This morning I was reading a mother’s cry for help on Laura Collins’ blog “Around the Dinner Table.” The scared mother spoke of her 10 year old daughter’s struggle and her own ambivalence about what to do. There were many supportive responses from other parents and although I have a lot to say on this subject, I did not chime in for fear of sounding self-promoting. Yet the very young child is Kartini Clinic’s special area of expertise. So I will take this opportunity to speak to this population in the hope that parents who are searching for help may find this information useful.
What qualifies as “very young”? I think of the “very young patient with anorexia nervosa” as a child between the ages of 6 and 12. We see them in a steady stream. I am particularly fond of the very young boy patient as I consider them to be the ultimate “paradigm busters”. When you meet a young boy, say 10 years old, who was formerly a robust little hayseed, who lived in the country, who played baseball with his friends, who had no interest whatsoever in fashion or thinness, whose parents were loving, supportive and “normal”, you know you are looking at a perfect example of why anorexia nervosa is not the result of media pressure nor neurotic parenting, and never was. I remind myself, looking at such a little man, that the first medical description of anorexia nervosa by Richard Morton in 1689, was of a boy and a girl.
The exact presentation of illness in humans often varies with the age of onset. For example, in a newborn with overwhelming infection there may not be a fever, in fact, the patient could have a lower than normal temperature. An example of differing presentation from the world of chronic illness might be the situation with rheumatoid arthritis, where the standard adult presentation can vary widely in children in terms of any fever, joint pain and even laboratory results. Pediatricians have long known that children are not just small adults. Their biology is in development–it is changing–and thus they may have the very same condition as an adult, but be missing features of the illness we would expect to see in an adult. This is why, as Dasha Nicholls famously says: “Children into DSM don’t go.” (Nicholls, Chater, Lask: International Journal of Eating Disorders 2000 Vol. 28 Issue 3). DSM is the diagnostic and statistical manual of mental disorders, the standard reference guide used to describe and categorize mental disorders in adults.
For this reason we do not need to be surprised that the very young patient may present with what clearly acts like anorexia nervosa (refusal to maintain body weight, to eat adequate amounts for health, an imbalance between energy expended and that taken in), yet may be missing important features.
What can be missing? In the adult form of the illness, in addition to refusal to maintain body weight, we see an intense fear of fat or becoming fat, a disturbance in the way shape or weight is experienced (otherwise known as feeling fat when you are not) or denial of the seriousness of weight loss/failure to gain weight and finally, a lack of menstruation.
I think we can all agree that the lack of menstruation is a diagnostic criterion that makes no sense in the very young girl, not to mention the boy of any age. So what else can be missing?
The entire “fear of fat or becoming fat” —the hallmark of the adult form—can be absent. This psychological feature requires an adult-like psychological state. The very young child may be unable to formulate their fears in this fashion. They may not experience them or may not be able to give recognizable voice to them, yet their refusal to eat, or to eat enough, is as fierce as in the adult. And terrifying to their parents.
To repeat: while some very young children will present with the full-blown adult form of anorexia nervosa right from the start (“I’m fat, you’re making me fat, I don’t want to eat any fat,” etc), many will not. They may just appear sad. They may refuse to eat, but refuse to tell you why. Commonly they will focus on pain or discomfort in their “stomach” made worse when the parent tries to re-feed them. They may not know why they can’t eat; they may just cry.
As anyone can sympathize with “stomach ache”, this particular presentation causes a lot of anxiety and anguish in parents. Yet it cannot be allowed to interfere with the urgent need for the child’s weight to be restored, since without weight restoration, you will get nothing.
Young children who present with anorexia nervosa need to have their growth charts examined by someone who understands growth and development. I was dismayed to read in the blog cited above that a doctor had looked at the growth chart of a child who was short and said she was “on the 75th percentile for weight relative to height”, triggering (apparently) intense efforts on the child’s part to lose weight and get out of this “heavier than tall” category. When you are very young it does not take prolonged inadequate nutrition to impact your growth in height. If you have begun puberty, it may fully regress. The obsession of current physicians and the media with obesity has prompted otherwise very smart doctors to minimize weight loss and growth stunting, because “at least they’re not getting fat”!
Normal growth is more important than being above the 50th percentile for weight. We are all of varying height, weights and weight-for-heights categories. Getting this right will be critical to adequately treating early onset anorexia nervosa. If your current provider does not understand how to do this, find one who does.
