Childhood Eating Disorders Blog

Dear Readers,

It’s been getting a little academic on this blog the past few posts, so we thought we’d lighten it up a bit and talk about a new online eating disorder self-help resource that launched recently. It’s called Iceberg, and you’ll find it online at: www.eatingdisorderselfhelp.com.

The website originates out of the Marino Therapy center in Dublin, Ireland, which means there are a few stylistic differences you’ll have to get used to, such as our common nemesis going by the name “eating distress” instead of “eating disorders.” Everything is more subdued and polite in the United Kingdom, even eating disorders, which we know to in fact be brutal and deadly. In a way, it’s a less harmful name, though because one is not stigmatized as “disordered,” i.e. abnormal, but instead considered to be in a heightened state of discomfort.

Another quirky thing about the site is its beautiful homepage image of a very white iceberg, which looks just like a mound of delicious whipped cream. Could this be designed to subliminally attract the eating-disordered community? It doesn’t matter because the content is solid and helpful. I liked the stories of recovery under “tips and inspiration,” and there is information for teachers, coaches and athletes, family and friends. If you want to hear more voices of others battling eating disorders, the moderated posting system might be to your liking. The iceberg, by the way, is supposed to be a metaphor for the way eating disorder symptoms are just the tip of the iceberg, a telltale sign that there are underlying issues at play.

Marcia calls Iceberg the European version of America’s esteemed something-fishy.org, which always bears mentioning and touting. This site has a very good selection of articles by professionals, if you are looking for trustworthy advice. If you are a doctor, it will make you cringe, but there is an exhaustive list of really stupid things doctors have said to patients, too. If you are a doctor just entering the field, this would be a good page to read to avoid damaging future patients. The page even begins with a disclaimer at the top telling doctors no offense was intended by publishing ignorant comments made by medical professionals. It seems that Americans are just as sensitive and polite as our counterparts across the Atlantic.

Take care,

Nancy and Marcia

Dear Readers,

            In my last post, the first of a two-parter, I outlined a form of meal-support therapy developed at the British Columbia Children’s Hospital by Dr. Pierre Leichner and his colleagues. This continuation of the post details how the team translated their program into a method that parents could use at home.  

            Dr. Leichner and his staff then went back to Intensive Treatment Service patients who had successfully recovered using the meal support program and asked them, “If you had to tell family and friends what was helpful to you and what was not, what would you tell them?” The results of these interviews formed the basis of a BC Children’s Hospital instructional DVD, “Meal Support Therapy for Friends and Family.” Basic ideas such as how to handle family conflict when it erupts at the table, or how parents should and shouldn’t encourage their child to eat are covered in the DVD.

            Before a patient is discharged the ITS program conducts one to four “conjoint meal support” sessions with parents and child. Dr. Leichner admits that some families are too enmeshed to successfully practice meal support at home, but notes that this is only in a minority of cases. Most families are able to continue the positive changes at home. He points out that the more entrenched the disorder, the longer it may take for the family to get on track, a fact which argues for families getting meal support training as early as possible in the child’s recovery process. 

            Although there is some overlap of his meal support program with Family Based Training, Dr. Leichner says, “We don’t use the same language, “parent in charge,” or “the power of language.” It’s not about finding causality. It’s more about helping people with the skills of the family meal. It’s more like rehab, giving people the tools, coaching them without necessarily getting into any kind of causality. We emphasize collaboration.”      

            Just as in the clinic, parents sit down with their child before the meal to anticipate what might happen, possible difficulties and how they might respond to them.  “Each family has to find the bottom line, something below which is not acceptable,” explains Dr. Leichner. Not eating at all, for example would be unacceptable. Other negotiated bottom lines could be the content of the meal or the length of time the child will sit at the table. A dietitian aids the family in setting up a meal plan, and can offer suggestions on food choices.

            The key to family meal support, says Dr. Leichner, is patience. Recovery doesn’t happen overnight, and there will be ups and down, progress and relapses. He urges parents to find their own sources of help from a network of friends, family members and professionals so they do not feel alone in their efforts.

            To order a copy of the BC Children’s Hospital DVD “Meal Support Therapy for Family and Friends,” click here. Dr. Leichner reports that the DVD and manual have been translated into French.

Take care,

Nancy

Dear Readers,

            While researching the article, “Family Based Treatment: New Directions,” which appeared in the Summer 2009 edition of Eating Disorders Recovery Today newsletter, I gathered more good material than I had space for. So I’m devoting some blog posts to interviews that didn’t make it into the article. This one, on Dr. Pierre Leichner’s  work with meal support for kids with eating disorders, will be a two-parter, so stay tuned for the next installment!

            For those of you who are not familiar with Family Based Treatment (FBT), also known as the Maudsley approach, it emerged about twenty years ago from researchers at the Maudsley Hospital in London. A central feature of FBT is that parents, who were once blamed for the child’s disorder, become an integral part of the recovery process through refeeding their child at home. This method, though demanding on the parents, has been shown in studies to be highly effective, and is growing in popularity in the United States.

            My goal in the article was to see how Maudsley is being refined and adapted in the U.S.  I found a number of examples of such innovative work, but I also encountered several practitioners who, completely separately from FBT, developed techniques that emphasize the important role of parental support and help in adolescent recovery from eating disorders.

            One of these experts is Pierre Leichner, M.D., psychiatrist and former psychiatric director of the eating disorders program at the British Columbia Children’s Hospital in Vancouver, who developed a family meal support program.

            Fifteen years ago, Dr. Leichner began to see two trends emerge : an increasing emphasis on client satisfaction and client feedback in clinics, and the realization that friends and family could be important aids in recovery. The old hierarchical model was giving way to a more egalitarian, collaborative approach, whether the treatment was for eating disorders, drug addiction, diabetes or depression.

            In the late ’90s, Dr. Leichner developed, through trial and error, a more collaborative way to coax eating-disordered children and adolescents to eat again. Dr. Leichner calls meal support  therapy–where a group of eating-disordered patients eats meals with the help of a coach–“one of the most underrated and understudied parts of managing people with eating disorders.” If therapists and doctors “can find common ground with the patient” instead of forcing the patient to eat in order to recover, Dr. Leichner discovered, the results could be exceptionally good.

            Dr. Leichner relied on interviews with former patients to help refine his meal support technique. “We peeled away the onion constructed of medical myths: You can’t trust a patient to tell you what works, you can’t trust a patient to do exercise, you can’t trust them to serve themselves meals—those were all myths,” he says.

            At British Columbia Children’s Hospital’s Intensive Treatment Service (ITS), up to 12 inpatients sit down to regular meals with two support staff members. A patient new to the group might have meals served to her or him for the first week or so, but within a month, most are serving themselves. The setting is homey, with metal cutlery and glassware. Food is served family style, in large bowls set out beside the table. Patients serve themselves, and then sit down. All have been coached before by a dietitian on serving sizes and quantities before the meal, so supervision at the meal is minimal.

            “We strive for more and more autonomy, until patients feel comfortable sitting at the table for a full half hour,” says Dr. Leichner.   Soon, patients who were refusing to eat or drink, some of whom were being tube fed when they arrived, are feeding themselves on their own. “It’s difficult to do,” Dr. Leichner says of his method, but the positive environment of the meal setting and the way the staff “rewards recovery” rather than continuation of bad behaviors makes change possible.  

Take care,

Nancy

Coming in the next and last installment of this post: Continuing meal support therapy at home after leaving the hospital.

A recent New York Times Magazine cover story by Times restaurant critic Frank Bruni, I was a Baby Bulimic, has drawn attention to the topic of bulimia in boys.
In this excerpt from an upcoming memoir, Born Round: The Secret History of a Full-Time Eater, Bruni describes his long history of compulsive overeating, which began in childhood and in college developed into bulimia.
Although the article’s title is catchy, Bruni really wasn’t a “baby bulimic.” According to his mother (he was too young to remember) one day when he was 18 months old, Bruni had such a violent crying fit when mom said no to another hamburger that he threw up. Following this episode, whenever mom said no to seconds he would vomit. Bruni did this so often that mom carried wipes around to clean up the mess. Neither Bruni nor his mom knows why the behavior stopped within the year. This is not bulimia, but an atypical way to get attention from a parent.
After years of worrying about his weight and dieting, however, Bruni did in college develop what sounds like a classic case of bulimia. The risk factors in his case were typical: He was a chubby kid, he was teased by schoolmates about his weight, and his mom was a chronic dieter who was perpetually attempting the latest fad diet.
Bruni finally stopped purging after college friends confronted him. As he describes this pivotal incident, he had just rejoined the group after slipping away to the restroom to purge the whole tuna sub he had consumed. The knowledge that he wasn’t “succeeding in keeping my throwing up a secret,” coupled with the information he had looked up on bulimia were what finally gave him the strength to stop.
He admits that he was “spooked” by information on the effects “this bulimia thing could have on your skin (bad), hair (worse), gums (eek!) and fingernails (nasty).” Bruni adds one important point: his purges didn’t stop immediately, but gradually, over time.
The take-home messages from this article are: 1. Fad dieting, or dieting of any sort, is never advisable. Studies show that the few pounds people lose on diets tend to come back, often with extra pounds. 2. Never encourage your child to diet. 3. If you are a parent of a child who vomits easily, be very watchful. Such children can be at higher risk for bulimia as they become teenagers. 4. Confronting a friend about your suspicions and concerns about-eating disordered behaviors can make an important difference. 5. Don’t expect to stop cold-turkey. Overcoming bulimia is hard to do, and there will be setbacks along the way.

Marcia and Nancy

Dear Readers,

                We hope you’re having a great summer! Some good news: Jenni Schaefer, who chronicled her winning battle against anorexia and bulimia in Life Without Ed,  has a new book coming out in September, Goodbye Ed, Hello Me: Recover From Your Eating Disorder and Fall in Love with Life.

                In her 2003 Life Without Ed, Jenni popularized the concept of naming and personifying her eating disorder (in her case, calling it “Ed” for short) and even wrote a song about her struggle, also called “Life Without Ed.” Jenni, it turns out is multitalented; in addition to writing, she’s a Nashville singer/songwriter.

                Marcia and I have written a lot about the importance of separating yourself from your disorder (or parents helping their child do so) in order to gain the upper hand over it. Jenni took this idea many steps further and made her “Ed” into nearly a living, breathing, bullying partner whose grip she struggled to shake off.

                In her new book Jenni declares, “I’m now divorced from Ed (and married to myself). “ She is more interested in how to live life post-Ed. There are chapters on everything from how to begin treating yourself well instead of feeling you are not worthy of good things (“Jenni Deserves a Kitchen Table”), how recovery taught Jenni to recognize and accept feelings of loneliness and sadness (“The Sadness Cloud”) and some spot-on advice from the still-recovering, first-class perfectionist on learning to let go and have fun (“Having Fun to Save My Life”). Interspersed throughout the book are “Real Action” exercises you can do, such as keeping a “worry journal” to calculate the time you waste needlessly obsessing, or writing down then eliminating the eating-disordered behaviors that you are still holding on to (Jenni’s was being a closet diet soda drinker).

                This is the book to read if you are feeling down and hopeless over an eating disorder. It’s hard to dip into it and not come away feeling that, with the right attitude and a lot of gumption, you too can overcome even the most difficult disorder.

                One thing Jenni is adamant about is that she is recovered, period. Even a difficult, last-minute broken engagement (the dress had been purchased, the invitations stamped and ready to mail) did not send her running back into Ed’s arms. When I asked her about this, Jenni responded, “People don’t seem to have a problem with the sentence: recovery IS possible. What they have a problem with is someone (like myself) saying that I am recovered. Period. I had an eating disorder, and now I don’t.”

                She is frequently asked, “Are you saying that you never relapse?” “Are you saying that you are not afraid of relapsing in the future?” Says Jenni, “My answer is: ‘No, I never relapse. I won’t ever again. I am recovered. I had to find balance with food. Unlike alcohol and drugs, I couldn’t just put it on the shelf and never “drink” or “use” again. In a world where we need food to survive,

I had to fully recover from Ed.”

                Marcia and I totally agree; in the introduction to our book we wrote that we wanted to turn the myth that eating disorder sufferers are “perpetually in recovery” on its head, and demonstrate that with sustained effort from you, your loved ones and your doctor or treatment team, you CAN beat your eating disorder, once and for all. Marcia did, and Jenni did. Which means you can, too.  

                Jenni’s book comes out in September from McGraw Hill. For more on the book and Jenni, check out her website at http://www.jennischaefer.com .

Take care,

Nancy and Marcia

I am sad to report that I am seeing more and more children with binge eating disorder. Hilary, only 11 years old when I first saw her, is a good example. Both her parents (recently divorced) were concerned about Hilary’s weight gain. Her mother, who suffered herself from an eating disorder as a teen, was concerned about Hilary’s food choices. Hilary’s new step-mom was a devotee of Weight Watchers weighing herself and her food. Dad had always pushed the clean plate club. To top it off, Hilary’s new step-grandparents ate according to the “Blood Type Diet.” Though Hilary was less concerned about her size than her parents, she embarrassed that she ate food in secret and wanted help with that. She also wanted my help in sorting out all the different messages she was getting about how to eat.

I told Hilary’s parents that “Hilary’s weight will take care of itself over time if she followed a version of my food plan that is comfortable for her.” I cautioned Hilary’s family against encouraging her to diet because “dieting will put Hilary at an increased risk for serious eating disorder.” Most of Hilary’s eating problems were solved by her family adopting my food plan. In the year, I worked with Hilary and her family, she didn’t lose any weight but she grew two inches in height and stopped binge eating.

I am pleased to report that professionals now have a preliminary set of guidelines for diagnosing binge eating disorders among children. I am hopeful that these guidelines will help more young patients like my Hilary get the help they need. Much of the work on the new guidelines has been done by Marsha D. Marcus, Ph.D., professor of psychiatry and psychology at Western Psychiatric Institute and Clinic. A child who does one or more of the following may have binge eating disorder:
1. Feels a loss of control over eating.
2. Eats in absence of hunger.
3. Eats when they are sad, bored, or restless.
4. Eats as a reward.
5. Sneaks or hides food.

Dr. Marcus notes that unlike the majority of binge-eating adults, binge-eating children are not likely to be dieters or to have large sized binges. Though dieting in children creates increased risk for binge-eating and the other eating disorders.

Our book, The Parent’s Guide to Eating Disorders, gives parents clear directions about what to do at home to help a binge-eating child. If despite your best efforts your child continues to struggle, ask your doctor for a referral to a skilled nutritionist.

Best wishes, Marcia and Nancy

Dear Readers,

On this blog, Marcia and I have talked about the different ways one can interpret or understand eating disorders. Today, I have a few more for you. One of the hallmarks of a severe adolescent or adult eating disorder is a remarkable lack of joy, an inability to simply be in the moment. Instead, the anorexic or bulimic is always focused on a future outcome, such as “What will happen to me if I cave in to temptation and eat a peanut butter sandwich?” or, “If I don’t exercise every day I will feel like a pig.” Nancy Zucker, Ph.D., director of the Duke Eating Disorder Program at Duke University in Durham, N.C., brought up this singular lack of joy and a few other characteristic eating-disordered traits during a recent interview I conducted with her.  

            Another example: once on the road to recovery, both parents and those who struggled with an eating disorder will often experience what Dr. Zucker calls symptoms of “almost a PTSD [Post-Traumatic Stress Disorder] kind of trauma.” This is understandable because to be locked in the vise of an eating disorder is traumatic, resulting in a loss of identity, control over one’s life, and all too often, the will or physical strength needed to continue living. For the recovered or recovering patient, just the memory of the terrifying power of the disorder or the temptations that could trigger it once again can be disabling, leaving the patient feeling vulnerable and scared. For the parent, fear of an exacerbation of symptoms may lead them to be hypervigiliant to any slight change of eating behavior, an exhausting process for both child and parent.

            Dr. Zucker sees eating disorders as “a disorder of self-regulation, a disorder of self-parenting.” The adolescent is “unable to respond to her own needs” and must be taught how to do that, she explains. Feeling lonely, depressed, hungry, angry or sad are some of the feelings that the eating-disordered child fails to be responsive to. It remains an open question whether it is a failure to decipher these cues, a failure to respond, or both. The individual with an eating disorder knows only that she feels badly, and treats this condition with her default response of self-starvation, or bingeing and purging. 

            To help parents deal with these emotional and behavioral challenges, Dr. Zucker has developed a skills program called Off the C.U.F.F. (Calm, Unwavering, Firm and Funny) that helps them recognize and attend to their own needs, and by example, show their child how to do the same thing. It also helps them react swiftly to signs of impending roadblocks in their child’s recovery. One of Dr. Zucker’s most popular tools is recognizing and mastering the “Eating Disorder wave”. The “wave” refers to a brewing emotional tsunami, the rising wall of intense feeling that can overpower a child and knock her off her feet and back into the disorder if parents don’t intervene in time. Learning to read subtle emotional cues and react swiftly, it turns out, is a highly effective way to prevent relapse or continued self-destructive behavior.

            Dr. Zucker’s program has been so successful that it has been adopted by hospitals and eating disorder treatment centers around the world. A manualized version of Off the C.U.F.F. is also available.

Take care,

Nancy

Dear Readers,

The title of this article in today’s Wall Street Journal says it all: “Silencing a Voice That Says You’re A Fraud.” It turns out that the Inner Critic that tells you on a daily basis that you are fat, disgusting, a pig, etc., isn’t just a trait of those with eating disorders. Physicians, eminent scholars, and executives seemingly immune to self-doubt about their abilities, intelligence, or achievements can all suffer froma sense of inadequacy in one area of life or another. 

Kept in check, the Inner Critic can help a person achieve. The out-of-control Inner Critic, however, can be a destructive force, leading to depression and anxiety. The article, by Melinda Beck, describes how Cognitive Behavioral Therapy (CBT) can help combat this self-critical tendency. This technique is one of the most effective tools for combatting eating disorders, especially bulimia, body dysmorphic and binge-eating disorders. Try completing the 15-item self-criticism questionnare to see where you stand on the spectrum of self-critical behavior,  and see if you can apply some of the CBT techniques the article outlines to your own life!

Take care,

Nancy

 Dear Readers,

                We’ve often heard people say, “Eating disorders aren’t about food at all. They’re about depression, anxiety, or low self-esteem.” This takes away some of the stigma that an eating disorder sufferer feels because it means she’s not just self-involved and superficial for being obsessed with appearance and weight. There are deeper things going on here, which merit doctor’s visits and hospital stays, not to mention insurance reimbursements.

                Another way to telegraph what eating disorders are is a saying that Marcia sometimes uses: “Genetics loads the gun, and environment pulls the trigger.” This refers to current scientific understanding, which holds that eating disorders originate through an interplay of genetic (your mother had an eating disorder, so you are more likely to develop one) and environmental (incessant schoolyard taunting about your size led you to self-starvation) factors.

                These handy  aphorisms are true, but the reason they bear repeating is that when it comes to making an eating-disordered person better a lot of the hard work, fear, pain and suffering the patient has to go through in order to recover revolves around, well, food. Which can be confusing.

                It may help to view eating disorders through the addiction model. An alcoholic or a drug addict drinks or takes drugs as a self-soothing measure. Ingesting them can take the edge off a tragic loss, a blow to one’s confidence, even a bad day.   Walter Kaye, the highly respected director of UCSD’s Eating Disorder Research and Treatment Program, says of the anorexia patient, “These are very anxious people. Not eating is the one thing that makes the anxiety go away. Whereas most people feel pleasure when they eat, the anorexic feels uncomfortable.” Instead of taking something in order to reduce anxiety, as the alcoholic might, the anorexic’s self-soothing trick involves not taking the substance, or not eating.

                Another way to think of an eating disorder is in the context of various fears or phobias, such as fear of flying, fear of public speaking, or if you are Indiana Jones, fear of snakes. The way to overcome such fears is to make oneself face them, over and over.

                As Alicia Hirsch, Psy.D., director of clinical services at Mt. Sinai Eating and Weight Disorders Program in New York City says, there is an “exposure component” to treating eating disorders. “You’re asking a patient to do something incredibly uncomfortable,” which is eating. Repeated exposure to the feared thing, in this case something edible, makes the patient’s anxiety and discomfort level come down.  “The food is the medicine,” Dr. Hirsch explains.

            So, to sum up: It’s not about food. It’s about genetics and environment. Food makes the eating disordered person anxious. Food is the medicine. Any questions?

            Both the UCSD and the Mt. Sinai programs educate families about the complex mix of biological and environmental factors that are involved in the creation of eating disorders. This is an important component of any treatment program, so if you are in the market for one now, make sure it includes this piece. The more you learn, read and understand about eating disorders, the better armed you will be to help your child or loved one recover.

Take care,

Nancy

Dear Readers, 

            In our book and on this blog, Marcia and I have written about the Maudsely method of Family Based Treatment (FBT) for anorexia nervosa. This is a form of treatment developed at the Maudsley Hospital in London that makes parents key players in their child’s recovery, putting them in control of refeeding their child or adolescent (once the child is physically out of danger) and returning her or him to health. Families and clinicians who have tried this method swear by it and there is even a website, www.maudsleyparents.org  that offers information and support for families engaged in FBT. Marcia’s own Parent-Assisted Meals and Snacks (PAMS), is based on FBT principles.

            There are also a number of studies being conducted on how to expand the use of this effective method of treatment. One of these is an NIH-sponsored clinical trial examining the effectiveness of FBT for early onset or emerging cases of anorexia, headed by Katharine L. Loeb, Ph.D., director of research for the Mt. Sinai Eating and Weight Disorders Program.

            Dr. Loeb is seeking patients between the ages of 10 and 17 who meet at least some of the criteria to be considered anorexic, and who have one or more parents or guardians also willing to participate in the study. If your child is refusing to maintain a normal body weight, has stopped having her periods, has a fear of weight gain or poor body image, or any other symptoms of anorexia, you may be eligible for this study.    

            Although statistics are hard to come by, the conventional wisdom in the eating disorders treatment field is that the earlier anorexia is treated, the better the outcome. Dr. Loeb hopes her research will eventually lead to a version of FBT specifically targeted at emerging or atypical cases of anorexia, so that it can be used in efforts to prevent this pernicious disorder from fully unfolding or becoming chronic. 

            Getting timely treatment is difficult because the existing criteria that doctors use to diagnose anorexia are not developmentally sensitive enough to allow them to always catch anorexia in its early stages. Often the child will deny or minimize having certain symptoms, leaving the pediatrician confused about whether to label the problem anorexia. For example the child might play down symptoms for fear of being made to gain weight, quit an athletic team, or stop her excessive exercising. The difference between calling the problem “anorexia” and calling it “normal dieting behavior” could be the difference between getting the help a child needs to stop the disease in its tracks or letting it get out of hand. Dr. Loeb hopes that her study will also aid in the creation of case identification methods that enable doctors to navigate these gray areas and recognize early onset cases.

            We stress in our book the importance of prevention; Dr. Loeb’s work is the kind of research we need to allow parents to fight anorexia before it becomes entrenched, before it has begun to do irreversible damage to the child’s bones, heart or brain. 

            To find out more about this study, which involves both family-based and individual interventions, or about other treatment options, please contact Lauren Alfano: tel. (212) 659 8724 or email,  Lauren.alfano@mssm.edu .

Take care,

Nancy