making plans to eat lunch together. Encourage them to eat with friends who are good eaters.

If your teen will need to have restrictions from physical education, get a note from your treatment team and deliver it to their school.

Finally, I suggest watching closely during times of transition. This means weighing your teen regularly to guard against a significant weight change. Sometimes you can hit a bump and catching a problem early can go a long way in preventing a serious decline.

For more tips on handling your teen’s meals at school, check out Dr. Muhlheim’s book, When Your Teen Has an Eating Disorder.

Participating on an FBT Team

[image description: several chairs arranged in a circle in a room]
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:

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 their 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

 

When Your Child With an Eating Disorder is Sick….

Guest post by Dr. Jennifer Johnson

When Your Child with An Eating Disorder is Sick... [image description: drawing of a person in bed with a thermometer in their mouth and an ice pack on their head]
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.

This Halloween, Serve Candy to Your Teen in Recovery

A Family-Based Treatment (FBT)-approach

Fear Food [image description: woman in witch hat holding bowl of halloween candy]For 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 for families who are working with an FBT approach.

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 [image description: silhouette of a child with arms out in a field]

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 depression-treatment-meds.com 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?

 

[image description: a rusty scale]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

We conducted a survey for parents and I’m pleased to share that the first of our parent papers is here. You can also read the press release 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