This video shows an 11 year old boy who has struggled with classic anorexia nervosa, including fear of fat, self-denial, increased and compulsive exercise,weight loss and intrusive thoughts of worthlessness and shaming. He is also an excellent student, excels at sports and is personally very tidy. He comes from an intact, highly functional and supportive family and there is a family history of OCD and perfectionism. He is able to talk about “voices” telling him not to eat and what to drink. There are no symptoms of psychosis or delusions except for the delusional belief that he is fat. It is our hope that awareness of what anorexia nervosa can look like in young boys will help providers recognize the illness early and seek specialized help.
To The Bone: What You Should Know
On Friday, Netflix released “To the Bone,” a film about a young woman struggling with anorexia nervosa. The film has received a great deal of publicity, raising some questions and concerns among parents of children and adolescents with eating disorders.
Here are five questions you may have about the film.
My child is recovering from an eating disorder; should they watch this movie?
The question we would ask is why? If it is to gain “insight” into a complex brain illness in the hope that it will aid in recovery, the answer is no.
While this movie is at times emotionally touching and quite funny, in our opinion it doesn’t really represent well the current scientific understanding of anorexia or its evidence-based treatment practices, especially for children. It is a dramatic film much like any other: about imperfect people trying to navigate the challenges in life we all face. It simplifies and conflates many complex biological issues; it is at best a very personal journey through illness and not directly applicable to anyone but the author/director’s own biology and personal circumstances.
One of the most important things to bear in mind – at least for parents of minor children – is that this film is not about children at all (despite the emotional immaturity of several of the characters, including adults!). The scenes depicting treatment especially are very much from the perspective of adult treatment providers. While we would be the first to say we are not experts in adult eating disorder treatment, we can say with full confidence that this film does not depict the type of treatment that has been demonstrated to work best for children. And it is emphatically not the kind of treatment that we render at Kartini Clinic.
We might venture to say however that it could be an interesting movie for parents and therapists to watch and discuss together (without the child), as it does touch on important and quite common issues of family dynamics, and not just between parent and child, but between biological parents and step-parents, siblings, etc. In this sense it could provide some insight – or at least an opportunity for empathy – to those not directly suffering from this particular illness but whose lives are profoundly affected nonetheless.
How do I know if my child is ready to watch this movie?
Again, we would ask the question, what do you as a parent hope to gain from having your child watch this? As the basis of effective treatment we would say this movie is not what any child in recovery – or attempting to achieve recovery – needs to see. But we would also not want to discourage parents or other family members from watching and discussing its themes amongst themselves and/or with a family therapist.
My child's friends and schoolmates have all watched this movie and are now talking about eating disorders more than ever before. How do I help my child handle the hype?
By reminding them that they are not defined by their illness and that this is not real life; it’s a movie. It is no more applicable to them and their own treatment needs than the latest installment of Guardians of the Galaxy.
How do I know if my child is relapsing? How should I react?
If you suspect your child has been affected by this movie, either directly or indirectly, contact your family therapist or current provider immediately. If currently in treatment, be sure to raise it at your next appointment. For signs and symptoms of relapse, please refer to this blog post by Dr. O’Toole.
This movie about eating disorders is getting a lot of attention in the media. Could this cause more kids to develop eating disorders?
Absolutely not. Dramatic depictions cannot “cause” a biological illness such as anorexia nervosa anymore than pictures of cheeseburgers can cause diabetes. It’s just not possible. Could it be triggering to someone with a biological predisposition to the illness or someone in treatment/recovery? Perhaps, and so exposure for those in treatment or recovery is probably best avoided altogether. Better to watch The Lego Batman Movie.
But in all seriousness, we are all exposed daily to these sorts of themes and yet (thankfully) anorexia remains a rare illness. If the media could cause an eating disorder you would expect many more cases of illness than are currently diagnosed, even as we get much better at spotting and treating this dangerous brain disorder in children. Biology causes anorexia nervosa, not motion pictures.
How to Weigh an Eating Disordered Child or Teen
This is an update to a post originally shared on November 30, 2010.
When we discharge a patient from Kartini Clinic back to their primary care provider, it is usually with the instructions for weekly blind weights for about a month, then, if stable, every two weeks, then monthly for about half a year. But I am frequently asked by those primary care providers, “How do you weigh an eating disordered child?”
So here is my advice for weighing an eating disordered child for any providers who ask:
Remember that weights are a source of extreme anxiety for children/youth with eating disorders and, to the extent that weight gain/stabilization is seen by families as the only “real” benchmark of progress, pressure on the patient to falsify it in order to please others will be strong. Nonetheless, weight restoration is critical, critical, critical in recovery —even though it’s not everything.
Any patient who has web access will be aware of multiple ways to falsify their weight; you need to safeguard them against this overwhelming temptation by weighing them in a predictable, unvarying way (see below).
I would encourage you not to share a patient’s weight with them, but rather to carry their anxiety about weight numbers for them (with their parents, of course). Don’t make a big state secret out of it, just say something general like, “You’re doing a good job, we’re pretty stable,” or “We’re headed in the safe direction.”
Taking a weight is just like taking any other vital sign, which is what it is. Do it professionally, privately and kindly.
- Always weigh the patient on the same scale. If you have multiple scales in your office, mark one discreetly (fingernail polish works, just a dot).
- Always weigh them in a gown with no underwear and with their back to the scale.
- Please do not weigh them in the hall.
- Educate your nurse or medical assistant to say nothing while taking a weight or afterward, and to write it down away from the patient; do not leave the chart in the room.
- Weigh the patient after a void. Check the specific gravity of the urine in order to assess for any degree of water-loading; if the urine specific gravity is 1.005 or less, ask them to void again before weighing them. If it remains that dilute, abort the weighing and have a talk with them and their parents about over-drinking prior to a weight being taken. Let the parents help them prevent this.
- We have seen weights worn everywhere, even taped to the body. Be alert but non-judgmental about this possibility.
- If you have concerns about your patient wearing weights, ask them not to bring any bags, purses, etc into the exam room while they change into a gown. Once they leave, discreetly check the wastebasket for discarded heavy items.
- Teach your staff that you are not doing these things to “bust” your patients but to safeguard them.
So: weigh them in a room on the same scale each time, in a gown, after a void, with their back to the scale, and never allow your staff to comment on or reveal the results.
Online Reviews
This post is from Kartini Clinic CEO Morgan O'Toole.
Online reviews have become part of our everyday lives. Who hasn’t glanced at the star ratings when Googling a new hair salon or looking for a restaurant to try out? Most of the time, online reviews are just another useful data point when trying to make a casual purchasing decision.
But more essential services like doctor’s offices and health clinics come with Yelp pages and Google ratings these days, too. Kartini Clinic is one of them. But unlike restaurants or hair salons, we are strictly limited in our ability to respond to reviews, even when they contain content that is factually untrue or even implies active wrongdoing on the part of clinic staff. While we are always grateful to receive constructive feedback and are eager to work with families to resolve any issues they have during their time at Kartini Clinic, when problems are expressed in the form of an online review, our options to respond are very limited.
These reviews have also sometimes become a way for our young patients to express their frustration during a difficult period in their lives. One example occurred very recently: a spate of negative reviews, at least one of which was written under a pseudonym, claiming to be patients or friends of patients at Kartini Clinic appeared in a matter of hours. Though treatment is spent working with parents and patients towards a positive, often live-saving goal, there is no question that the day-to-day process of recovery is difficult. As we have discussed on this blog before, eating disorders are brain disorders. As with any brain disorder, children who suffer from them may be looking at the world through a distorted perspective– including, in many cases, an inability to acknowledge that their disordered eating is problematic at all. This is a clinical phenomenon called anosognosia.
(Incidentally, this is also partly why Kartini Clinic believes so firmly that weight restoration must be the first step in treatment. Malnourishment only exacerbates these problems. No one’s brain functions properly when they’re starving.)
Parents, we urge you to engage your children on this subject. Please help us to ensure that your child is expressing their fear and frustration in a constructive way. And if you have any feedback for Kartini Clinic, we encourage you to reach out to us at help@kartiniclinic.com, where we will be able to directly address your concerns.
We also invite parents to share their family’s experiences at Kartini Clinic, either publicly or privately. Private comments may be directed to an individual staff member, or to help@kartiniclinic.com. If you are willing to share publicly, you may do so on Google or Yelp.
The Biological Similarities Between Anorexia and Obesity
One thing I believe to have learned over the years is that those readers who are interested in anorexia nervosa seem to have little interest in obesity, which they regard as an lifestyle choice irrelevant to them, while those who study obesity often ask themselves what this rare condition (AN) has to do with their vastly more prevalent (read: important) condition of obesity (OB)? Well, as it turns out, quite a lot.
And by the way, it’s worth repeating at the outset, neither condition is one of choice. Who would choose them?
So let’s start with the simplest similarities between these two groups: those with anorexia nervosa and those with obesity. Both AN and OB are complex neurobiological disorders with widespread metabolic consequences.
Both have strong genetic and epigenetic underpinnings. People with both conditions can be exposed to and influenced by obesogens in the environment. Thus, a patient who is starved and thin during the years of their AN can develop the same higher body weight issues later in life, when exposed to obesogens.
And as we’ve learned from collaboration with Dr. Emily Cooper of the Diabesity Research Foundation, these similarities also relate to the metabolic consequences of dieting or restricting calories. It turns out that OB patients almost always have a history of self-imposed – and invariably encouraged! – diets or have engaged in periods of fruitless and harmful restricting (fruitless since the weight almost always comes back, plus some).
Patients with AN by definition engage in restricting (with or without purging). And it turns out that the response of the brain to dietary suppression is remarkably similar in both groups. And this really should surprise no one.
The brain hates low food intake. And it will exact its “revenge” for it. Even hours of restricting or dieting can result in a drop in leptin – a protein that, among other things, acts as a signal to the brain that the food supply is endangered – which in turn can cause a decrease in the base metabolic rate in order to conserve energy. To do this the brain turns down our “oven”, the thyroid gland, and slows the caloric burn rate. It also puts the brakes on reproduction, affecting both female and male hormones. It cranks up hormones designed to increase appetite such as ghrelin, which, according to Dr Cooper, has further central nervous system and peripheral inhibitory impacts on thyroid and reproductive function.
Dieting serves to increase ghrelin, which increases insulin and decreases postprandial glucose, a condition known as postprandial hypoglycemia (PPHG), something we often see in our patients with AN. And at Kartini Clinic we know this because we do extensive metabolic testing (part of Weight Restoration 2.0).
Our lab testing has shown that a remarkable number of young patients who are otherwise recovering nicely from AN have PPHG, which in turn suppresses leptin despite adequate weight restoration, and inhibits resumption of menstruation (in females AN patients). This in turn has serious implications for bone health and cognitive (brain) function.
But wait, the news about dieting gets worse! Ghrelin is elevated in dieting and can stay elevated a long time after resumption of eating — according to the Diabesity Research Foundation, 62 months or more. So recovering from dieting/restricting is remarkably similar whether your starting point was fat, thin or average. And both groups also suffer from terrible social stigmatization, though ironically, in my experience, the two groups often seem to have remarkably little sympathy for each other.
As I mentioned, another shared vulnerability is environmental obesogens. Obesogens are chemicals in our environment that trigger metabolic derangements whose end point is to raise body weight. These changes can be immediate and/or epigenetic, which may even make them heritable (a sobering thought).
Most of you will have heard of bisphenol-A, a plastic additive that has been put in products from baby bottles to cash register receipts, food containers, the lining of cans of food, etc. and which apparently can be absorbed through skin contact. Consumer pressure to limit the use of these additives has caused several companies (e.g.Tupperware, Kirkland/Costco) to remove them. Recently, however, there has been some controversy about whether the chemicals replacing them actually may be as bad.
Arsenic is cited as another obesogen. And while arsenic sounds like something you would not want to ingest, it’s where we are exposed to it that’s interesting — and terrifying. In an article in Consumer Reports, entitled Will a gluten-free diet really make you healthier? we learn that an unexpected effect of not eating wheat is the increased consumption of rice, which increases our exposure to arsenic. It turns out that a “local” (California) rice is among the lowest in arsenic. Good to know!
Another obesogen is nicotine, and I mention it because of its paradoxical influence on body weight: children exposed to smoking and nicotine in utero are frequently born small for gestational age, and it isn't until they are adults that the effects of intra-uterine nicotine exposure are seen in increased rates of obesity and metabolic syndrome.
There are several smartphone apps designed to help us monitor these additives, much like those for monitoring pesticides in food (e.g. “the Dirty Dozen”), though they are not all equally user-friendly. I typed in a few of my stand-by cosmetics into an app called “Think Dirty”. I first typed Chanel #5 perfume (presumably French) and found that it has a rating of 9 out of 10 (10 is the worst)! So how about my Clarins face cream? A 10; Neutrogena sunblock lotion? 8. And further random cosmetic counter options: La Mer’s Cream de la Mer? 9; Bobbi Brown rouge? 9; L’Oreal lipstick “tickled pink”? 10; Perricone MD face moisturizer (developed by a well known physician no less)? 9; his “concealer concealer”? 10. Of the Shampoos chosen at random: Organic Root Stimulator shampoo was a 10; Vidal Sasson Pro was a 9; Head and Shoulders Shampoo was a 10. Take a look for yourselves. It’s pretty concerning.
The message is: whether you have AN or suffer from OB, you are equally exposed and no matter your starting weight, the end point can be obesity and metabolic disorders. Oh, and by the way, no amount of dieting will prevent the increase in body size (to say nothing of endocrine disruption) caused by environmental obesogens– in fact, via the leptin changes outlined above, dieting will actually make it worse.
Are obesogens the sole concerns of extreme organic farmers, health food nuts and “orthorexic” individuals? Definitely not. My own study of weight homeostasis in humans has prompted me to re-think many things. It’s time we move beyond simple weight restoration in AN to Weight Restoration 2.0 and waaay beyond dieting and exercise as a treatment for OB.
Real health is what we should be after. We need to get informed; as providers and consumers we need to attempt to stay up with the science. We need to go where the science takes us despite the inconvenience and discomfort such a re-think may prompt. We are all on this journey together.