Evidence Based Treatment - Kartini Clinic for Children and Families

See Something, Say Something

March 7, 2019 by Morgan O'Toole-Smith

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.

Why Animal Therapy?

May 25, 2017 by Julie O'Toole

8 AM: drop-off time at Kartini Clinic. It’s early, and patients and parents alike have a day of hard work ahead of them. But then… enter Ryla.

Family therapist Lisa Peacock says that one of her favorite moments of the day is seeing the mood in the waiting room transform when Ryla or Baxter, her two therapy dogs, run in to say good morning. That’s one of the simplest but most effective aspects of animal therapy: most people like animals, and having one around makes them happier.

It can also make the clinic feel a little bit more like home. Lots of patients have pets, so having an animal makes them feel more at ease. And this works both ways: as patients work with Ryla, Baxter, and other animals, Lisa helps them develop strategies for using their own pets for comfort and support, preparing them to practice self-care once they are discharged from the clinic. It’s just one answer to a broader question about the many forms recovery can take. What form does your comfort take? Where can you find it in your daily life? Animals are a good answer for many patients– to the point where we’ve had many patients leave the clinic expressing new interest in becoming a vet, or otherwise working with animals.

Especially for the youngest age groups, the animals are a useful centerpiece for developing important social skills, including helping manage impulse control problems, or learning to take turns and share. Older patients, on the other hand, who can feel frustrated by the requirements of treatment, appreciate the animals as a way to demonstrate responsibility. It’s common for teenage patients to worry that they are a burden on their families, they often feel that being in treatment puts them in a constant position of being a recipient of care. A therapy animal gives them another living being to whom they can give love and support – and who accepts their love without judgment. The work is not just about treating patients’ eating disorders, but equipping them with skills and tools to smoothly return to today-to-day life.

Of course, day-to-day life continues even when in treatment, and that’s something that animals help us remember, too. After a difficult appointment or therapy session, seeing Ryla rolling around on the floor can provide much-needed laughter, and a reminder that even in the hardest moments, life goes on… and that includes the good parts.

Finally, animals provide a source of distraction– in a good way. Treatment can be a difficult time for the entire family. But animals can be a source of positive memories and wonderful moments during this rocky journey, something to look back on and feel good about. It can also provide fodder for conversation, something exciting to share at the end of the day– mom, dad, I met a blue-tongued skink!

(The skink is Dan, by the way.)

At Kartini Clinic, we know that there is so much more to eating disorder recovery than just food. Animal therapy is just one of the ways we strive to offer a holistic treatment experience for all of our patients.

Processed Food the Foodie Way

April 13, 2017 by Julie O'Toole

Nearly every day I am anxiously asked whether or not our young patients can have rice “milk,” almond “milk,” soy “milk” or coconut “milk” instead of the whole milk that is on our menu. These inaptly named “milks” are about as related to milk as cheese whiz is to cheese, and although not harmful (and even delicious), should not be mistaken for the white beverage given to early mankind by dairy animals as a source of protein, fat, calcium and vitamins. They are perhaps more properly called soy, rice, almond or coconut “drinks.” What’s in a name? Well, ask the marketers. By labeling them “milk,” parents think they are giving their child a more healthful version of the drink-food that has sustained children the world over. It says it’s milk, right? It must be good for children.

Not all of us carry the genes to split milk sugar (lactose), however, and may need supplements of that enzyme (lactase) to do so. Milk protein allergies do exist, but are thankfully rare. Many populations have solved the lactose problem naturally by pre-fermenting milk before ingesting it, giving us the world of yogurts, kefirs, quarks and cheese, among others.

The New York Times recently ran an article comparing the various plant-based “milks” nutritionally. They are not one size fits all. They say: “…in terms of nutritional content, a recent study in the Journal of Pediatric Gastroenterology and Nutrition confirmed that plant-based beverages vary widely in their nutritional profiles, and the authors recommended that young children drink cow’s milk unless there is a medical reason they cannot.”

The Cliff notes are these: 8 oz of cow’s milk has 8 grams of protein and lots of calcium (in a form that is more easily digested than the calcium added to the plant-based drinks to level the playing field). Coconut milk, for example, has less than a gram of protein and only added calcium. And then some nut or legume-based beverages have been fortified with Xanthan gums and other thickeners to give them a mouth-feel similar to cow’s milk and make them seem less thin and watery. I urge you to read the New York Times summary article or, better still, the study in the Journal of Pediatric Gastroenterology and Nutrition and judge for yourself. We already know pediatric patients do not need to be afraid of the fat.

Oh and by the way, my current favorite myth-challenging article is one looking at the nearly ubiquitous belief that milk causes mucus or phlegm. My mother insisted it did, her mother insisted it did. Well, milk drinkers and dairy product lovers everywhere, I guess we can rest easy.

Five Things Every Parent Should Know About Childhood Eating Disorders

February 28, 2017 by Julie O'Toole

1) Weight loss in children isn’t normal

Imagine you’re a parent of a bright, active 12 year old boy. He gets good grades and has lots of friends. He excels at sports. Then something changes; he begins to lose weight. At his last checkup his pediatrician registers a heart rate in the low 50s. He starts to withdraw, not doing many things he used to enjoy, with the exception of exercise. He now exercises with a new intensity.

His doctor tells you not to worry. “It’s just a stage”, she says. “Don’t make a big deal out if it, or you might make it worse. He has weight loss and a low heart rate because he’s an athlete.” But you have the nagging feeling that something’s wrong. What do you do?

For nearly two decades Kartini Clinic’s internationally recognized team of pediatricians and therapists has diagnosed and treated more than 3000 children from across the country and all walks of life. And we have seen presentations like the one described above hundreds of times.

Our message is always the same: weight loss in children is not normal and should be investigated immediately.

And weight loss shouldn’t be the only concern. Because children are still growing they need to gain weight. An interruption in their past rates of growth and development is a sign of potential trouble ahead. Your child’s growth chart is a critical diagnostic tool that can provide early warnings. Always review your child’s growth chart with their doctor and remember that averages don’t apply to individuals. What matters most for your child’s health should be based on their unique biology.

2) Children are not small adults

In the example above, with a daytime heart rate in the low 50s, this child’s overnight heart rate could be in the 40s. This is dangerous territory for a child. The American Academy of Pediatrics’ hospitalization guidelines recommend admission with a nighttime heart rate below 45, regardless of athleticism. Don’t be fooled into thinking that because Usain Bolt has a resting heart rate in the 40s, it’s OK for your child to do so.

Childhood is an essential period of growth and development, a time when critical biological systems form. Weight loss – or simply a failure to grow and develop normally – could signal a dangerous disruption to these processes.

3) Parents don’t cause eating disorders (and children don’t choose to have them)

This is our motto, and something we make clear to all families from day one. The scientific evidence is unambiguous. Parents don’t cause a child’s eating disorder, any more than they cause Type 1 diabetes or autism. These are both understood to be genetically inherited illnesses. So are eating disorders.

4) Eating disorders are brain disorders and run in families

How do we know this? Decades of research using twins separated at birth has firmly established the heritability of anorexia nervosa (the most thoroughly studied eating disorder) between 50% and 70%. By comparison, heritability of height is about 90%. This means your height is 90% dependent on your parents’ height. The other 10% comes from environment. Equally, anorexia’s high heritability rate implies that it’s largely a biological brain disease, passed from parent to child, but with a significant environmental component. But like many complex illnesses, we don’t yet know enough about what environmental “triggers” lead some who are genetically vulnerable to become ill.

5) If you think something’s wrong, get help

We always tell parents, ‘you are the experts in your child.’ If you think something’s wrong, don’t let your concerns be ignored, even by your pediatrician. Our colleagues in primary care are in a tough position; they don’t want to overreact. Furthermore, eating disorders are thankfully quite rare. However, most doctors don’t have training in diagnosing or treating them. But they do happen, especially to genetically predisposed children. It’s therefore critical to understand the specific risk to your child. A pediatric specialist’s evaluation is the best way to rule out an eating disorder.

Why We Limit Hyper-Palatable Foods for One Year

September 22, 2016 by Julie O'Toole

When I was first introduced to the Minnesota Semi-Starvation Study (MSSS), published in 1950 by Ancel Keys and his team, I was overwhelmed by the sheer volume of data they were able to accumulate about the physical and psychological ramifications of semi-starvation in humans.

It was mind-blowing. Then I came across the graph on page 106 of the hardbound edition called “Over-all Changes in Body Weight in the Minnesota Experiment” with the subtitle: “Expressed as a percentage of the control value for the particular group of subjects”. I invite you to Google it.

The Y axis (the vertical one) of this remarkable graph showed “% of control weight achieved” (100% at the start of the study, before the subjects were dieted). On the X axis (the horizontal one) was the “number of weeks of the experiment,” which stretched out to 58, or one year and 1.5 months.

Over the course of the study, the subjects were fed a calorie-reduced diet designed to mimic war-time semi-starvation rations; the subjects’ body weights could be seen to drop to about 77% of “normal” by about week 24. So they were dieted for 24 weeks.

Thereafter came 12 weeks of “structured re-feeding,” which is what we do at Kartini Clinic — a process designed to give a healthy mixture of nutrients, but in a controlled fashion. Around the 12th week of re-feeding the subjects were allowed to eat “ad-lib” (or “intuitively” in the parlance of our day), with no content restrictions. This style of eating caused a very steep rise in the subjects’ rate of weight gain and resulted in them gaining 110% of their control weight. In other words, their weight went up higher than it had ever been before the diet.

The University of Minnesota published a video about this experiment 15 or so years ago. In it, they interviewed one of the “survivors” of this study, now an older man. He said that once they were allowed to eat what they wanted, they ate everything, often indulging in the sweets and desserts they had denied themselves during the period of semi-starvation. “We got fat” he said, and seemed to find it amusing. Following the above-referenced curve out to the 58th week of the study, though, you can see that the overeating appears to have subsided and the subjects’ weight to curve back down towards their normal weight — although they never really reached as low a weight as they had before they started dieting.

Taking a structured approach to refeeding at Kartini Clinic

OK, it may have amused some of the young men to “get fat,” but I reasoned that our patients (and their families) would not find this amusing at all. At Kartini Clinic, we are searching for the state of health that allows children to grow and thrive. And, in an effort to keep the growing body from “over-shooting the mark” with re-feeding and unnecessarily promoting binge eating (which appears to be common following semi-starvation and weight loss even in people who have never binged before), we decided to remove “hyper-palatable” foods for about a year encompassing weight restoration. Hyper-palatable foods are those with high sugar and fat content — neuroscientists’ definition, not ours.

If you look at Key’s graph, waiting a year to re-introduce these foods should take us out of the area of binge eating into more normally driven food intake. Simple, right?

I think that nothing that we have innovated at Kartini Clinic has caused us to be so roundly criticized as this suggestion that our patients avoid sweets during the initial phase of re-feeding. We immediately ran afoul of the “intuitive eating” proponents although, to date, no one has explained the medicine/science behind their objections. Ancel Keys’ research subjects did not have eating disorders and 12 weeks of ordered refeeding did not cause them to “fear foods” or to develop an eating disorder. Eventually, they went back to normal eating…a year plus later. That is our plan as well.

Once binge eating behavior starts, it’s hard to stop

In addition to studies about the bingeing and food seeking behavior that can follow dieting or restricting, there is also a plethora of animal studies specifically looking at bingeing and hyper-palatable foods. Bingeing in mammals is a product of gene-environment interactions. The “gene” part is how vulnerable to binge eating your brain is because of your genotype, the “environment” part is the food you are exposed to.

You cannot tell whether someone is binge-prone just by looking at them. From rat studies, we know that this tendency sometimes does not surface until puberty or later. In binge-prone rats “intake of just a morsel of PF [palatable foods] or simply the smell of PF is known to trigger relapses back to binge eating.”[1]

For those of you who like reading the science, Chapter 8 of the same text, by Michopoulos, Moore and Wilson, discusses the biology of diet choice and emotional feeding in times of stress, which will vary from one being to another. While brain chemistry causes these behaviors, they can appear to be lifestyle “choices” for which a patient is blamed.

Other authors (Ventura, Latagliata et al) note in their chapter on “Food Seeking In Spite of Harmful Consequences”: “…repeated stimulation of reward pathways through highly palatable food consumption may lead to neural adaptations that make consumption more compulsive.”

I ask you, why go there? In anorexia nervosa, simply refraining from adding hyper-palatable foods to our patients’ meal plans would seem to offer the possibility of a smooth return to normal eating. As we say: First do no harm, then innovate.

And as I say: Disagree? Show me the science.

[1] Animal Models of eating Disorders; Avena, N (Ed.); Humana Press 2013 ISBN 978-1-62703-103-5) page 8.

See Something, Say Something

Why Animal Therapy?

Processed Food the Foodie Way

Five Things Every Parent Should Know About Childhood Eating Disorders

Why We Limit Hyper-Palatable Foods for One Year

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