Kartini Clinic is a medical and mental health treatment facility dedicated exclusively to the treatment of eating disorders in children and young adults. Kartini Clinic take a medical approach to the treatment of eating disorders such as anorexia.
See something, say something is what the anti-terrorist watch tells us at the airport and in public spaces. When people take individual and collective responsibility for reporting whenever they see something potentially dangerous, something not right, it’s possible to prevent catastrophes.
An alert went out on the AED (Academy of Eating Disorders) listserv from Wendy Oliver-Pyatt, MD who had caught wind of a weight loss study recruiting subjects in Australia under the auspices of Children’s Hospital Westmead (Sydney) and Monash Medical Centre (Melbourne). The lead investigator is Professor Louise Baur; the Sydney Children's Hospital Network Human Research Ethics Committee approved her proposal.
I did not respond in great detail on the listserv, except to protest children being dieted in general, as I had not yet seen the actual proposal. But now I have seen it. For those of you who wish to read it in its entirety, here is the link.
First, let’s be clear, this is not a study for consenting adults which includes some teens, it is a study designed for children and adolescents. The youngest participants will be 13 and the oldest 17. They are looking for the equivalent of a 5% reduction in body weight in an adult or 0.12 point reduction in BMI z score in an adolescent. They say nothing about the sustainability of this weight loss, just that the fact of it will be considered a “successful endpoint”. We all know that dieting causes weight loss in the short term, but nearly always fails in the long term, so how is this progress?
The study lasts an entire year—which in my view is a very long time to starve a dog, much less a child. You have to have a BMI of between 30-45 to participate, which means that someone - likely several someones - has identified you as “fat” with all the psycho-social ramifications of that. A plethora of lab tests and frequent checks by a dietitian make it look medical, but I do not see pediatricians or adolescent medicine physicians referenced anywhere in the protocol. The dietitians are going to weigh the kids, but no one is checking their pubertal status, which matters a great deal when assessing growth and development; they measure their blood pressure but do not mention monitoring their menstrual status.
So if the teen-aged girls stop menstruating with weight loss and dietary restriction, would that still be a successful outcome?
Incredibly, the year-long study starts with all of the children being taken down to an 800 kcal a day, very low fat (less than 20%) diet consisting of “meal replacements”. Study authors think they will have an attrition rate over the year of 30% -- I think it might be closer to 90% (run, children, run!). This painfully low level of initial food intake will last one month (4 weeks) for everyone, after which the subjects will be randomly assigned to one of two arms: the Modified Alternate Day Fasting arm and the Standard Hypocaloric Diet arm.
In the alternate day fasting arm the children will eat 300-600 kcals/day for three non-consecutive days a week and a “healthy diet” not restricted in amounts for the others. The “healthy” bit means they will be “coached” to adhere to the Australian Dietary Guidelines which, if you look at them, state that one should only eat “small amounts of fats” and “mostly low-fat dairy.” Wow! Didn’t they get the memo? Does anyone in the government actually follow the science as it evolves? Children need fat to grow, or as one researcher points out: “Long-term dietary deprivation of (n-3) fatty acids results in measurable changes in the visual and neurological function of primates (Neuringer and Connor 1986).” News flash: we are primates.
There are so many worrisome points (e.g., how does a 13 yr consent to this study?) it is hard to know where to begin, and as I read on I found myself racing from one point to another, dizzy from the effort. Those children who were randomized to the non-fasting arm, or the “standard low calorie” arm as they put it, eat a diet consisting of 1434-1673 kcals/day at age 13 to 14 or 1673-1912 kcals/day for those 15 to17 years of age. Slim pickins! This so-called “healthy” diet is “high fiber” (> 30 gms/day), “moderate” carbohydrate and “moderate” protein, no mention made of dietary fat.
And the psychological “support”? Let’s remember these are kids and now they are very hungry kids who are already shamed by their size/weight and doubtless would blame themselves for any “failure” to comply. For support they see a dietitian at week 20, 26, 36 and then, as “additional support”, receive an email, text or phone call lasting 10-15 minutes at weeks 18, 24, and 48.
You have to ask: they receive support to do what? Stick to the diet?
And don’t be fooled by a raft of psychological tests administered: the Body Appreciation Scale, the EDE-Q, and various quality of life questionnaires, self-esteem questionnaires and depression questionnaires. These are designed to help the study, not the kids, as it merely reports their symptoms, but cannot address them. Nor do I see a protocol for what to do should severe psychological distress arise as a result of the semi-starvation.
All of this is reason enough, in my view, to refrain from allowing your child to participate in a dieting experiment. Try it out on yourself for a month and see what I mean. Now imagine being a 13 year old kid who weighs 250 lbs and who has to live with hunger every day of their life for a full year, at school, on the playground and at home and who then, after all that, “successfully” weighs 237 lbs.
And here’s one more pressing reason not to allow it: it’s cruel.
So I have seen something, and I’m saying something: cease this madness and end this appalling and unethical experiment on children. Please join me. Share this with your colleagues, friends, and elected representatives (if you’re in Australia). Let’s speak up and speak out. And if the authors of this study believe we have misinterpreted their intentions, let’s have an open, respectful, scientific discussion about the merits, before a single child is enrolled. Thank you.
I was so struck by the discussion I heard on the radio that I had to pull over to write the words down: “someone who loves you is at home cooking for you.”
In the social avalanche of discussions online, on-air, on-screen about fat/weight/fitness (largely misplaced and often futile) I frequently hear blame placed for our increasing girth on families and individuals being very “food focused”. We are admonished not to equate food with love.
What? Food, its procurement, its preparation and the sharing of it are love…in the deepest, most tribal, most biological sense.
Across the animal kingdom and certainly with humans, adults work all day to bring food home to their young. Somewhere in prehistory humans learned to cook their food, increasing its nutritional availability, storage potential and safety. And the smell of cooking, especially over a fire, as in grilling outdoors, is profoundly attractive to us. If you have been raised principally on rice, the smell of rice cooking is deeply familiar and elicits hunger and pleasure cues, especially when the aroma of garlic and ginger as they hit hot oil is added to it. In other households, the smell of bread baking, of meat or vegetables coated with olive oil roasting in a hot oven is similar. Ever come home to the smell of chocolate cake baking?
A lovely young woman with a demanding professional job told me the other day how gratifying, how comforting it was to come home knowing that her husband would have been making dinner for her, to enter a house that smelled not of air freshener or aroma sticks, but of food being made for the love of her, for the love of family. It doesn’t matter if the person cooking for you is your husband or your wife, your friend, your mother, your father or a grandparent. What matters is that it is done for the love of you.
At Kartini Clinic we have spent years trying to convince busy modern families of the power of food cooked at home, the power of sharing the effort and the gift. Not only are family meals less expensive and more healthful, they promote togetherness and offer an opportunity to just talk to each other, free of distractions.
For many people today the Holidays are some kind of a mine field where they see themselves picking their way through “temptations”: cookies, candy, sauces and pies. For a moment they throw caution to the wind and suspend their obsession with weight (falsely disguised as concern for ‘health’) and then experience a guilt they cannot keep from talking about.
It’s time, I think, to refuse to engage in this way. Enjoy those cookies, that glazed ham, the deep yellow mashed potatoes dripping with gravy! Be grateful that you can. Be proud of what you have made possible for yourself and for others. Rather than feel guilty about partaking of the abundance of our lives, resolve instead to try and share that abundance next year with those who have less.
Take a deep breath near the kitchen, put the kettle on to boil, stick your finger in the cookie batter and lick it off; close your eyes to experience food and home. For if there is one powerful thing we can be grateful for, it is that someone who loves you is at home cooking for you.
Your child has been diagnosed with an eating disorder by one of the doctors at Kartini Clinic. Whether this is a restricting disorder with fear of fat, a bingeing and purging disorder or what we call ARFID (avoidant restrictive food intake disorder), it matters little. What matters is that the prospect of treatment is new and intimidating to you.
Before treatment was decided on, you may have struggled with typical and understandable ambivalent feelings: are we over-reacting? Are we under-reacting? Is this our fault? Will the doctors and therapists blame us? And of course: how on earth are we going to rearrange our lives to accommodate family-based treatment?
Step one: take a deep breath. We will walk with you through all the details of treatment. We will take one step at a time and help you gain confidence in the process, which many families have been through before you, and confidence in the treatment outcome, which is growth and healing.
Step two: be gentle with each other. Fathers and mothers may react very differently to the information that their child is sick enough to warrant treatment. Often (although these roles certainly can be reversed!) fathers cope with their fear by focusing on the financial picture for the whole family. This is not uncaring, it is responsible. Every fiber of being in the other parent may be screaming: who cares about the cost? Just treat my child! And while this is understandable, we are all grown-ups here and we are going to have to find a way—together-- to help you keep a roof over your family’s head, pay for health insurance, keep your job and care for other children in the family. So take a second deep breath and listen when our insurance professionals talk. Their job is not to place barriers in front of your child receiving treatment; they are going to be at your side advocating to knock those barriers down. It’s not cold and calculating to listen as they outline your insurance benefits, it’s practical. Take notes if you can, put your smart phone on “record”, if you wish, and take the card they offer you to contact them later when you can clear your head. Knowing you have people truly on your side can decrease your sense of panic.
Step three: Let’s talk about safety. If your child is terrified of treatment (they’re going to make me fat! I’ll kill myself first!) spend some time before you leave going over a safety plan with our doctor. Are there guns at home that are not locked up? Who will make a plan to take care of this immediately? Are there Costco-sized bottles of Tylenol and Aspirin at home? Lock them up too. Can one of you sleep with her/him or at least sleep in the same room? When you take them anywhere in the car, if they are upset or have made threats against themselves, put them in the back seat with the child locks on. These are some examples of simple plans you can make together. Knowing your child is safe will decrease your panic.
Step four: understand the nature of eating disorders before you take one step out of our office. What I mean by this is that all biology and research point to the fact that eating disorders of every kind are brain disorders and can run in families. Knowing this helps you internalize the most important message of the day: parents do not cause eating disorders and children do not choose to have them. Your child is not “doing this”, it is “happening to them”. It literally does not matter whether or not you have talked negatively about your own weight, have fought with your spouse, have been divorced amicably or horrendously, or have the “perfect family”; you could not cause an eating disorder in a child any more than you could cause autism. Knowing that no one at Kartini Clinic will blame you can also decrease panic.
Step five: be firm but gentle with yourself and your child. Tolerating our own children’s distress is far and away the hardest thing about treatment. Their pain is our pain---no, it is worse than our pain. But only real healing will ultimately take away their pain.You cannot do so by hedging about the need for treatment or eating or weight stabilization. “As your parents we have decided to get treatment for you and for us, and we are going to start now.” Calmly. Lovingly. Firmly. Remember those temper tantrums as a toddler? Deep breath, and ignore. The certainty of doing the right thing can decrease panic in both you and in them.
Step six: make your orientation appointments, your family therapy appointments, your nurse appointments, your medical appointments and attend parent group. Though you may feel like you are thirsty and trying to suck on the end of a fire hose, ultimately more information and more support will make the process go faster and the outcome more assured. And finally, the last step.
Step seven: educate yourself. Kartini Clinic providers do not expect you to know what to do, what to say and whom to tell right out of the box. You will want to know “why” and we encourage this. Why do I have to eat on the meal plan with him? Why can’t she continue to exercise? Why are parents in charge of food? Why are you drawing so many metabolic labs? Why can’t she eat sweets? And when? When will she understand that she is beautiful? When can we be done? When can I trust her to eat on her own? These, and many more, are perfectly valid questions which you will need to have answered for yourself several times over as you move through treatment. There are not enough hours in the day to answer them all as often as we would like, so we encourage you to do your homework. Folks: do your homework! Your child and your family are at stake. Read your Parent Handbook, cover to cover. Read the blogs. Send the blogs that you find relevant to your relatives, friends and coaches. Join the FEAST parent forum and talk with other parents. Read Give Food A Chance. Ask the grandparents to read it. You know, the way we all do research on the web when trying to understand the best car to buy, the right food processor, the right college. Surely this deserves the same level of attention and thought? Educating yourself will help you focus your important questions when you do see the doctor or nurse. It will -- you guessed it -- reduce the panic you feel.
When I first thought about writing this blog I had patients with anorexia nervosa in mind. Patients with AN often struggle to find their voice, regardless of how smart, competent and encouraged they may be by others. On the other hand, our patients of high body weight for whom metabolic problems have lead to obesity, can have the same problem: shame and self-loathing has made them reluctant to use their voice, to fight back.
Unfortunately, “finding their voice”, a commonly stated treatment objective, may not be enough, both groups of kids actually have to find their sass.
Why? Because for both diagnoses there is abundant negative feedback and shaming coming from the environment, to say nothing of the negative voices coming from within.
Kids with anorexia nervosa hear that they are “superficial” “attention seeking” “and just want to look like a model” and that they are “ruining their parents’ lives”.
Kids of high body weight are told they are “lazy” “gluttonous” and “obviously don’t care about their health”. They are shamed in every way imaginable and just about everywhere they go.
But not at Kartini Clinic.
We treat kids with all conditions of disordered eating, just as another clinic might treat all conditions of disordered metabolism (endocrinology) or all conditions of childhood cancers (oncology) with no effort made to segregate these kids from each other. They are all just kids, and have a remarkable ability to find resonance with and compassion for other kids who have eating issues, even when those issues appear to be very different than their own. We adults could learn from them.
But back to finding their sass:
It is not enough to recognize how people and institutions shame you for your condition, one you did not ask to have and did not choose and one your parents did not cause, either. It is also important to learn to fight back. “Finding your voice” may be a polite way to respond to misguided comments from others, but you will discover soon enough that people fight back when their cherished beliefs about body weight, eating disorders and mental health are challenged. Why, if they are to believe that it happened to you -- and that you didn’t choose it -- then it could happen to them too or to someone they love, and that is scary. In the great game of “46 card draw” (aka your genome), we all get genes for complex illnesses… or not. Virtue is rarely the determining factor.
So when an adult, say a teacher, promotes messages that imply that eating disorders are a result of poor parenting or a “choice to get too thin” or that severe high body weight is caused by “poor food choices” and being “too lazy to move around”, you are going to have to call them out. How polite you are about doing this depends on who is it and where you are. You may need to be downright sassy to be heard. You may need reinforcements (parents), but you should not go quietly! I write this blog to be useful, for example, not only to help Kartini families, but also to have something concrete to give to people who need educating or at least to hear a voice with a different, informed, point of view.
To fight back you will need not only your voice, but your sass. Find it!
[Ed. note: This week’s guest blog has been written by Mary Gunesch, a licensed Oregon teacher and administrator, who recently joined Kartini’s clinical team. Mary has been instrumental in securing official recognition of Kartini School by the Oregon Department of Education.]
What if we told you that your child—during his/her time at Kartini Clinic—will not only learn to eat in healthier ways but will also learn better ways to think about learning and school?
Most patients we see have high expectation of themselves, and they are very responsible students. While this seems desirable, and can help kids get good grades, it is worth looking at carefully. Sometimes what looks like being “responsible” could be more accurately defined as “dutiful.”
When kids complete assignments, when their work is legible and turned in on time, they often get positive feedback (e.g., high grades, gold stars). However, as kids get older, schoolwork gets harder. In advanced classes in high school, as well as college courses, the expectations go far beyond neatness and timeliness.
At Kartini School we have time with students one-on-one. We can help them decide if they are learning from an assignment (a worksheet, for example) or if they are simply doing it because it is expected. We can alleviate stress for kids by helping them focus on the activities that facilitate understanding.
Sometimes kids get bogged down by “all the work” they “have to do.” By reducing the volume, we can reduce stress. And when they feel less stressed, they get better sooner.
There is a difference between learning and doing. Learning is like remodeling; you have to get in there and see what you know and then you have to get rid of the old incorrect concepts and build the new ones.
You can test this out by thinking about the earth, the sun, and the moon. How do the rotations, the revolutions, and the tip of earth’s axis determine the seasons? You learned it in school. At least you did worksheets about it. But did you learn it? Can you explain it now?
While they are in the PHP, our kids won’t spend all day in school. They have other activities to help them get well. We’ll work with them during their time in Kartini School to enable them to learn the concepts their teachers are teaching. But they may not do all the activities their classes are doing. That’s okay! We’ll teach them to determine priorities in their schoolwork and help them learn to decide which activities are most helpful for them.
This is a good thing. When they go on in education, they will face increasingly greater challenges, and they will have to know how to manage what often feels like too little time to complete all their work.
Educator and author Susan Weinbrenner asserts the importance of students knowing how to handle this. She asks parents to think about when and where they want their kids to be when they struggle for the first time: “Surely not alone in a freshman dorm far from home.”
Over the past 20 years (yes 20!) of re-feeding children with eating disorders, we at Kartini Clinic have learned some tips and tricks, which I thought I would pass along. Whether you are re-feeding a child at home or in a clinical setting, I hope these pointers can be helpful to you.
Remember: even though life stops until you eat and that without weight restoration you will get nothing, there are ways to help make the process less painful and more supportive. At Kartini Clinic we operate in a “peaceful, friendly, no-negotiation atmosphere” and recommend you do the same.
Knowing that negotiation is not possible will actually make your child less anxious. If they think there is the possibility of negotiating even a teeny bit on behalf of the eating disorder, many kids will beat themselves up if they don’t try. Negotiation, or the possibility of it, will force them to try and bargain with you at every turn. They will be miserable and you will go crazy.
So when is compromise useful and fair?
Example: “Can I listen to hip hop music during lunch instead of classical music as a distraction?” Answer: Yes. Such a compromise, if it helps your child eat in a reasonable amount of time is cheap at twice the price.
Example: “Can I save half of my lunch sandwich and eat it at snack?” Answer: Emphatically no. Pushing food off until later is a common eating disordered behavior. “Later” either never comes or is miserable.
Example: “Can I skip my evening snack and eat it tomorrow? I promise, promise, promise I will.” Answer: Certainly not.
What are the tips and tricks, courtesy of experienced Kartini staff?
1. Set the table, let them put flowers on it; make the food environment less grim (Dr. O’Toole)
2. Always eat with them, and never less than they are eating. No one likes to be stared at while they eat and others do not. (Dr. O’Toole)
3. Help them identify the most difficult food on their plate and eat it first (Dr. O’Toole).
4. When bringing food to the table, always make their plate the last one you put down, then sit down and do not get up for any reason until they are done (Jade Buchanan, Clinical Director).
5. Either check napkins at meal’s end or eliminate them (Jade Buchanan).
6. No dogs roaming around the room. Too easy to “drop” food. (Dr. O’Toole)
7. Don’t eat in the car ( Dr. Moshtael)
8. Voice tones are important…. Keep calm and soft-talking as if this is not such a big scary deal to eat (Amy Stauffer, milieu manager)
9. Food rolled up in a tortilla looks smaller and easier to eat (Amy Stauffer)
10. Fun activities at the table could be toys set out that they put next to their place mat to feel supported... drawing paper instead of table cloth.... Personal supportive things set at their personalized place setting ... Telling stories is great distraction.... (Amy Stauffer)
11. Spinach as a vegetable cooks down into a tiny amount and makes the plate look less full (Dr. Moshtael)
12. Absolutely refrain from commenting (or allowing others to comment) on “how much food” it all is (Dr. O’Toole).
13. Sometimes we'll have the kids pace after us, taking bites at the same time so we role-model eating for them (Josh Barrett, milieu therapist).
14. Laughter and compassion go a long way. (Josh Barrett)
15. Give them sufficient time prompts that they can track their progress, but not so many that it stresses them out. Typically I give one every 10 minutes, half way through, 5 minutes left, 2 minutes left, 1 minute left. (Josh Barrett)
16. Have a mantra/positive affirmation they can repeat (e.g. "not finishing is not an option," "The meal plan is just right for me" (Josh Barrett).
17. Understand that what might have worked for a past patient, will not necessarily work for a new one. I have found that it is helpful to approach each child who is reluctant to eat with an open mind, not assuming that a template will work for them. (Ellie Franco, milieu manager)
18. Keep a consistent structure at meal times. (Ellie Franco)
19. No judging voice tones or pressuring demands. (Amy Stauffer)
20. Set reasonable meal-time limits and stick to them. If they cannot/ will not finish in a timely fashion, have them drink a Boost or an Ensure to make up the difference at the end of the expected time (30 minutes for breakfast and lunch, 15 minutes for snack, 45 minutes for dinner). Do not sit at the table for hours (entire team).
And now about some tips or tricks of your own, dear parents and colleagues?