On Thursday November 29th I went with Laura Collins and the FEAST team to give "testimony" to congressional staffers about the plight of children with anorexia nervosa. It was an impressive experience to enter the Dirksen building where many of the senators (including our own Ron Wyden) have their offices. Senator Schumer (NY) walked past us; the walls and floors were stone and marble and dark wood, the ceilings twenty feet high, the plaster frieze was carved with symbols of the zodiac.
I was the third speaker (see text below). Before me spoke Dr Chavez from the NIMH about mortality rates for eating disorders and about how, given the life time 10% mortality rate (a very high number), there is little research funding. Then a young mother who had re-fed her seven year old daughter with anorexia nervosa spoke about parents taking charge of feeding and about how terrifying the experience can be. After me came Joan Riederer and her college-aged son Justin. They each spoke from their own perspective about the style of treatment that excludes parents from full participation even when they have medical guardianship, and about the tragic and unnecessary death of their daughter and sister Erin, who died of her long standing anorexia nervosa, alone and far away from her family. There was not a dry eye in the room. I'm glad I didn't follow that because I don't think it would have been possible to speak for a while.
The FEAST conference itself was recorded and further blogs will link to it. My own workshop (details in my next blog) on educating your pediatrician was very well attended, which was gratifying, and I'd like to thank all of you who had a chance to attend in person. I gave it in honor of the McKay family and at their suggestion.
Part One: How dangerous
Today we are here to talk about unnecessary and preventable death caused by a brain disorder affecting children as well as adults. I am a pediatrician and adolescent medicine doctor who has specialized in the treatment of children with eating disorders for the last sixteen years. In our specialized clinic we have seen over two thousand patients with eating disorders—and we are just one such center in the United States. Because I am a pediatrician I am focused on children and youth and have come here to tell you that the sorrow and grief caused by early mortality is magnified even further by what happens to the young people who do not die, but whose lives are stunted by starvation and under-nutrition. How can this be?
Here’s how it happens: most of the brain's cells are formed before birth, but most of the connections between the cells are made during infancy and early childhood. When you can’t concentrate and focus, you can’t learn. Anything that adversely affects learning impoverishes and trims these connections, which are essential to normal brain functioning. The “inability to focus and concentrate” almost universally reported by our young patients and their observant parents is a direct result of food restriction. And we are not just talking about the learning that takes place in school. The limbic system (a central part of the brain known to be affected in anorexia nervosa) controls emotions, attachment and memory; core features affecting what a child will be like as they grow up and – importantly – what happens to them later.
A child’s frontal lobes are the last to become connected. Major functions of the frontal lobes are judgment, insight, and impulse control – behavioral attributes whose under-development can lead directly to the depression, despair and eventual suicide reported in half of the ten percent who go on to die of these illnesses. Happiness, hopefulness and resiliency are necessary human traits in the quest to prevent a young person from becoming overwhelmed by despair.
In the past, pediatricians have assumed that only starvation during infancy profoundly affects the brain. However, more recent work on famine shows that malnutrition throughout childhood can affect brain development. Some studies have even challenged the concept that the effects of starvation on the growing brain are entirely reversible with later weight restoration. The spectre of irreversible damage to the brain of a child and the chain of events that can lead to death in a young adult brings us to the second point:
Part Two: Secondary prevention
We don’t know what actually causes eating disorders; the biology of these brain disorders is, to date, very poorly understood. Whenever that is the case, primary prevention is not possible. For example, we could not prevent tuberculosis until we knew that it was an infectious disease. That leaves us with what is called secondary prevention, otherwise known as early recognition and intervention.
It is clear from our clinical experience and that of other eating disorder physicians who see children, that even children as young as six years of age can develop eating disorders and begin to starve, slowly at first, with simple food refusals and more intensely later, with weight loss. When a child this young (6-12) has their brain growth stunted along with their physical growth, and this goes unrecognized, we may never be able to completely restore them to health. Educating pediatricians, nurse practitioners and family doctors to recognize the symptoms of early onset eating disorders is critical to secondary prevention. Educating the general public to the newer scientific findings that these illnesses are life-threatening brain disorders and are not caused by parents or by misguided ideals of thinness portrayed in the media, will be critical. Once the genetics and neurochemistry of eating disorders has been better defined, and we understand the mechanics of how this can happen to a brain, we can talk about primary prevention—prevention of the illness before it ever gets started. Until then we must focus like a laser on early recognition to prevent death and disability. And to this end, teaching parents, as the best observers of their own children, the signs and symptoms to be aware of, to act as an “early warning system” for allhealth care practitioners, sounds simple but needs a concerted educational effort. We ask your help in this quest.