Kartini Clinic for Children and Families

Pediatric Eating Disorder Treatment Program

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Are social media platforms making eating disorders in children worse?

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At least one school district in Seattle thinks so. Seattle Public Schools (SPS) has filed a suit in US DIstrict Court alleging that “defendants [social media platforms such as Facebook, TikTok, Instagram, YouTube, and Snapchat] affirmatively recommend and promote harmful content to youth, such as pro-anorexia and eating disorder content.” Essentially it appears SPS is saying such content exacerbates eating disorder symptoms and undermines effective treatment.

Not surprisingly perhaps, the issue is complicated. First some medical facts: eating disorders are biological brain disorders that are highly heritable (estimates – based on twin studies and genome-wide analyses – are as high as 74%; as a reference, that heritability is similar to the heritability of height in humans is estimated around 80%). This means eating disorders run in families and are emphatically NOT lifestyle “choices”, volitional behaviors on the part of patients, the result of bad parenting or the effects of images on social media. Such theories and explanations were once common but have in recent years been completely debunked by rigorous scientific studies (see above).   

At Kartini Clinic we like to put it this way: parents don’t cause eating disorders and children don’t choose to have them. Period.

So what about the role of social media? 

Consider the following analogy: can a child develop type 2 diabetes (T2DM) from looking at pictures of cheeseburgers? I think most of us would agree this sounds implausible and not very scientific. That’s probably because we understand and acknowledge T2DM to be a biological condition caused by complex interactions of genetics and environment. Eating disorders such as anorexia are no different.

This is not to say social media messaging can’t do any harm, for example by triggering behaviors or making children feel worse about themselves, which in turn could undermine effective treatment. After all, SPS is not alleging that social media platforms cause eating disorders but rather that they are contributing meaningfully (and, crucially, knowingly) to the disease burden on children suffering from these potentially devastating and deadly illnesses. 

At Kartini Clinic we certainly do share these concerns, and we would wholeheartedly support efforts such as additional mental health professionals in schools, lesson plans and additional training for teachers  provided they are grounded in a scientific understanding of these illnesses. Ultimately the key is to ensure that eating disorders are diagnosed promptly and treated effectively using evidence-based practices (i.e. grounding diagnosis and treatment in physical medicine and using behavioral health interventions such as family-centered treatment: families are almost always part of the solution to treatment in children, not part of the problem). Could the social media companies do better? Certainly. Perhaps they could “pair” content of concern with objective information about the causes, symptoms and potential for effective, life saving treatment of eating disorders in children. Although they aren’t directly responsible for these terrible illnesses, social media platforms could be powerful allies in helping us address this problem more effectively.

ARFID Revisited

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The longer I treat children with eating disorders, the more I begin to doubt the usefulness of exact nomenclature.

In 2000, at the founding of our Kartini Day Treatment Unit, now called Kartini Partial Hospitalization Program, nearly 80% of all the patients we saw carried a diagnosis of anorexia nervosa (correct, I think), of which the overwhelming majority had the restricting form. This may have been partially an artifact of the age of the patients we treated (children and adolescents) in whom this eating disorder is the most common kind, but I think the fact that today we also see a large number of children with the diagnosis ARFID (avoidant restrictive food intake disorder) represents a shift in the consciousness of general physicians, dietitians and therapists towards a more advanced understanding of weight loss and poor growth in childhood.

In medical terminology, children who lose weight, eat poorly and do not grow well are referred to as having “failure to thrive” (FTT).  Volumes have been written in the general pediatric literature about FTT and its various causes, but the mnemonic I was taught in residency was “heart, kidney, mothers, others”.  

Problems with the “heart” or “kidney” are relatively easy for medical providers to rule out, but “mothers”?  Although there certainly are cases of child neglect—and we do see them—this is a rare cause of FTT. In retrospect, “mothers” as part of the mnemonic probably reflected the general tendency to blame parents for their child’s illness when the cause was unknown. Today I would say that the cause of FTT is mostly “others”, meaning a whole range of conditions that can interfere with growth and development. More about that in a moment.

One of the goals of the DSM-5 (Diagnostic and Statistical Manual, 5th edition) was to raise awareness of the fact that children were not “miniature adults”, and as Dasha Nicholls, British eating disorder specialist so aptly put it at the end of the last decade, “children into DSM don’t go.”  Children who carry a diagnosis of anorexia nervosa may not exhibit all of the features of the adult form of the illness. This is, in fact, common in pediatric diagnoses of all types: rheumatoid arthritis, leukemia, depression, anxiety, sepsis and many more. The creation of the term ARFID was meant to acknowledge these differences.

According to the DSM 5 ARFID is defined as “an eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following”:

  • Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
  • Significant nutritional deficiency.
  • Dependence on enteral feeding or oral nutritional supplements.
  • Marked interference with psychosocial functioning.
  • The disturbance is not better explained by lack of available food or by an associated culturally sanctioned practice.
  • The eating disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.
  • The eating disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder. When the eating disturbance occurs in the context of another condition or disorder, the severity of the eating disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention.

ARFID does not, in my view, refer only to selective eating, for example. Just look at the examples listed: apparent lack of eating or interest in food  (this can be the appetite suppression of depression, malignancy, trauma, or medications prescribed for ADHD (oh yes, we see lots of this!) or cancer; avoidance of food based on sensory characteristics (such as selective eating); concern about aversive consequences of eating (such as food phobia also known as functional dysphagia). But all of these examples are characterized by significant weight loss and/or failure to gain weight during growth, nutritional deficiency (not defined), and/or dependence on nasogastric feeds or constant liquid feed replacement and – importantly — interference with psychosocial functioning.  And to make the diagnosis, the patient cannot be thought to have anorexia nervosa or bulimia nervosa.

So what is the difference between ARFID and FTT?  Basically none. One is a medical term and one a mental health term. Or put another way, if you have one of the many diagnoses subsumed under ARFID, you will fail to thrive.

And as for psychosocial functioning, sharing meals is one of the glues of society everywhere. Our obsession with weight control has sometimes obscured this basic fact, but children need to be able to eat socially with their family and friends. And failure to do so can be one of the early signs that there is a problem.

Thanks, I believe, to a recent heightened awareness of the importance of adequate weight gain in childhood and adolescence, children with any of the conditions included under the term ARFID are beginning to appear in our practice in increasing numbers. And we welcome them. Their successful treatment is one of the most gratifying things that we do.

So back to my opening statement that the longer I practice, the less important an exact nomenclature seem. Why would that be? Well, because the treatment for all of these things is the same, or very similar: ordered eating in a peaceful, age-appropriate environment with providers who understand how challenging this can be, yet who are not afraid to use nasogastric tubes where needed to reverse the consequences of malnutrition, and who understand the biology of growth and development and the importance of normal psychosocial functioning.

Because of the medical challenges associated with refeeding children with some forms of ARFID, I have heard an occasional mental health colleague wish for the days when all patients had anorexia or bulimia.  But at Kartini Clinic we say, “ARFID? Bring it on! We know what to do.”

Relapse

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kartini web 083117Is anorexia nervosa (AN) a chronic illness? What do we mean when we say that AN, or any other eating disorder, is a chronic illness?

Wikipedia says: “The term chronic is often applied when the course of the disease lasts for more than three months. Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and viral diseases such as hepatitis C and HIV/AIDS. In medicine, the opposite of chronic is acute.”

Lasts for more than three months? Oh yes. By that metric AN is certainly chronic. But does chronicity imply anything about whether or not it can be cured? No, because on that sample list of chronic illnesses hepatitis C, for example, can certainly be cured, as can several cancers. And note that it was a major accomplishment to turn HIV/AIDS from a death sentence into a chronic (but controllable) illness.

So I would say that eating disorders, like depression and anxiety disorders, are chronic illnesses which (with treatment) can be made to disappear for years, perhaps even for a lifetime. Far, far from being hopeless, the situation with pediatric eating disorders is very hopeful. Kids can and do get well and go on to lead wonderful lives. Last week, a 29 year old former patient of ours came to see us and to thank us.  She is happy, beautiful, married, educated and the mother of two.  She is successful and… grateful. “Thank you,” she told us “for insisting that I do what was right rather than do what I wanted.”

Acute illnesses come on suddenly, sometimes within hours, get treated and go away (or are fatal) within a short period of time. Chronic illnesses often come on more slowly, even subtly, and typically require longer treatment in order to go into remission. Remission means the symptoms are gone for now, whether “for now” means for months or for years. And no doubt in some people their symptoms extinguish forever. The trouble is, you can’t fast forward to the end of someone’s life to find out.

The opposite of remission is relapse.

But let’s be careful with our vocabulary here: you have to actually be “in remission” in order to be said to have “relapsed.” A common error we observe is for parents or providers to say that a child has relapsed when they were not in remission in the first place.

In the case of AN it is not enough to be weight-restored in order to be “in remission.”  There can be no remission without weight restoration, but the fact that a patient is no longer restricting or losing weight is not enough to call them in remission. They may still have tortured thoughts about their imagined large body size, their weight/size may assume much more importance in their minds than it deserves, they may not be able to resume their former easy social and familial functioning and they may be too anxious to return to school. Resolution of these issues is called psychological remission, and it takes longer to achieve that mere physical remission.

So what does relapse look like? First and foremost it is likely to look like a resurgence of the psychological symptoms you saw initially: increase in social isolation, focus on schoolwork to the detriment of time with friends and family, increased anxiety, increased exercise, perhaps an increase in body checking or a refusal to wear a swimsuit, increased irritability. Then the “shaving calories” behavior starts: decreased portion size, uneaten snacks, new rejection of categories of foods (“gluten” “meat” or whatever)… Basically it begins to look like it did when you first met the eating disorder, only sometimes more subtle.

What do you do? JUMP on it. Do not tolerate any weight loss, monitor exercise, supervise meals and if weight loss cannot be stopped within in 10 days or so seek help.

The problem with relapse is that it is terrifying and it feels like a failure: your failure, your child’s failure, the treatment team’s failure. Yet it’s not. Relapse is a common feature of any chronic disease.

But the good news is that you can get your child back into remission as long as you do not stick your head in the waters of that ole river in Egypt: de Nile.

Stay calm. Don't panic, you actually do know what to do. Avoid a circular firing squad with your family, child and treatment team. It’s no one’s fault.  It’s just the way this illness acts sometimes.  

Avoid wishful thinking: I’m sure she doesn't want to get worse because she’s graduating in a few months, going off to college, taking a trip to France, just got on the swim team… you name it.  Remember that your child is not choosing this relapse, they are suffering from it.

Relapse is not fate; it is a stumbling block on the road to your child’s future. Take a deep breath, reach out to those who support you, and carry on. With determination and treatment, this too shall pass


 

Diabetes

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kartini web 030330Approximately 1.25 million American children and adults have type 1 diabetes (T1DM), according to the American Diabetes Association. Type 1 diabetes is an autoimmune process whereby the insulin-producing cells of the pancreas are irreversibly destroyed and the ability to use food as energy is impaired. It can lead to growth stunting, intellectual impairment, blindness, vomiting, poor circulation and even limb amputation. It is not the kind of diabetes that you read about in the press as being the result of “lifestyle choices.”  

Prior to the invention of insulin shots, T1DM was uniformly lethal. And while today we can control it, we still have no cure.

There have been many medical advances in the treatment of T1DM, but the dream of an artificial pancreas has not  been realized, and until it is, diabetics are forced to use insulin injections and their conscious decisions about food as a substitute for the kind of unconscious glucose control we all take for granted. You can imagine how often this can go wrong, even with the best of intentions!  

The balance between insulin and glucose is part of a well choreographed dance between our pancreas, liver, gut, brain and muscles. It is how we make energy out of the food we eat, how we control our growth and muscular strength, and when it goes awry, it affects everything. Uncontrolled, untreated diabetes leads to delirium, coma and death. Over-controlled diabetes can lead to blood sugar lows that are at least as dangerous. Steering between this Scylla and Charybdis, is it any wonder that the added complication of eating disordered behaviors can be overwhelming? No one asks to have T1DM, nor is it caused by parents or “lifestyle choices,” in fact, it’s not a “choice” at all — sound familiar?

So how can eating disorders complicate the treatment of diabetes?

  • Restricting food intake can magnify low blood sugars
  • Unpredictable bingeing overloads planned insulin injections
  • Unpredictable, though normal, food intake can cause dangerous hypo or hyperglycemia when there is a mismatch between insulin given by needle and food taken in
  • Continual disruptions in blood sugar control can lead to poor vision, destroy the peripheral nervous system and affect mood and behavior
  • The temptation to induce rapid weight loss can lead to a patient’s intentional underdosing of their insulin
  • Purging can cause electrolyte disturbances (such as low potassium) which are then worsened by the administration of insulin and lead to sudden death

At Kartini Clinic we have treated many children with co-occurring diabetes and eating disorders. It is not actually hard for a treatment program with a strong medical team (i.e. one that is always onsite, not simply using “consulting” physicians), but the fact that close adherence to first principles (see below) sometimes flies in the face of a child’s desire for autonomy can make it challenging. Getting parents on board with first principles from the start is critical.

What are these first principles at the beginning of treatment?

  • Parents must be in charge of all food and willing to record it (no different than for any patient with an eating disorder)
  • Parents must be in charge of glucose measurements (this is made easy by contemporary glucometer devices which store multiple measurements)
  • Parents must be in charge of supervising insulin administration and willing to record it
  • In the partial hospital or intensive outpatient setting, staff must be trained in supervision of meals AND insulin injection
  • Staff must be trained in emergency administration of glucose or glucagon
  • Every effort must be made to empower families to become experts in management
  • Staff must be able to communicate swiftly and easily with the child’s diabetologist

Our experience has been that close adherence to these first principles gives our diabetic kids with eating disorders great blood sugar results– sometimes for the first time in years. Their blood sugar is better, their energy improves and their mood is better. Then we can work on the eating disorder.

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Five Things Every Parent Should Know About Childhood Eating Disorders

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AdobeStock 770934451) Weight loss in children isn’t normal

Imagine you’re a parent of a bright, active 12 year old boy. He gets good grades and has lots of friends. He excels at sports. Then something changes; he begins to lose weight. At his last checkup his pediatrician registers a heart rate in the low 50s. He starts to withdraw, not doing many things he used to enjoy, with the exception of exercise. He now exercises with a new intensity.

His doctor tells you not to worry. “It’s just a stage”, she says. “Don’t make a big deal out if it, or you might make it worse. He has weight loss and a low heart rate because he’s an athlete.” But you have the nagging feeling that something’s wrong. What do you do?

For nearly two decades Kartini Clinic’s internationally recognized team of pediatricians and therapists has diagnosed and treated more than 3000 children from across the country and all walks of life. And we have seen presentations like the one described above hundreds of times.

Our message is always the same: weight loss in children is not normal and should be investigated immediately.

And weight loss shouldn’t be the only concern. Because children are still growing they need to gain weight. An interruption in their past rates of growth and development is a sign of potential trouble ahead. Your child’s growth chart is a critical diagnostic tool that can provide early warnings. Always review your child’s growth chart with their doctor and remember that averages don’t apply to individuals. What matters most for your child’s health should be based on their unique biology.

2) Children are not small adults

In the example above, with a daytime heart rate in the low 50s, this child’s overnight heart rate could be in the 40s. This is dangerous territory for a child. The American Academy of Pediatrics’ hospitalization guidelines recommend admission with a nighttime heart rate below 45, regardless of athleticism. Don’t be fooled into thinking that because Usain Bolt has a resting heart rate in the 40s, it’s OK for your child to do so.

Childhood is an essential period of growth and development, a time when critical biological systems form. Weight loss – or simply a failure to grow and develop normally – could signal a dangerous disruption to these processes.

3) Parents don’t cause eating disorders (and children don’t choose to have them)

This is our motto, and something we make clear to all families from day one. The scientific evidence is unambiguous. Parents don’t cause a child’s eating disorder, any more than they cause Type 1 diabetes or autism. These are both understood to be genetically inherited illnesses. So are eating disorders.

4) Eating disorders are brain disorders and run in families

How do we know this? Decades of research using twins separated at birth has firmly established the heritability of anorexia nervosa (the most thoroughly studied eating disorder) between 50% and 70%. By comparison, heritability of height is about 90%. This means your height is 90% dependent on your parents’ height. The other 10% comes from environment. Equally, anorexia’s high heritability rate implies that it’s largely a biological brain disease, passed from parent to child, but with a significant environmental component. But like many complex illnesses, we don’t yet know enough about what environmental “triggers” lead some who are genetically vulnerable to become ill.

5) If you think something’s wrong, get help

We always tell parents, ‘you are the experts in your child.’ If you think something’s wrong, don’t let your concerns be ignored, even by your pediatrician. Our colleagues in primary care are in a tough position; they don’t want to overreact. Furthermore, eating disorders are thankfully quite rare. However, most doctors don’t have training in diagnosing or treating them. But they do happen, especially to genetically predisposed children. It’s therefore critical to understand the specific risk to your child. A pediatric specialist’s evaluation is the best way to rule out an eating disorder.