By Julie K. O'Toole MD, MPH

I have decided occasionally to write about topics that may be of more interest to practicing physicians and other providers confronted with difficult or unusual cases related to disordered eating. This is one of those topics.

Food phobia of childhood, primarily seen in pre- or early pubertal children, was first described as such by Bryan Lask (pediatric psychiatrist) and Rachel Bryant-Waugh (psychologist) in the early 1990’s as a result of their work at Great Ormond Street Children’s Hospital in London. To my knowledge, with the exception of one article reporting work with a single young boy, food phobia has not been discussed as an entity in the American pediatric literature except under the general title “dysphagia” where it is likely to come to the attention primarily of pediatric gastroenterologists and otolaryngologists. In the adult literature it is usually referred to as “choking phobia”. More recently Dr. Lask has chosen to refer to it again as “functional dysphagia,” although we at the Kartini Clinic for Disordered Eating prefer the more intuitive “food phobia.” In our experience, pediatricians report they are often at a loss about what to do with these challenging patients. We are grateful to Drs. Lask and Bryant-Waugh for calling attention to this condition. Click here for the full article.

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.

Fasten your seat belt.

Determining ideal body weight in children who suffer from anorexia nervosa is complex. Pediatric patients cannot be treated like “little adults”. An example of this principle is the way medication is dosed in childhood. The right dose of an antibiotic for a newborn is different than the right dose for a two year old or for a 14 year old. And so it is for setting “weight goals” in pediatric eating disorder patients.

Bear with me then, because this is not simple. And not only is it not simple, but it is even more complicated and fraught with “special cases” than the following summary would indicate. Yet, I believe, parents can use it as a general guide.

A true discussion of goal weights cannot be separated from knowledge of a child’s developmental stage. Have they gone through puberty? If so, is puberty complete? Has breast development begun (if a girl)? Has she ever had a period?

Children, like adults, will fall along some kind of a bell curve of normal weights: the vast majority will be in the average range with some being in the “obese” range and some being in the “growth-stunted” range where the eating disorder struck at a very young age causing stunting of both height and weight (and probably brain growth). I will address these groups below:

Reporting on a new article

I just reviewed an article which should help us answer the question:  how much will my young daughter with anorexia nervosa need to weigh in order to grow normally again and to get a period?

First a few jargon words to know:

Menarche = the first menstrual period
Amenorrhea = no menstrual periods
Primary amenorrhea = never had a menstrual period
Premenarcheal = before menarche
Linear growth = growth in height

Ingemar Swenne of the Uppsala University Children’s Hospital published an article in the 2008 journal  Hormone Research.  To my reading the article looked carefully done with  results relevant to young girls with anorexia nervosa.  For that reason I decided to review the salient points for among our readership who may be interested in the subject.

To begin with, they studied only primary amenorrhea in young eating disordered girls, that is, girls who have not ever had a menstrual period.  The question was: how much weight gain was required to resume a normal growth rate and then begin to menstruate?  How could clinicians determine an “ideal weight” towards which to work, given that a young girl who has never had a period will also need to grow taller (and hence heavier).

Dr Swenne pointed out that “adolescent girls who present with an eating disorder before menarche  have not only lost weight but are also stunted in growth”.  In other words, they showed inadequate weight gain and a reduced rate of linear growth. I believe we can all agree that growth stunting is a bad thing.

Of particular interest was the finding that this slow-down in linear growth and slow-down in weight gain (even when no loss of weight had occurred) preceded the patient coming to an eating disorder clinic by years! In other words, by the time the parents and physician realized that the child was in trouble years had elapsed.  And if only weight loss (not just weight gain that never happened) is taken into account, parents can greatly underestimate how malnourished their child is. 

The study showed that it is not adequate to restore a child to their highest-ever-weight for the simple fact that, had they not acquired an eating disorder, they would have weighed more.  Repeat:  it is not sufficient only to regain lost weight.  This is an important point for us clinically, as some parents will become nervous if they think we are restoring their daughter to a weight “heavier than she has ever been”.

So how does one determine how much weight a young child needs to gain in order to restore normal growth and development?  This Swedish study emphasizes the inadequacy of “standardized targets”, sometimes called statistical “ideal body weights”, calculated from simple formulas related to height or to insurance tables.  The researchers found that relying on these “ideal weights” may result in the child never weighing enough, resulting in persisting amenorrhea (no menstruation).  This also reflects our clinical experience.

I have recently received some feedback about our food plan that impels me to add a few details. The food plan has been the backbone of treatment at the Kartini Clinic for many years, but there are some things you should know about it.

1. It was developed to enable families to feed their children without resort to counting calories or exchanges. The child chooses among real food items that have been counted already (by us). Many different food choices are available.

2. Within the confines of the food plan parents can cook traditional American food, if that is what their family likes, or Chinese food or Indian food or Russian food or German food, nouvelle-cuisine, French food, Japanese food…you get the picture.

Most of you will have heard me say that weight restoration is the cornerstone of treatment in childhood anorexia nervosa, without which you get nothing.  It makes sense, you say?  And yet we still get children referred to us who have been in hospital or residential centers and were discharged well below a restored weight—or even discharged weighing less than when they entered!  How can that be?  We gnash our teeth.

In my opinion it is a reflection of the general reluctance to accept that medical, not psychological interventions, must come first. A child must be weight-restored before medication, social support, psychotherapy, cognitive restructuring, etc. can have a fighting chance of working.  This reluctance to acknowledge the physiological takes many forms, depending on the stage of treatment for the child.

I have been asked many times to explain why I went into the treatment of pediatric eating disorders. Did I have an eating disorder myself?  Did I have a family member who suffered from one?  Does one of my three daughters or my son have one?  The answer to all of these suppositions is “no”.  I have written the following in the introduction to my book Give Food A Chance (to be published in 2008), written for pediatric providers and interested parents of our patients.

In 1980 I graduated from medical school in Aachen, Germany: an American “foreign student.” We had classes in every imaginable subject, the German medical system being extraordinarily thorough: in legal medicine, in forensic medicine, in psychological medicine, and in the more usual areas as well: pharmacology, neurology, pediatrics, surgery, and so on, covering diseases and conditions common and rare. But no one taught us about anorexia nervosa. We had a classmate who was afflicted. Everyone knew it—it was obvious: she was skeletally thin, the veins in her arms stood out like ropes, her lackluster hair clung thinly to her head, she rode around campus on her bike furiously, exercising, exercising, always exercising, and she was a fantastic student. But she was shunned socially, and the young male medical student she admired was appalled at the deranged appearance she found acceptable.  
    

In 1985 I finished pediatric residency in Honolulu, Hawaii, and returned to the mainland to begin the practice of general pediatrics. As a woman doctor I seemed to pick up several adolescent patients with eating disorders, but I was at a loss to really know how to help them. I listened to them, I pleaded with them, just like everyone else. I referred them to psychiatrists. They were lost to follow-up. In 1991 I joined a large pediatric practice in Portland, Oregon, and eventually I established an adolescent medicine practice there. At first there were a few patients with anorexia in this young practice, and gradually there were more. And more. Frustrated colleagues heard I was willing to take on the care of these young sufferers, deemed hopeless by many, and sent them my way.

Why research matters

We are all busy at the Kartini Clinic, from the front office folks who answer calls, take messages, deal with upset or even irate parents, to the business and management folks who definitely deal with scared, upset and irate parents and uncooperative insurance companies, to the doctors, the therapists, the therapist assistants ….. busy, busy. The core of all our work is taking care of kids. Then after a long day of taking care of kids, we try and balance this with our private lives. Nearly everyone at the Clinic has gone through some considerable schooling to be able to do what they do, some have even had interminable stretches of school. Most were glad to be done and get on with purposeful work. Leave homework behind. Read a novel instead of a textbook. Go for a walk in the woods instead of attending a class. They are clinicians or run a clinic, not academicians, why should they be involved in research?

Here it goes: my first blog at the age of nearly 58.
 
Yes that’s right, kids, if you are reading this, you now know how old your doctor is.

See those gray hairs? Cleverly disguised with color, they are the result of suffering, arguing, laughing and crying along with our patients and their families.  They are the result of being called to the hospital because a new child’s heart has stopped, or called to argue with parents who want to leave “against medical advice” because the “rules are too strict” despite their child’s obvious weakened condition. They are the result of worrying about our iop graduates who return to college far away and try to be “lost to follow-up”. They are the result of arguing with outside therapists who have tried to tell me that Parents DO cause eating disorders or that they are a “life-style choice”. They are the result of arguing with other doctors who tell me our patients are “just spoiled” and should “just eat” and shouldn’t take up a bed in the hospital reserved for kids who are “really sick”. And most of all they are from my own inability to always convince parents that the food plan—annoying though it is—really is their crutch, their support and their tool and as such should not be filled out in the car or waiting room, but should be respected as much as a bank balance sheet or driving directions.

It is my hope that in starting this blog I can:
1. become more human to my patients and families and share the challenges from my end
2. spread general information about childhood and young adult eating disorders to any and all readers
3. talk about what works at kartini clinic….and what doesn’t
4. share links to information and science as it becomes available to us, especially research with children and adolescents

to that end you might want to know how and why I got started treating pediatric eating disorders. This is certainly a most frequently asked question of me.

 I never had an eating disorder, I hope to never acquire one. I was a typical pediatrician who went on to specialize in adolescent medicine. Most doctors (especially women) who practice adolescent medicine wind up with a lot of eating disordered patients being referred to them by other, frustrated doctors.  This happened to me. I did the best I could, but it slowly became clear that I was going to need a whole team in order to really help these patients and that I simply could not afford to have my time together with them interrupted by being called to the delivery room!  So in 1998-- with the encouragement of steve nemirow-- shanna greene, office manager (yes, the one with the long curly blonde hair) and I left our pediatric practice to found the kartini clinic. And here we are.  

The first Therapist to join us was leslie weisner LMFT, who is now an old kartini hand.  We still see a very few patients from those early days, now grown-up, including patient “number 9”—you know who you are--, whom we love dearly.

Kartini clinic was founded to treat pediatric patients in the belief that parents do not cause eating disorders and children do not choose to have them. It was, and remains, my conviction that anorexia nervosa is a brain disorder with a strong genetic predisposition. Research, as we shall cover in future blogs, is beginning to bear this out.