Many people are shocked when they learn that we have patients with anorexia nervosa as young as six or seven, and, although it is rare, it certainly does occur.
Why are they shocked? Because most of these folks, despite hearing me (and Dr. Tom Insel, among others) say “it’s a brain disorder”, still deeply believe that “the media” and our obsession with thinness causes anorexia. They are horrified that someone so young could be “ruined by society”. And blaming the parents for this is only a heartbeat away. No, no, I say, our obsession with thinness is ridiculous, faddish, poorly thought-out and can immensely complicate efforts at recovery, but it didn’t cause a restrictive eating disorder. How could it cause a highly heritable brain disorder? If it did, why don’t we all have it?
When the DSM was redone into its fifth iteration, Kartini Clinic and a handful of other international clinics submitted clinical data to show that severe restrictive eating disorders do occur in early childhood and when they do, often look somewhat different than the adult form. This is common for chronic pediatric conditions (think juvenile rheumatoid arthritis). Some, but not all of the features of the adult form may be present, and some children will go on to manifest the adult form later in life, but some will not.
The DSM 5, despite all of its other shortcomings, was the first time that eating disorders in children had seriously entered the discussion. The pediatric experience helped inform the discussion of redefining AN for everyone, which had already begun. Out went the requirement for amenorrhea (lack of periods), out went the requirement for what seemed a specific amount of weight loss (e.g. 85% of an average weight). I and a few others wanted the requirement for overt, stated “body dysmorphism” to go too, but a complex compromise was struck. Those patients who have relentless weight loss plus resistance to eating enough to maintain adequate weight and/or growth — and who either state that they are fat or refuse to eat based on their imagined large size — will now be placed into the category of AN. Those who, for whatever reason, were either too young to articulate body dysmorphism or did not have that psychological construct yet, but who realize they are too thin, will be placed into the new ARFID category (avoidant/restrictive food intake disorder).
So while it is a complex compromise, the creation of a distinction between AN and ARFID – coupled with the inclusion of “persistent lack of recognition of the seriousness of current low body weight” to the AN category – was helpful for those of us who see children. In particular, this “lack of recognition” criterion finally covered those many cases when a child exhibits the anosognosia characteristic of AN.
So, to put this distinction into case vignettes:
a ten year old boy who has lost weight and failed to grow along his previously normal growth lines, refuses to eat enough food or cut back on his activities, who does not state that he wants to get thin, but who seems indifferent to the consequences of his weight loss, has AN.
An eleven year old girl who states that she doesn’t want to get fat and who cuts back on her food or increases her activity, stands all the time and refuses to acknowledge the concerns of her parents and doctors, has AN.
A nine year old boy who has lost weight, refuses most food, and needs a nasogastric tube for feeds — but who recognizes he is too thin and would like to gain weight, and is withdrawn from his school and friends — is categorized as having ARFID.
Someday we may more appropriately (in my opinion) have a single category called “restrictive eating disorder” and forget all the other hair-splitting; after all treatment and outcome are the same in both cases.
But actually, I did not set out to write about the taxonomy of childhood eating disorders at all. What I wanted to write about were the clinical observations we have made at Kartini Clinic through the years about children with anorexia nervosa. What have we noticed about young children with this restrictive eating disorder?
Primarily we believe we have have noticed two major things:
early childhood-onset AN (under 12s) is often more severe and hard to treat
it is frequently accompanied by severe exercise compulsions and motor restlessness.
Firstly, those parents out there whose child first manifested their illness younger than age 12 know what I’m talking about. The early-onset form is not “anorexia lite”, quite the contrary. Young children may not state they are too fat or afraid of becoming so (although some do), they may simply sabotage all attempts to get them to eat enough to maintain weight and growth. Indeed, a lack of growth may be the first sign. They may hide food, or, if pressed to eat, they may just cry. They rarely give you the cohesive “reasons” for their behavior that an older child will do. This can be terrifying to parents and delay diagnosis, since the child’s doctor may not recognize these behaviors as an eating disorder. In our experience, referral to a nutritionist is not helpful (unless for the parents) since the child does not need more “information”; what they need is more food actually ingested! Referral to a psychologist is likewise not very useful in the moment, unless there are other psychological diagnoses or environmental issues, since what is there to wrap therapy around? The child needs to be re-fed, and promptly. Any psychological issues remaining once the brain has adequate nutrition can be (and as we do at Kartini Clinic) addressed once re-feeding has been completed.
Secondly, the exercise compulsions/motor restlessness is tormenting. And not just for the child. A very young child may engage in greatly increased participation in sports, but more typically they run around hectically and can only be restrained with difficulty. Some of them will refuse to ever sit. They stand at the table, they stand when waiting for doctor, they stand when playing, etc. They may appear to jump up and down, jiggle their extremities constantly, move their abdomen in and out, engage in “body checking” (constantly feeling and checking the size and shape of their wrist, abdominal area, arms, etc.). “Relentless” is the only word I can use to describe this behavior, and while it does not always extinguish immediately with refeeding, it certainly won’t extinguish without it. Often resolution requires the difficult combination of adequate and complete weight restoration and “tincture of time”. This hyperactivity takes patience on the part of parents and patience on the part of providers. Any therapist who has worked in a “very young” setting, such in our own day treatment unit knows what I am talking about. The younger age groups can even exhibit episodes of contagious hyperactivity that challenge the most experienced providers. But remember, this is par for the course of early onset anorexia.
Watch, re-feed and forgive.