Bulimia Nervosa - Kartini Clinic for Children and Families

Back To School And The Risk Of Relapse

September 28, 2017 by Morgan O'Toole-Smith

When you practice as long as I have in the field of childhood eating disorders, one thing becomes abundantly clear: there are cycles to the frequency with which patients appear on our doorstep for treatment — and on the doorsteps of all the other treatment centers as well. The trouble is, it has proven difficult to understand the peaks and troughs of these cycles and correlate them to much of anything. But there do seem to be a few tentatively recognizable patterns. And these peaks and troughs of admissions/referrals to our clinic encompass newly diagnosed patients as well as relapses of patients formerly in remission. In other words, when newly diagnosed patients increase in number, our own (existing) patients begin to do worse. No idea why this seems to happen.

An example of one of the patterns we see and believe to understand, however, involves the college-aged patient and Thanksgiving. Often, the Thanksgiving break is the first time parents see their young adult child after they sent them off to school in late August or early September. Hence, it is the first time they are aware of how much weight their child may have lost. For this reason we experience a spate of college-aged referrals around Thanksgiving — but more about that in another blog sometime.*

The other pattern involves the first few weeks after the start of school in younger patients: just about the time results of the great viral mixing of school attendance begins to hit the pediatricians’ offices, we seem to see relapses in some existing patients, in addition to those newly diagnosed. Within the first month of a new school year kids begin to present to us with weight loss and food refusal.

Of course, from the family’s point of view, this is just about the world’s worst time to get the news that school attendance will need to be put on hold for treatment, but there you have it: the child has lost weight, is often medically unstable and finding it difficult/impossible to eat at school or even at home without intense supervision.

I have often suspected that this apparent worsening of symptoms around the first month of school attendance is actually not caused by the stress of school (although I imagine it could be) but, rather, had its origins in mid to late summer, when wishful thinking took over.

What do I mean? Summer is a two-edged sword: the academic performance stress is reduced when school gets out, of course, but summer also represents a significant reduction in the day-to-day structure of a child’s life. There is more free time, there is more down time. Free time/down time is not our friend. The experienced parents of children and youth with eating disorders can tell you that lack of structure is hard for them. The structure of a school day is actually a boon and the “freedom” of summer a challenge.

So I think that kids often begin to struggle with their meals and even lose weight in the summer months and that is where the “wishful thinking” comes in. Rather than yank on the alarm bell, parents hope that school will normalize everything and treatment will not be necessary. The problem is, when you have anorexia nervosa, “lose weight, get happy.” And this apparent improvement in mood fools us into complacency. “It’s only a few pounds” lulls us into thinking the eating disorder will be satisfied with this. The kids enter school already on the (invisible) downward path, which within a few weeks becomes manifest as food refusal, hiding school lunches, social withdrawal, an increase in arguments at home about eating, etc. A few weeks later, when the degree of struggle can no longer be ignored, the family is in our office (or someone else’s) and we think “school caused this problem.”

All I can offer in the way of experienced wisdom is this: in a child with an eating disorder, all weight loss is bad. All food refusal must be taken seriously and treated immediately. Do not wait. The chances of spontaneous reversal are low, the chances of worsening high, with the nearly inevitable disruption of school attendance to follow.

Act early, act swiftly, act decisively. And salvage that school year.

Original publication date: 9/18/13
*Please note: Kartini Clinic no longer treats college-aged patients.

The Trouble With Accurate Eating Disorder Diagnoses

July 15, 2015 by Julie O'Toole

Almost anyone who works in a specialized field (such as pediatric eating disorders) spends a great deal of time thinking about diagnostic criteria for diseases and conditions. This is true throughout medicine and psychiatry, of course: is it type 1 or type 2 diabetes? Is it autism or pervasive developmental disorder? Is it bulimia nervosa or binge purge anorexia nervosa? Is it eating disorder not otherwise specified (EDNOS, a term no longer included in DSM-5) or anorexia nervosa?

As in other fields that deal with very young children, the patterns seen in adults can be present, absent, partly present, mostly absent… You get the idea. Children with rheumatoid arthritis, for example, may have all or most of the symptoms that an adult with the same disease would have, or they might present completely differently (e.g. Still’s disease) and their symptoms change over time. Children are not miniature adults.

The problems of diagnostic accuracy have been well described, not least by Dr. Thomas Insel, director of the National Institutes of Mental Health (NIMH), who writes about the “gap between modern neuroscience and contemporary psychiatry.” This gap means that in the field of brain disorders we are still living in the era of the 1700’s, when the great biologist Linnaeus developed a system of taxonomy to classify all living organisms from their external characteristics. If the flower looked one way, the plant belonged in the pea family (Fabaceae), if somewhat differently, in the cabbage family (Brassicaceae), etc. Since long before Linnaeus, physicians have classified diseases depending on the constellation of symptoms they could see with their eyes: if the patient was driven to exercise, restricted their food intake severely, and believed themselves to be fat, despite all evidence to the contrary, they had anorexia nervosa, if they were not underweight, binged on large amounts of food and then, panicked, got rid of it by vomiting, they had bulimia nervosa, etc. The human urge to classify, to organize, to arrange in patterns is strong and it has served us moderately well. But classification based on external descriptors or symptoms is about to be blown apart by genetics, molecular biology and imaging technology. Already the system of plant and animal classification developed by Linnaeus—amazingly still in use—has been altered by genetic information about the origins of living things.

Why does taxonomy matter? Does it matter? I would argue that it is in fact less important than the principles of treatment, especially in the world of pediatric eating disorders. For example, whether a child has anorexia nervosa binge-purge subtype, or restricting varieties of ARFID is decidedly less important than recognizing that they need more food! It does seems likely that prognosis could be different within and between diagnostic categories—for example, early onset anorexia nervosa may have a better or worse prognosis than ARFID.

Over the years I have become convinced that there are children, and especially teens, who have imitative forms of the condition we call anorexia nervosa (a brain disorder I hope we will one day see in neuroimaging). These would be children/teens who refuse to eat for psychosocial reasons. But which are which? You can’t tell by looking, that is for sure. And since the treatment is the same, it is of largely academic interest to try and tease this out. Only time and longitudinal experience with their illness will tell, and trivializing the suffering of a child or that child’s parents by saying they have an “imitative” form, could do great harm.

So until we have that biological marker, that lab test, that brain imaging study, that gene assay, we are stuck with the simple observation of patterns. Receiving treatment that works is more important than understanding why it works.

In the case of childhood eating and growth disorders we know what works: food and love. So for now we’ll have to stick with that.

Making ‘em Mad

August 14, 2014 by Julie O'Toole

I’m sometimes not sure whom I make madder: some kids, some parents, or some insurance companies!

Making kids mad:

Me: “Jill, help me understand why your weight would be way down this week?”

Jill (shrugging): “I don’t know. I actually exercised less and ate exactly what I was supposed to.”

Me: “OK. I guess your body is just telling us you need more food.”

Jill: “What!!?? No way! I refuse to have more food.”

Me: “Well…. unless you can think of something that didn’t go quite the way it was supposed to, we’re left with the inescapable conclusion that you need more fuel.”

Jill: “No I can’t”. Turning angrily to her mother “I warned you, mother. I will never accept more food. There’s 250 calories in a yogurt (guessing this would be my suggestion) and I will not add 250 calories to my day. I don’t need it! You can’t make me!”

A discussion about balancing intake and energy output fell on deaf ears and Jill stormed out the door. Mom waited behind.

“I think she is just sick of yogurt, doctor,” Mom said.

Me: “No, Nancy, it’s not that she is sick of yogurt. She told us what she doesn’t want: she doesn’t want ‘another 250 calories’.”

Nancy: “But maybe if she was offered other things….”

Me: “She could, of course, have other things, provided they contained the same quality and quantity of calories and the balance of fat, protein and carbs. But she won’t accept them either. Look at her food journal: she eats exactly the same thing every day, by her own choice. It’s not about which food we suggest, she just doesn’t want more calories.”

Making parents mad:

Me: “Looking at these food journals, Will and Petra, I wonder which of you eats with Tom for breakfast and dinner?”

They look at each other. Petra replies, “Well…. we’re both around. We put Tom’s breakfast on the table and he eats it while we are getting everyone else ready for the morning.”

Me: “But what do you eat?”

Petra: “I have black coffee. I’ve never been a breakfast person”.

Me: “But Petra, think of the message. You are in charge of Tom’s food and he has to eat what his treatment team has decided he needs. But if you fast while he eats, he will never believe that it’s ok to eat.”

Petra: “Well, doctor, I am telling you right now that I won’t eat breakfast because I never have and because I don’t want to gain weight myself….”

Me: “So let’s talk about family dinners, then. As you know, Kartini parents commit to family dinners. Will, you said you could be home at 6:30 every night, and Petra you said you could have dinner on the table at 7. It seemed like a good plan. But I notice on the food journal that this is not happening and Tom told me about how angry he got when he ate at 8 PM one night and 5:30, on his own, the next.”

Will: “Yeah, but when do I get to work out? I used to use the dinner time for my work outs. I have a high stress job. I need to exercise.”

Me: “well, if you work out instead of eating dinner with the family, think how it will make Tom feel. Also, your wife will have gone to the effort of putting dinner on the table….”

Will: “Well, not exactly. She makes dinner, but everyone eats separately because of our schedules. Mostly, the kids eat on the couch in front of the TV….”

*Sigh* Mom is already mad that she can’t restrict meals according to her old routine and dad that he can’t use the dinner hour to go to the gym. Family dinners are perfunctory, strained, and need the television to keep people in the same room. Where to start?

Making insurance doctors mad:

My medical assistant: “It’s Dr. Marvel from the insurance company for Adrienne, doctor.”

Me: “Hello Dr. Marvel, I understand that you’ve decided to recommend that PatientsFirst Insurance stop paying for the intensive outpatient level of care for Adrienne.”

Dr. Marvel: “That’s right. This kid weighs enough, in my opinion, and doesn’t need this level of care anymore.”

Me: “But Dr. Marvel, she has been sick for four years and in intensive outpatient for three weeks. Who gets well in three weeks? She is still substantially below her premorbid weight and has no period. Furthermore she is wracked with eating disorder thoughts and guilt. She has just opened up in group about processing these feelings.”

Dr. Marvel: “Right. But she weighed too much in the first place. According to insurance tables, she should weigh even less than she does now.”

Me: “Well how do you explain her amenorrhea?”

Dr. Marvel: “just give her a year. Maybe it will come back. Besides, we don’t see that your family therapist is focusing on the real issues. For example, why does the kid choose this eating disorder as a way of expressing her distress in the first place? What role have her parents played in this? I see that they went through a separation a few years ago. Why isn’t that be focused on in family therapy? How is their dysfunction maintaining her eating disorder?

Me: “Dr. Marvel, parents don’t cause eating disorders. I would be very unhappy if our family therapists did ‘work’ with the parents that suggested that they did’”.

Dr Marvel: “That’s just your opinion. Anyway, she is weight restored and so I can’t authorize this level of care.”

Me: “No one can tell how severe an eating disorder is just by looking at insurance chart weights. This child is suffering terrible eating disorder thoughts and the family is just learning how to support her. If you won’t authorize more treatment, I guess you will have to recommend according to your conscience.”

Dr Marvel: “What do you mean my conscience? I don’t appreciate you saying that. What does that have to do with it?”

Now, actually, in this case I guess it’s more about them making me mad…..

Can I Tell You About Eating Disorders?

July 25, 2014 by Julie O'Toole

Have you ever wondered what to tell your other children and family members about your child’s eating disorder? Have you ever wished you had a child friendly, succinct and upbeat resource to share?

Along comes a small book to be published shortly from from Jessica Kingsley Publishers, written by Bryan Lask and Lucy Watson called Can I tell You About Eating Disorders? This little book is apparently one of a series of books written about what the authors refer to as “limiting conditions” such as ADHD, anxiety, autism, Asperger’s syndrome, dementia, and diabetes, among others. It is illustrated by Fiona Bromley.

The book’s introduction states it was written for children ages 7 through 15 years, and its tone is indeed easy to understand and upbeat, but the content is sophisticated and the presentation would not be offputting for adults seeking to understand the various eating disorders from a child’s point of view. The book covers more than just anorexia nervosa, which some of you will be relieved to find out. A group of children are introduced in the book, for example: Alice, who discusses her anorexia nervosa; Freddy, who has food avoidance emotional disorder (FAED); Beth with bulimia nervosa; Francesca with functional dysphagia (what we at Kartini call “food phobia”), and finally Sam, who has selective eating.

Nothing has been more controversial and argued about recently than the terminology used for childhood eating disorders. Controversy was only partially addressed in the new DSM 5, and American readers may be puzzled by the differences in terminology. Dr. Lask and his colleague Dr. Rachel Bryant-Waugh have written extensively on an eating disorder they refer to as food avoidance emotional disorder (FAED). For discussion of this I would refer you to Lask and Bryant-Waugh’s book on childhood eating disorders, Eating Disorders in Childhood and Adolescence.

The same two doctors originally described fear of choking or vomiting leading to absolute food refusal, and they called it “ food phobia”, a term which I have retained in favor of “functional dysphagia” as it is called in this book. I dislike the word “functional” with its history of implied volitionality, and have chosen to retain the older term. But the reader of my blog should not be confused, functional dysphasia is food phobia, and the description little Francesca gives of her concerns is well worth reading.

The children who speak about their conditions in this small book discuss their symptoms, their feelings of isolation, the difficulties they have explaining their issues to their friends, their struggles at home, and the quest for an understanding of what causes their conditions. There are a lot of British-isms throughout the book, as might be expected, but I don’t imagine they will put off the average American reader. After all, we all grew up on Winnie the Pooh and no one seemed to mind.

This book is available today through the publisher and through Amazon as a Kindle edition, or in paperback in late August. I know I shall be ordering some.

But For The Grace of God

March 13, 2014 by Julie O'Toole

When I was a girl, my brothers and sister and I had the usual kid-like responses to the world around us. One of them was innocent astonishment at those less fortunate than we: the man at the bus stop without a leg, the “retarded” kid on the playground, homeless people. If we were unwise enough to comment on them negatively in our father’s presence we felt the full force of his disapproval, the full weight of his teaching. “When you see someone less fortunate than you, you are never to comment out loud,” he told us, ”you just look inside yourself and say ‘there but for the grace of God, go I’… and then you start figuring out how you can help them.” And you better believe, we listened to our Dad.

It’s easy to harbor secretly a conviction that we’re more fortunate because we’re somehow “better”, and, conversely, to believe – somewhat magically – that we can also call misfortune down on ourselves by “unwise choices”. It makes good pop psychology, but I believe it would not be a stance adopted by wise men and great teachers; not by Gandhi, not by Jesus.

We swim in the sea of our own great good fortune in this country: we have historically unprecedented wealth and prosperity (even the more humble of us). Our homes are clean; our water is clean; we have free public education; we have not had a war on our own shores in a very long time. Is this because we are better than everyone else on the planet? No, just more lucky.

Other cultures understand and acknowledge the role of luck. Take for example, contemporary Chinese culture. I see the Chinese as a pragmatic culture. They revere the role of “luck” and talk about it all the time. They recognize that some of us are lucky and some of us are not. They do not mistake luck for virtue.

I have had many occasion to think about this in my career as an eating disorder physician. I cannot tell you how often I am told by stressed, scared parents: “I don’t want to go to parent support group. Those people’s problems are worse than mine.” Or sometimes, “I don’t want my child in the program with those other kids. My child is different, he/she is not as sick as the others.”

It can, of course, be hard to participate in a group of other parents going through the same or similar issues as we are, to sit and acknowledge that we are devastated that our child could become ill enough to need hospitalization or the Day Treatment Unit, to count ourselves among other humans, hammered by circumstance. It can be hard to acknowledge that we are no better than other people, and to do this when we are feeling frightened, vulnerable and — often — guilty.

One distraught mother told me, “I know you’ll hate me for this, but I don’t want to go to parent group. I don’t want to hear other people’s stories. It’s bad enough. Some of their kids are much sicker than my son. I don’t want to have to deal with feeling sorry for someone else.” I wanted to let her know that if it was true that the other children were sicker than hers, then she could take a deep breath, channel my Dad, and whisper “there but for the grace of God, go I”.

In parent group, as in life, to share is human, to support is divine.

Back To School And The Risk Of Relapse

The Trouble With Accurate Eating Disorder Diagnoses

Making ‘em Mad

Can I Tell You About Eating Disorders?

But For The Grace of God

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