Kartini Clinic for Children and Families

Pediatric Eating Disorder Treatment Program

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Dr. O’Toole to retire at the end of 2020.

December 16, 2020 by Morgan O'Toole-Smith

It is with decidedly mixed emotions that we announce our founder and chief medical officer, Julie O’Toole MD, MPH, will retire at the end of this year.

First I’d like to mention that (for once!) this has nothing to do with the pandemic. Dr. O’Toole’s retirement has been planned for some time; more than anything an exact date has always been dependent on our ability to prepare our clinical team for this momentous transition. And we are ready!

Second I’d like to stress how much things will remain the same. Replacing Dr. O’Toole at the helm will be our current medical director, Naghmeh Moshtael MD, assisted by our excellent team of medical and behavioral health providers, many of whom have been with us for the better part of two decades. We remain the most experienced pediatric eating disorder treatment team in the country (if not the planet), bar none.

Lastly I want to thank all of our families over the years – and for all the years to come – for entrusting us with the care of your children. Dr. O’Toole taught us that it is an honor and a privilege to do so, and we pledge to continue the pioneering work she began back in 1998. The mission continues.

Happy Holidays and a health and prosperous New Year to you and your family.

Thank you.

Morgan O’Toole, CEO, Kartini Clinic

Filed Under: Uncategorized

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.

Filed Under: Eating Disorder Research, Eating Disorder Treatment, Evidence Based Treatment, Family-based Treatment

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.

Filed Under: Anorexia Nervosa, Bulimia Nervosa, Eating Disorder Treatment, Eating Disorders

How to Recognize Eating Disorders in Boys

August 3, 2017 by Morgan O'Toole-Smith

This video shows an 11 year old boy who has struggled with classic anorexia nervosa, including fear of fat, self-denial, increased and compulsive exercise,weight loss and intrusive thoughts of worthlessness and shaming. He is also an excellent student, excels at sports and is personally very tidy. He comes from an intact, highly functional and supportive family and there is a family history of OCD and perfectionism. He is able to talk about “voices” telling him not to eat and what to drink. There are no symptoms of psychosis or delusions except for the delusional belief that he is fat. It is our hope that awareness of what anorexia nervosa can look like in young boys will help providers recognize the illness early and seek specialized help.

Filed Under: Uncategorized

To The Bone: What You Should Know

July 20, 2017 by Morgan O'Toole-Smith

 

On Friday, Netflix released “To the Bone,” a film about a young woman struggling with anorexia nervosa. The film has received a great deal of publicity, raising some questions and concerns among parents of children and adolescents with eating disorders.

Here are five questions you may have about the film.

 

My child is recovering from an eating disorder; should they watch this movie?

The question we would ask is why? If it is to gain “insight” into a complex brain illness in the hope that it will aid in recovery, the answer is no.

While this movie is at times emotionally touching and quite funny, in our opinion it doesn’t really represent well the current scientific understanding of anorexia or its evidence-based treatment practices, especially for children. It is a dramatic film much like any other: about imperfect people trying to navigate the challenges in life we all face. It simplifies and conflates many complex biological issues; it is at best a very personal journey through illness and not directly applicable to anyone but the author/director’s own biology and personal circumstances.

One of the most important things to bear in mind – at least for parents of minor children – is that this film is not about children at all (despite the emotional immaturity of several of the characters, including adults!). The scenes depicting treatment especially are very much from the perspective of adult treatment providers. While we would be the first to say we are not experts in adult eating disorder treatment, we can say with full confidence that this film does not depict the type of treatment that has been demonstrated to work best for children. And it is emphatically not the kind of treatment that we render at Kartini Clinic.

We might venture to say however that it could be an interesting movie for parents and therapists to watch and discuss together (without the child), as it does touch on important and quite common issues of family dynamics, and not just between parent and child, but between biological parents and step-parents, siblings, etc. In this sense it could provide some insight – or at least an opportunity for empathy – to those not directly suffering from this particular illness but whose lives are profoundly affected nonetheless.

 

How do I know if my child is ready to watch this movie?

Again, we would ask the question, what do you as a parent hope to gain from having your child watch this? As the basis of effective treatment we would say this movie is not what any child in recovery – or attempting to achieve recovery – needs to see. But we would also not want to discourage parents or other family members from watching and discussing its themes amongst themselves and/or with a family therapist.

 


My child's friends and schoolmates have all watched this movie and are now talking about eating disorders more than ever before. How do I help my child handle the hype?

By reminding them that they are not defined by their illness and that this is not real life; it’s a movie. It is no more applicable to them and their own treatment needs than the latest installment of Guardians of the Galaxy.

 

How do I know if my child is relapsing? How should I react?

If you suspect your child has been affected by this movie, either directly or indirectly, contact your family therapist or current provider immediately. If currently in treatment, be sure to raise it at your next appointment. For signs and symptoms of relapse, please refer to this blog post by Dr. O’Toole.

 

This movie about eating disorders is getting a lot of attention in the media. Could this cause more kids to develop eating disorders?

Absolutely not. Dramatic depictions cannot “cause” a biological illness such as anorexia nervosa anymore than pictures of cheeseburgers can cause diabetes. It’s just not possible. Could it be triggering to someone with a biological predisposition to the illness or someone in treatment/recovery? Perhaps, and so exposure for those in treatment or recovery is probably best avoided altogether. Better to watch The Lego Batman Movie.

But in all seriousness, we are all exposed daily to these sorts of themes and yet (thankfully) anorexia remains a rare illness. If the media could cause an eating disorder you would expect many more cases of illness than are currently diagnosed, even as we get much better at spotting and treating this dangerous brain disorder in children. Biology causes anorexia nervosa, not motion pictures.   


 

Filed Under: Anorexia Nervosa, Eating Disorder Treatment, General

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How to Recognize Eating Disorders in Boys

https://www.youtube.com/watch?v=PVgVmDIXqHc

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