Morgan O'Toole-Smith - Kartini Clinic for Children and Families

How to Weigh an Eating Disordered Child or Teen

July 6, 2017 by Morgan O'Toole-Smith

This is an update to a post originally shared on November 30, 2010.

When we discharge a patient from Kartini Clinic back to their primary care provider, it is usually with the instructions for weekly blind weights for about a month, then, if stable, every two weeks, then monthly for about half a year. But I am frequently asked by those primary care providers, “How do you weigh an eating disordered child?”

So here is my advice for weighing an eating disordered child for any providers who ask:

Remember that weights are a source of extreme anxiety for children/youth with eating disorders and, to the extent that weight gain/stabilization is seen by families as the only “real” benchmark of progress, pressure on the patient to falsify it in order to please others will be strong. Nonetheless, weight restoration is critical, critical, critical in recovery —even though it’s not everything.

Any patient who has web access will be aware of multiple ways to falsify their weight; you need to safeguard them against this overwhelming temptation by weighing them in a predictable, unvarying way (see below).

I would encourage you not to share a patient’s weight with them, but rather to carry their anxiety about weight numbers for them (with their parents, of course). Don’t make a big state secret out of it, just say something general like, “You’re doing a good job, we’re pretty stable,” or “We’re headed in the safe direction.”

Taking a weight is just like taking any other vital sign, which is what it is. Do it professionally, privately and kindly.

Always weigh the patient on the same scale. If you have multiple scales in your office, mark one discreetly (fingernail polish works, just a dot).
Always weigh them in a gown with no underwear and with their back to the scale.
Please do not weigh them in the hall.
Educate your nurse or medical assistant to say nothing while taking a weight or afterward, and to write it down away from the patient; do not leave the chart in the room.
Weigh the patient after a void. Check the specific gravity of the urine in order to assess for any degree of water-loading; if the urine specific gravity is 1.005 or less, ask them to void again before weighing them. If it remains that dilute, abort the weighing and have a talk with them and their parents about over-drinking prior to a weight being taken. Let the parents help them prevent this.
We have seen weights worn everywhere, even taped to the body. Be alert but non-judgmental about this possibility.
If you have concerns about your patient wearing weights, ask them not to bring any bags, purses, etc into the exam room while they change into a gown. Once they leave, discreetly check the wastebasket for discarded heavy items.
Teach your staff that you are not doing these things to “bust” your patients but to safeguard them.

So: weigh them in a room on the same scale each time, in a gown, after a void, with their back to the scale, and never allow your staff to comment on or reveal the results.

The Biological Similarities Between Anorexia and Obesity

April 16, 2015 by Morgan O'Toole-Smith

One thing I believe to have learned over the years is that those readers who are interested in anorexia nervosa seem to have little interest in obesity, which they regard as an lifestyle choice irrelevant to them, while those who study obesity often ask themselves what this rare condition (AN) has to do with their vastly more prevalent (read: important) condition of obesity (OB)? Well, as it turns out, quite a lot.

And by the way, it’s worth repeating at the outset, neither condition is one of choice. Who would choose them?

So let’s start with the simplest similarities between these two groups: those with anorexia nervosa and those with obesity. Both AN and OB are complex neurobiological disorders with widespread metabolic consequences.

Both have strong genetic and epigenetic underpinnings. People with both conditions can be exposed to and influenced by obesogens in the environment. Thus, a patient who is starved and thin during the years of their AN can develop the same higher body weight issues later in life, when exposed to obesogens.

And as we’ve learned from collaboration with Dr. Emily Cooper of the Diabesity Research Foundation, these similarities also relate to the metabolic consequences of dieting or restricting calories. It turns out that OB patients almost always have a history of self-imposed – and invariably encouraged! – diets or have engaged in periods of fruitless and harmful restricting (fruitless since the weight almost always comes back, plus some).

Patients with AN by definition engage in restricting (with or without purging). And it turns out that the response of the brain to dietary suppression is remarkably similar in both groups. And this really should surprise no one.

The brain hates low food intake. And it will exact its “revenge” for it. Even hours of restricting or dieting can result in a drop in leptin – a protein that, among other things, acts as a signal to the brain that the food supply is endangered – which in turn can cause a decrease in the base metabolic rate in order to conserve energy. To do this the brain turns down our “oven”, the thyroid gland, and slows the caloric burn rate. It also puts the brakes on reproduction, affecting both female and male hormones. It cranks up hormones designed to increase appetite such as ghrelin, which, according to Dr Cooper, has further central nervous system and peripheral inhibitory impacts on thyroid and reproductive function.

Dieting serves to increase ghrelin, which increases insulin and decreases postprandial glucose, a condition known as postprandial hypoglycemia (PPHG), something we often see in our patients with AN. And at Kartini Clinic we know this because we do extensive metabolic testing (part of Weight Restoration 2.0).

Our lab testing has shown that a remarkable number of young patients who are otherwise recovering nicely from AN have PPHG, which in turn suppresses leptin despite adequate weight restoration, and inhibits resumption of menstruation (in females AN patients). This in turn has serious implications for bone health and cognitive (brain) function.

But wait, the news about dieting gets worse! Ghrelin is elevated in dieting and can stay elevated a long time after resumption of eating — according to the Diabesity Research Foundation, 62 months or more. So recovering from dieting/restricting is remarkably similar whether your starting point was fat, thin or average. And both groups also suffer from terrible social stigmatization, though ironically, in my experience, the two groups often seem to have remarkably little sympathy for each other.

As I mentioned, another shared vulnerability is environmental obesogens. Obesogens are chemicals in our environment that trigger metabolic derangements whose end point is to raise body weight. These changes can be immediate and/or epigenetic, which may even make them heritable (a sobering thought).

Most of you will have heard of bisphenol-A, a plastic additive that has been put in products from baby bottles to cash register receipts, food containers, the lining of cans of food, etc. and which apparently can be absorbed through skin contact. Consumer pressure to limit the use of these additives has caused several companies (e.g.Tupperware, Kirkland/Costco) to remove them. Recently, however, there has been some controversy about whether the chemicals replacing them actually may be as bad.

Arsenic is cited as another obesogen. And while arsenic sounds like something you would not want to ingest, it’s where we are exposed to it that’s interesting — and terrifying. In an article in Consumer Reports, entitled Will a gluten-free diet really make you healthier? we learn that an unexpected effect of not eating wheat is the increased consumption of rice, which increases our exposure to arsenic. It turns out that a “local” (California) rice is among the lowest in arsenic. Good to know!

Another obesogen is nicotine, and I mention it because of its paradoxical influence on body weight: children exposed to smoking and nicotine in utero are frequently born small for gestational age, and it isn't until they are adults that the effects of intra-uterine nicotine exposure are seen in increased rates of obesity and metabolic syndrome.

There are several smartphone apps designed to help us monitor these additives, much like those for monitoring pesticides in food (e.g. “the Dirty Dozen”), though they are not all equally user-friendly. I typed in a few of my stand-by cosmetics into an app called “Think Dirty”. I first typed Chanel #5 perfume (presumably French) and found that it has a rating of 9 out of 10 (10 is the worst)! So how about my Clarins face cream? A 10; Neutrogena sunblock lotion? 8. And further random cosmetic counter options: La Mer’s Cream de la Mer? 9; Bobbi Brown rouge? 9; L’Oreal lipstick “tickled pink”? 10; Perricone MD face moisturizer (developed by a well known physician no less)? 9; his “concealer concealer”? 10. Of the Shampoos chosen at random: Organic Root Stimulator shampoo was a 10; Vidal Sasson Pro was a 9; Head and Shoulders Shampoo was a 10. Take a look for yourselves. It’s pretty concerning.

The message is: whether you have AN or suffer from OB, you are equally exposed and no matter your starting weight, the end point can be obesity and metabolic disorders. Oh, and by the way, no amount of dieting will prevent the increase in body size (to say nothing of endocrine disruption) caused by environmental obesogens– in fact, via the leptin changes outlined above, dieting will actually make it worse.

Are obesogens the sole concerns of extreme organic farmers, health food nuts and “orthorexic” individuals? Definitely not. My own study of weight homeostasis in humans has prompted me to re-think many things. It’s time we move beyond simple weight restoration in AN to Weight Restoration 2.0 and waaay beyond dieting and exercise as a treatment for OB.

Real health is what we should be after. We need to get informed; as providers and consumers we need to attempt to stay up with the science. We need to go where the science takes us despite the inconvenience and discomfort such a re-think may prompt. We are all on this journey together.

Genetics of Brain Disorders

September 18, 2014 by Morgan O'Toole-Smith

Medicine is moving at the speed of light. And that’s a good thing. We have a long road ahead of us to move out of the pre-scientific eras, where no one required an evidence base to do most anything. And we face an even longer road to shed the paternalistic roots of “doctor knows best” (not to mention parent blaming for brain disorders!). But perhaps the longest road of all is the road that is now leading us to real “individualized” or “personalized” medicine.

Actually, I prefer the term “personalized medicine” because it says the same thing as “individualized medicine”, without forgetting that we are persons. And as persons, we are psyche and soma: spirit and flesh, so to speak, even where “spirit” may be closer to “neural connections” than to “ghost”. We have thoughts and feelings which, even if all thoughts have a neural basis in our physical brain, are as important—or more important—than our hemoglobin, our cholesterol profile or our IQ.

Genetic testing—the scientific core of personalized medicine—offers us the hope of tailoring medical recommendations to our own biology. Am I someone who should avoid salt? Am I someone who will have cardiac complications with non-steroidal anti-inflammatory medication? Can I/should I take Prozac? Do I need a yearly mammogram?

I am blogging about genetic testing again as I think this is going to evolve rapidly from something used in only a few forward leaning practices to something being used in everyone’s practice, and sooner than you think. And, really, how could it not? I am certainly not going to allow myself to be prescribed any medication for which there is known, evidence-based, testing regarding efficacy and safety for people who carry the gene mix I do. I want testing based on my genetic make-up, not pooled evidence from 10,000 of my closest middle-aged +, Caucasian, female, cohort-mates.

I think, however, as we examine which variations each of us carries in regards to the metabolism of psychotropic (brain-affecting) medications, we may learn more than we bargained for.

For example, I come from an Irish American family. Alcoholism runs notoriously in families of Irish descent, just as it seems to run in Native American families. I have spent lots of time thinking about this issue (familial alcoholism) as it affects many of those whom I love, actually or just potentially. As a young person I observed that my father’s generation on his own father’s side (the Irish side) were about half severely affected and the rest moderately to mildly affected. There appears to have been a “wash-out” effect in subsequent generations as “outbreeding” diluted the original gene pool, even though there are still affected family members: about ¼ severely, ¼ not at all and ½ mildly. It was clear to me as a child that “who received the alcoholism gene(s)” was not dependent on “who was a good person”. Even though, notoriously, alcohol abuse will ultimately destroy a person’s relationships, ability to work, brain functioning and health, the people who are affected are still wonderful people. My favorite uncle was so affected. And although his wife stood by him in his illness and he eventually became sober, it was far too late to prevent the tale of woe that had dominated the lives of my cousins.

I guess what I am trying to say is that I suspect we will find out – have reinforced – the fact that alcoholism and drug abuse are brain disorders and disorders of metabolic processing of substances, not the character flaws they appear to be.

When I looked at the results of a young man whose heritage was half Lakota/Sioux and whose parents’ lives (both of them) had been destroyed by opiate and meth abuse in one and alcohol abuse in the other, and I listened to the young man himself tell me how he had struggled to come off of every psychotropic medication he had ever been prescribed, and experienced little help from them and then I saw the results of his gene testing which predicted this very thing; I was awestruck.

We are standing on the verge of something very big, folks. And in many ways, it’s high time.

The Long Silence

August 19, 2011 by Morgan O'Toole-Smith

Occasionally we invite guest bloggers to write about their experiences in the field. Steve Nemirow has been, among many things, a intake co-ordinator at Kartini Clinic for many years, and has talked to hundreds of families about their struggles to find proper eating disorder treatment for their children. This is one of those conversations.

Life on the Fracture

Recently I was on the phone with a young father from a southwestern state, whose 8 y. o. son was refusing to eat any solid foods, after he choked on vomit during a bout of ”flu.” This conversation presents a problem I can’t fix. This happens in the world of childhood eating disorders, more often than anyone wants to talk about. I imagine the problem could be fixed, but that will only happen once a voting majority decides that childhood illnesses belong to all of us, and where children are involved, health problems are never “somebody else’s responsibility.”

The father had taken his son to a major medical center where a standard battery of medical tests all came up negative. Still, the boy wouldn’t, couldn’t eat. He was losing weight. He wanted to eat. They took him to an ear/nose/throat specialist. They took him to a speech pathologist. A swallowing specialist. The boy couldn’t eat. He kept losing weight, despite his parents’ best efforts to keep his weight up using Boost and smoothies and milkshakes. He dropped from 63 lbs to 52 lbs. Then his father found our website on the internet.

After speaking at length with the father about the onset of symptoms, I offered him my non-expert opinion (preceded by the usual caveats that (1) I am not a medical doctor, (2) this is not a diagnosis but only a conversation, and (3) to get a real diagnosis it will be necessary for one of our doctors to examine the patient, take some time doing so, and meet with his parents): I said, it sounds like your son may have food phobia.

“That’s what I think.” Said the father. “I knew it as soon as I read your website. It was like you already knew my boy, knew what happened to him.”

“If that’s what he has, I believe we can help.”

“I’m glad to hear it, you’re the first place I’ve talked to that says they think they can help.”

The question, I said, is going to be resources. There was quiet on the line.
“Health insurance,” I said.

“I got laid off in January.”

“Any COBRA coverage?”

“COBRA shit its 1,300 a month. That’s more than my unemployment. What’s so expensive?”

“It’s the hospital. Its about $3,500 a day. Plan on a couple weeks’ stay. It could be shorter or longer, but a couple weeks is a good planning number.”

The long silence.

“You know how the President says our health system’s broken?” I asked him.
More silence.

“You’re right on the fracture.”

After more silence he said softly, “That’s like 49,000 dollars. And then there’s the airplane tickets. You tell me how I’m supposed to do that.” I could hear his breathing.

“You tell me why a boy’s not going to be treated because his father’s been laid off and can’t find work,” he said. “My boy didn’t do anything wrong.”

5 Things to Look for in an Eating Disorder Program

July 16, 2011 by Morgan O'Toole-Smith

As Dr. O’Toole is away this week, I thought I would try to fill her rather roomy shoes and take a stab at this week’s blog. As CEO I’m often asked by parents and providers: what makes a good eating disorder treatment program? What specific criteria should one use to compare programs? What questions should one be asking?

And you won’t be asking these questions only of prospective treatment programs. These will come in handy talking to your insurance company, when they make the inevitable “in-network” treatment recommendation.

Firstly it’s important to remember that insurance companies make treatment recommendations based on commercial relationships with providers (i.e. network contracts). These have zilch to do with appropriate treatment for your child. That’s not to say they couldn’t make an appropriate recommendation. They might; then again they might not, and it falls to you, as parents, to make the right choice based on what really matters: the health and welfare of your child.

And contrary to popular belief, you don’t actually have to take their treatment recommendation(s). You have options.

Secondly, insurance companies are always at pains to stress they never make medical decisions. Oh no, that’s strictly between you and your doctor. Well fine, in that case you and your doctor will determine if their treatment recommendations are appropriate. If you (parents) think they aren’t – and even if your doctor doesn’t agree with you – be prepared to fight. You should know that insurance companies are legally obligated to furnish “appropriate” treatment options within 50 miles of your home or pay in-network reimbursement rates (i.e. higher rates) for you to see an appropriate specialist, even if that specialist is not contracted with your insurer and/or is located far away (i.e. out of state). This is called an out of network exception, four words you are unlikely ever to hear uttered by an insurance company representative.

So then, what does an appropriate treatment program look like? Since Kartini Clinic is a pediatric eating disorder program specializing in children and young adults, particularly those under 12, we have strong opinions about the proper qualities of a program for this age group. The following are five questions to ask.

(1) Is the program truly a program for children or merely an adult program that treats kids?

This might sound obvious but too often I hear insurance companies insisting that an adult program should be able to treat a 15 year old (never mind a 12 year old). Nonsense. Children and young adults need a program tailored specifically to their needs, and not just one where the “adolescent treatment group” is staffed by providers who are really trained to treat adults.

(2) Does the program bill itself as a “dual diagnosis” program?

There are a lot of programs out there that say they treat children with eating disorders, but in fact they will treat anyone who will will pay their fees. Sorry, but it’s true. We are very skeptical of places that purport to be “experts” in such disparate and unrelated fields as eating disorders, substance abuse, behavioral issues, and developmental disorders. And all this with a single treatment team?! Chances are very good your child will be in the same treatment group as children who have wildly different diagnoses and treatment needs. That’s not appropriate care, in our professional opinion.

(3) Does the treatment team include a medical doctor with expertise in eating disorders?

In our opinion, any treatment team must contain at least one board certified pediatrician and/or pediatric psychiatrist, as well as therapists with specific training in the treatment of eating disorders in children. Don’t be shy about asking for this up front, and don’t be put off with platitudes and excuses. Remember: board certified pediatricians or pediatric psychiatrists. Period. And if these medical doctors don’t supervise your child’s condition daily, move on. There are programs who do, and they’re almost certainly going to be better for your child.

(4) Is there continuity of care?

Eating disorder treatment is complicated. It necessarily involves both expert medical and mental health providers. A good eating disorder program will have the same team of providers working together at all stages of care, whether inpatient, day treatment or outpatient. In other words you don’t want a different doctor or therapist for your child at each stage of treatment. And you don’t want a program that does one phase but not the next, i.e. provides inpatient but not day treatment, or day treatment but not outpatient. This just ensures you’ll have to start all over again with yet another group of providers who don’t know you or your child (or worse, give conflicting advice). Insist on a program that will see your child’s care through from the very first appointment to the last.

(5) Does the program place families at the core of the treatment team?

We are very heartened to hear how everyone now does “family-based treatment”. We’ve been doing it since 1998. And though all the brochures are certain to mention it, the fact is there’s family-based treatment and then there’s family-based treatment. Once a week conference calls with a family member is not family based treatment, in our opinion. True family-based treatment begins by placing the family at the core of the treatment team, not relegating them to the periphery. That means face-to-face family therapy at least weekly with all parents, if possible. It also means parent instruction and training on things like preparing appropriate meals for their child. After all, every child must eventually return home, to be cared for by parents who will need an in-depth understanding of proper treatment for their child. Without this there is little hope of lasting remission. And family-based therapy is not just nice to have, it’s been shown to be more effective in treating children and young adults with eating disorders than anything else out there. Be sure to insist on a program that doesn’t just pay lip service to family-based treatment but really practices it too.

I hope parents find this information helpful when discussing eating disorder treatment options with their insurance company or when looking into programs in their area. Just remember, you may have to insist on the right program for your child. But in order to do that you’ll first have to know what the right program should look like.

How to Weigh an Eating Disordered Child or Teen

The Biological Similarities Between Anorexia and Obesity

Genetics of Brain Disorders

The Long Silence

5 Things to Look for in an Eating Disorder Program

The Kartini Clinic Difference

Eating Disorder Quick Links

Resource Quick Links

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