For the purposes of this discussion I am somewhat arbitrarily defining “very early onset” as 12 years and younger. Despite what you might think, this is not synonymous with “pre-pubertal onset” as Caucasian girls on average begin breast development – and the hormonal changes associated with this – at about 10 ½ years of age. Boys on average begin to go through pubertal changes about two years later. And for girls and boys of African and Hispanic heritage average ages for these changes are even younger. These bodily changes will be stopped in their tracks by the onset of anorexia.
Early onset AN is sometimes referred to as “pre-menarchal” onset, especially in the British literature, but this is not a useful term, since menarche (first period) will be delayed in AN and would lead you to include in this category girls as old as 16 and would leave boys out entirely.
Strictly speaking, very early onset AN would encompass only children whose physical exam classified them as “Tanner Stage I”, i.e. no breast budding yet and no pubic hair. But since mental health professionals and RDs typically do not physically examine and describe patients in this manner, this might be somewhat impractical. You’d be surprised (dismayed) to learn that even many physicians write “deferred” of the breast and pubic exam, even though this information will eventually be vital in understanding a child’s progress through this illness.
So what to call “early”? In the United States, anyway, children 12 years old and younger are typically still attending elementary school, whatever their Tanner stage. Elementary school children are treated as children by our society. Parents are, ideally, still “in charge” at home, teachers still have considerable authority, as do “grown-ups” in general. This psycho-social reality impacts treatment of children with early-onset AN a lot.
Children are not miniature adults. Pediatricians out there reading this will think “didn’t we already establish this in the 1950’s?”, and they would be right, but in the world of mental health and specifically eating disorder treatment, this is still somewhat of a lesson unlearned. Many eating disorder programs, whose treatment paradigms were initially established for adults, have for a variety of reasons (some good, some not so good) taken on younger and younger patients and applied their adult-model treatments to these children. First such programs advertise that they “treat adolescents and adults”. Then they begin to admit 14 year olds, then 13 year olds, and so on.
This is unfortunate in my opinion, because not only does it tend to place children in developmentally inappropriate settings with adult-oriented providers, but the treatment paradigms are all wrong. I have spoken to colleagues whose programs have made the decision to accept ever younger patients, and who are aware of the shortfall, but powerless to change it. Some adult colleagues may be uncomfortable treating young children, but are not in a position to refuse.
So what are the differences in presentation/treatment/prognosis in children 12 and younger? Please keep in mind that there is relatively little research and literature on this age group, and until recently, most papers recited the belief that AN usually presents in young adulthood or adolescence. Therefore, in this blog you are getting the benefit of my personal clinical observation of the many hundreds of young kids with AN that we have treated at Kartini Clinic, where we specialize in the very young patient. We love this young age group and have a lot of experience managing it, but let me tell you: they give a run for your money!
Kartini Clinic was honored to be part of the drafting group in the DSM-5 for childhood eating disorder diagnoses. As such we were able to include language that acknowledged children with AN may present “atypically” or “typically”. Typical in this context would include obvious weight loss, refusal to eat enough to sustain growth and a persistent and irrational belief in being “fat” (despite all evidence) and/or becoming fat if they were to eat. Atypically would be with little or no weight loss, but failure to gain appropriately (remember, children are supposed to grow!), no apparent thoughts of shape or weight or fat fears, but a determined refusal to eat enough to accommodate their needed growth. Some children come late to such an assessment, some early. Unsurprisingly, if their illness presents “typically”, they tend to come relatively early (within months of onset) because weight loss in an average-sized little kid is very destabilizing, physically. When the illness presents “atypically”, however, they tend to come to us later, sometimes even a year or more after problems began. The most endangered little kid is the one who is/was “chubby”, because in the fat phobic environment of a typical pediatric or family practice office, weight loss in children who are perceived as overweight is in fact encouraged. Such children may be very, very sick before they are finally referred to us, often by the parents themselves, sometimes with tragic consequences such as irreversible growth stunting and cognitive deficiencies.
One thing we have noticed about many little kids with AN is how strong the movement/exercise component is for them and how little conscious control they seem to have over it. Believe me, this constant and compulsive movement/exercise can take extreme forms and be very challenging. Boys in particular are sometimes almost impossible to re-direct from relentless exercise, although some young girls can be like this, too.
By “exercise” I am referring to a spectrum of behavior which includes always standing: standing to read, to eat to watch television, to, at the more extreme end, frank running in place or push- ups on the floor in socially unacceptable places, including public places (i.e. not a gym). I have seen little boys drop to the floor in anguish, sobbing while they did crunches and push-ups before an adult could stop them, and then flailing about and hitting and scratching when their caretakers try to stop them. They are tormented with fears of “getting fat”. There can also be near constant jiggling of legs and arms. I think you can imagine how distressing this is for the patient, the parents, the nurses, the doctors, the therapists, etc., but it is important to understand that even in very severe cases of uncontrollable movement:
They can’t help it
This is not defiance, it is torment (for them)
It will eventually calm down with food to the brain, medication (Olanzapine, brand name Zyprexa), and tincture of time
Punishment is counter-productive and despair (for parents and providers) is not warranted. But when you treat one of these severely affected kids, you had better know what you are doing.
In the course of writing this blog, I asked Jessica Stumpf, Kartini Clinic’s art therapist, if she had anything to add to this description, and she reminded me of an important issue: insight. Young children, school aged children, typically do not have the insight they will later acquire; not because they are not smart enough, but because their brains have not yet matured. Prior to mid- to late adolescence (in some people even later) the ability to think abstractly is not well developed. Most information is processed concretely. Perhaps this is why younger patients are so comforted by structure, rules and adults taking charge. The point is, to expect a good therapist to be able to “teach” a young child “insight” about their illness (“Doctor, have you told her how bad this is for her?”) is a misplaced effort. Many younger kids, once they are refed, still have food anxieties which they cannot be “talked out of” using abstract cognitive techniques. They will need age-appropriate soothing skills.
In my professional experience, severe early-onset anorexia nervosa that does not respond quickly to outpatient treatment requires inpatient or hospital care on a specialized pediatric eating disorder service. Sometimes, during re-feeding, these children may scream that they want to die. In many places this results in a series of “safety” measures that culminate in transfer to the psychiatric ward. This is a mistake. These young children do not belong on the psychiatric ward (where they will be separated from their parents and allowed to restrict) as their “suicidality” is an expression of their eating disorder despair. They may need a sitter for times when their parents must be absent or are asleep (our parents have 24/7 access to their hospitalized child), and all sharps need to be removed. Their bathroom doors should be locked. Irrespective of such statements, they cannot be allowed to starve.
This brings me back to the original point that children are not miniature adults. No matter how adult AN is treated, where the law allows even deathly ill patients to refuse food, young children must not be allowed to refuse, nor should they be involved in life-saving decision making as if it were optional, no matter how “smart” they are.
An adult psychiatrist of whom I am fond, asked me recently whether or not we at Kartini Clinic “believe in force feeding” in the treatment of AN. Somewhat puzzled, I asked him “what do you mean ‘force feeding?’” He explained that he meant mandatory tube feeds for a child who refuses to eat. I said “Good Lord, yes.”
Caloric restoration, leading to prompt and adequate weight restoration, is the conditio sine qua non of treatment. If you allow a child to stay underweight and to restrict calories and fat, they will not get well. The brain must have food to process information, to heal. No amount or type of medication will make up for lack of food. No psychological interventions will be useful in the starved brain. And, in the same world where you do not ask a ten year old what they think the dose of antibiotic should be for their pneumonia, you do not ask them how many calories or how much food they are willing to eat. Or whether or not they are willing to eat whole fat dairy or other sources of dietary fat. You’re the doctor or parent; act like it!
Despite how challenging treatment of early onset AN can be, there is one advantage parents and providers enjoy: it has to do with the fact that young children crave a sense of safety from their adult caretakers. Children still want to be cared for, they want to feel that their environment is not out of control, they want to know that the adults are in charge of keeping them safe. Little kids sometimes ask me to repeat: “I know you don’t want to eat, but I am making you, because I am your doctor”. For lack of a better way to explain it, this allows them to calm those tormenting eating disordered voices by responding that they are only eating because their parents and doctors are making them. In our experience, this is powerfully anxiety reducing.
Remember, everything we know about anorexia nervosa of childhood, the kids taught us.
So when is medication indicated? This is a subject I have discussed at length elsewhere, and our psychiatric colleague Janiece Desocio RN, PhD, PMHNP has covered well in my book Give Food A Chance (now in its 2nd edition). Suffice it to say, we use medication to alleviate suffering. Nowadays we also do genetic testing to help us predict who will benefit from the types of medication we use, and who might be expected to encounter the side effects. We do not use medication in every patient.
It is commonly believed that early recognition improves prognosis for most diseases or conditions. This is principally because early recognition and swift action prevents the consequences of the illness from accumulating and compounding. An example of this would be the bone weakening effects of lack of estrogen or testosterone caused by semi-starvation when it goes on too long. What do I mean by “long”? Sometimes we see osteopenia (weak bones) after only months of restricting, but certainly if the restricting is not halted, osteopenia can progress to osteoporosis, which can be hard to reverse.
In a recent newsletter, we cited an article discussing new research that showed chronic anorexia nervosa causes methylation changes to the “cloud” of molecules surrounding our DNA, affecting gene expression and activity. This is what is often referred to as epigenetics. In other words the longer one is ill, the greater the epigenetic effects on mood, socialization, anxiety and the immune system. Children, who are developing their growth patterns, behavioral responses and immune system, are probably especially vulnerable.
So the moral to the story of early onset AN is this: don’t wait. If your child is losing weight, jump right on it. Whether you re-feed at home or in a treatment program, insist on weight restoration. Don’t let anyone tell you that psychological help comes first or that “they need to want to get well” before food will work. And especially do not tolerate practitioners who are satisfied with gaining a pound, then losing three, then gaining a half a pound over a few weeks on the grounds that “at least they’re not losing more.” Pull the plug swiftly on inadequate treatment! Here the Web is your friend, since you are as empowered as the next person to locate help across the globe. Talk to other parents online (in places like Around the Dinner Table forum) who have been through it, ask hard questions, quiz potential treatment providers about their specific experience with very young children.
Children are not miniature adults, please don’t let them be treated as if they were.