Julie O’Toole, MD joined us for an interview on her book, Give Food A Chance: A New View on Childhood Eating Disorders, second edition. What follows are our questions in italics, and her thoughtful answers.
For whom is your book written?
As mentioned in the introduction, I originally wrote the book for pediatric providers, but at the suggestion of my son, Morgan O’Toole, Kartini Clinic CEO, I revised it to be primarily for parents. It can be a challenge to write for lay readers in a way that is readable and useful, as well as useful for any providers with whom parents might wish to share it. I hope I met that challenge. To answer in two words “For whom did I write it?”: for parents.
Why is it important for professionals working with children with eating disorders to diagnose a condition as accurately as one can rather than say the individual has an “eating disorder?”
Accuracy in diagnosis is always important in medicine. Right diagnosis = right treatment, in general. But this can be carried too far since we have no “blood test” to distinguish between the various eating disorders. And, the biochemistry of these brain disorders has not yet been elucidated. This means we are using descriptive science only to make a diagnosis and this limits the accuracy of any distinctions we make between the eating disorders. Relying on descriptive observations was the state of all biology until the twentieth century changed that. So, you can see how far behind mental health, brain science lags compared to say, cancer science. But, we will catch up.
What does heritability mean when it comes to eating disorders?
To use a lay term, you could say heritability means “it runs in families.”
Please speak to the necessity of “unity” within the treatment team.
Unity within the team speaks for itself: the team has to be unified in its approach to children with eating disorders. In addition, the team needs to be up-to-date, science informed, loving, and family-oriented. Equally critical, though, would be parental unity with the team. If that is out of whack, the child is placed in a tug of war between treatment providers and one (or more) parent. How can this work? Parents and providers must be in alignment or weight restoration will fail.
“Ordered eating is the single greatest (natural) medication we have to control anxiety while achieving necessary weight goals.” Please speak to this statement relative to the Kartini Clinic Meal Plan (KCMP).
The KCMP is a tool we have developed to cover several necessities. It consists of real food, cooked and eaten at home with a family. It relieves parents (and, OF COURSE patients) of counting calories, grams of fat, or calculating exchanges. It is highly culturally adaptable and can fit a Chinese or Japanese style of eating, a Mexican food style, a French, German, Russian…you get the idea. And yes, it can be gluten free or accommodate other dietary allergies. It is emphatically not a diet. No one, regardless of their weight, is ever dieted at Kartini Clinic.
The very ordered nature of the KCMP acts as an anxiety reduction tool for our patients. As we put parents 100% in charge of food and meals, our pediatric patients are relieved of the necessity and anxiety of calculating and deciding how much to eat. The youngest ones often tell us how relieved they are to “tell their eating disorder” “I wouldn’t eat, but they are making me. I have no choice.” There is no fiction that we are eating to appetite, we aren’t. We are eating to medical necessity until appetite can self-regulate, usually many months to years later.
This ordered nature of the KCMP also helps undermine any postprandial hypoglycemia certain patients may suffer during re-feeding, it helps with satiety cues to the brain, and it is structured so the team can go up or down on the energy intake to suit individual patient’s changing needs. It does not include any fast food because it is a plan to “eat for life.” People can eat fast food or processed food if they like, but they won’t have learned it from us. Our families trust us to help them. We feel a responsibility to offer health-promoting advice, since we are not random people on the street. We are medical providers and our families look to us for science informed recommendations.
The KCMP does not include desserts or sweets (“hyper-palatable foods”), not because there is anything wrong with desserts or sweets, but because during the process of re-feeding a patient with these severe and often life-threatening illnesses is learning to eat in a way that does not lead to problems with blood sugar, later excessive weight gain, or even bingeing. There is substantial science to inform this approach, and I have blogged about it extensively in our website. But most people do not inform themselves about science when it comes to food and they do what they “intuitively” think is right. Or, they do what they have always done. That’s fine, but as providers we answer to a higher scientific standard than that, and our families trust us to give advice their grandmother and friends might not. We try to adhere to abstinence from hyper-palatable foods for about a year and gradually re-introduce them. Interestingly, this is the most controversial aspect of the KCMP.
Many, many young patients later write to us to tell us that the KCMP was the key that unlocked a return to normal living for them.
What is food phobia?
Food phobia is the sudden onset of refusal to eat, and/or swallow from a stated fear of choking or vomiting, which is usually preceded by a choking or vomiting episode, or witnessing one. It is not related to anorexia nervosa and, prior to the onset of food phobia, the child ate normally.
You support not discussing a patient’s weight with him/her. Why?
Anorexia nervosa and bulimia nervosa are brain disorders. The brains of persons with these conditions focus relentlessly and illogically on weight. If you discuss weight numbers with them that is all they will hear. And the powerful delusional belief that their weight is all that matters about them will be reinforced. To paraphrase Jonathan Swift: you cannot reason someone out of a position they did not reason themselves into in the first place.
Remember, our patients are children and teens, we are not adult providers and do not make any recommendations for adults. Having said that, though, I think we would, all of us, do better to de-emphasize weight in our daily conversations. Who cares what we weigh? It’s who we are that matters. That is a message for everyone.
Can you please elaborate on the various disciplines included in your Kartini Clinic treatment team and the members’ roles?
Our treatment team has evolved over the years and we hope to keep evolving. If I had a magic wand our team would include a geneticist, a bacteriologist, a sleep doctor, a naturopath, a masseuse and a magician. The science of eating disorders is evolving and our determination to treat the whole person and not just individual manifestations of illness routinely takes us in directions we could not have anticipated ten years ago.
Currently, our team includes pediatric physicians who manage our weight restoration 2.0 (see my blog), metabolic labs, meal plan, and medications, as well as pharmacogenetics. We have a psychiatric nurse practitioner versed in pharmacogenomic guidelines, the meal plan, and psychiatric medications. We have a team of family therapists who act as family advocates and educators and help with the meal plan. We have a team of milieu therapists and therapist assistants who live with the kids everyday in the partial hospital (PHP or day treatment) program and who eat with them. We have a registered nurse who supervises medical care and meal plans and helps in the hospital as well as the PHP and outpatient programs. We have a team of chefs who cook on site for our kids and for us and who are world class improvisers on the meal plan; they also source our fresh ingredients as locally and organically as is possible. We have a hypnotherapist who does individual work with a select few of our patients. We have medical assistants who weigh, measure, hug, and listen to our kids and who are available by phone when the doctors are busy with patients. We have a designer who helped make our new clinic what it is and who is alert to any evolving needs for comfort and safety in our physical plant. We have an art therapist and a movement therapist who work with the PHP kids daily. We have two school teachers who keep our patients in the PHP program on track with their school work and who help with a return to their academic and social life. We have front office staff who help families organize their schedules. We have a business office and insurance utilization review coordinator dedicated to helping families navigate the onerous details of American health insurance (believe me, when it’s your child on the line this is as important as the doctors and therapists are). We have intake coordinators who speak to families seeking help and who are the first responders when a doctor or parent calls in desperation or inquiry. We have a parent advocate, a former Kartini parent who went through the program herself. We have a human resources expert–because humans are a challenge to keep on message and happy. Finally, we have a CEO who is much like the conductor of a large orchestra, without whom the whole symphony dissolves into separate parts and, hence, the music would be lost.
I mention all these players from all departments of our treatment team, because there are two overriding requirements for Kartini Clinic staff at all levels: they must all understand our meal plan and they must all be able to love our kids.
About the author –
Julie O’Toole, MD, MPH, CEDS is founder and Chief Medical Officer of Kartini Clinic and is a board certified pediatrician who has been in private pediatric practice for more than two decades. She is a member of the American Academy of Pediatrics, the Society for Adolescent Medicine, NEDA (National Eating Disorders Association), and is a certified IAEDP provider.