Kartini Clinic for Children and Families

Pediatric Eating Disorder Treatment Program

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Are social media platforms making eating disorders in children worse?

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At least one school district in Seattle thinks so. Seattle Public Schools (SPS) has filed a suit in US DIstrict Court alleging that “defendants [social media platforms such as Facebook, TikTok, Instagram, YouTube, and Snapchat] affirmatively recommend and promote harmful content to youth, such as pro-anorexia and eating disorder content.” Essentially it appears SPS is saying such content exacerbates eating disorder symptoms and undermines effective treatment.

Not surprisingly perhaps, the issue is complicated. First some medical facts: eating disorders are biological brain disorders that are highly heritable (estimates – based on twin studies and genome-wide analyses – are as high as 74%; as a reference, that heritability is similar to the heritability of height in humans is estimated around 80%). This means eating disorders run in families and are emphatically NOT lifestyle “choices”, volitional behaviors on the part of patients, the result of bad parenting or the effects of images on social media. Such theories and explanations were once common but have in recent years been completely debunked by rigorous scientific studies (see above).   

At Kartini Clinic we like to put it this way: parents don’t cause eating disorders and children don’t choose to have them. Period.

So what about the role of social media? 

Consider the following analogy: can a child develop type 2 diabetes (T2DM) from looking at pictures of cheeseburgers? I think most of us would agree this sounds implausible and not very scientific. That’s probably because we understand and acknowledge T2DM to be a biological condition caused by complex interactions of genetics and environment. Eating disorders such as anorexia are no different.

This is not to say social media messaging can’t do any harm, for example by triggering behaviors or making children feel worse about themselves, which in turn could undermine effective treatment. After all, SPS is not alleging that social media platforms cause eating disorders but rather that they are contributing meaningfully (and, crucially, knowingly) to the disease burden on children suffering from these potentially devastating and deadly illnesses. 

At Kartini Clinic we certainly do share these concerns, and we would wholeheartedly support efforts such as additional mental health professionals in schools, lesson plans and additional training for teachers  provided they are grounded in a scientific understanding of these illnesses. Ultimately the key is to ensure that eating disorders are diagnosed promptly and treated effectively using evidence-based practices (i.e. grounding diagnosis and treatment in physical medicine and using behavioral health interventions such as family-centered treatment: families are almost always part of the solution to treatment in children, not part of the problem). Could the social media companies do better? Certainly. Perhaps they could “pair” content of concern with objective information about the causes, symptoms and potential for effective, life saving treatment of eating disorders in children. Although they aren’t directly responsible for these terrible illnesses, social media platforms could be powerful allies in helping us address this problem more effectively.

New to Treatment? Don’t Panic!

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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.

Online Reviews

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This post is from Kartini Clinic CEO Morgan O’Toole. 

Online reviews have become part of our everyday lives. Who hasn’t glanced at the star ratings when Googling a new hair salon or looking for a restaurant to try out? Most of the time, online reviews are just another useful data point when trying to make a casual purchasing decision.

But more essential services like doctor’s offices and health clinics come with Facebook and Google ratings these days, too. Kartini Clinic is one of them. Unlike restaurants or hair salons, however, we are strictly limited in our ability to respond to reviews, even when they contain content that is factually untrue or even implies active wrongdoing on the part of clinic staff. While we are always grateful to receive constructive feedback and are eager to work with families to resolve any issues they have during their time at Kartini Clinic, when problems are expressed in the form of an online review, our options to respond are very limited.

These reviews have also sometimes become a way for our young patients to express their frustration during a difficult period in their lives. One example occurred very recently: a spate of negative reviews, at least one of which was written under a pseudonym, claiming to be patients or friends of patients at Kartini Clinic appeared in a matter of hours. Though treatment is spent working with parents and patients towards a positive, often live-saving goal, there is no question that the day-to-day process of recovery can be difficult. As we have discussed on this blog before, eating disorders are brain disorders. As with any brain disorder, children who suffer from them may be  looking at the world through a distorted perspective — including, in many cases, an inability to acknowledge that their disordered eating is problematic at all. This is a clinical phenomenon called anosognosia.

(Incidentally, this is also partly why Kartini Clinic believes so firmly that weight restoration must be the first step in treatment. Malnourishment only exacerbates these problems. No one’s brain functions properly when they’re starving.)

Parents, we urge you to engage your children on this subject. Please help us to ensure your child is expressing their fear and frustration in a constructive way. And if you have any feedback for Kartini Clinic, we encourage you to reach out to us at help@kartiniclinic.com, where we will be able to directly address your concerns. We always welcome the scrutiny.

We also invite parents to share their family’s experiences at Kartini Clinic, either publicly or privately. Private comments may be directed to an individual staff member, or to help@kartiniclinic.com. If you are willing to share publicly, you may do so on Google or our Facebook page.

Guest BLOG: F.E.A.S.T. on Euthanasia and anorexia nervosa

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Some of you may be shocked by the concept of euthanasia for people with eating disorders — we at Kartini Clinic certainly are.  The concept of ‘assisted dying’ has recently been a hot topic, along with the ethics of ‘forced feeding’.  Below is the position statement of the FEAST organization, a parent-driven support network for those who have loved ones suffering from eating disorders.  They are powerful and vocal in the eating disorder community and they have taken on this issue headlong.  Kartini Clinic supports their stance and with their permission are reproducing it here as a guest blog. – JOT
 
F.E.A.S.T. POSITION STATEMENT
July 8, 2019
EUTHANASIA AND EATING DISORDERS
 
Recent news reports of a 17-year old Dutch eating disorder patient who died of starvation after asking for euthanasia services have raised a worldwide discussion around eating disorders. As an organization of and for family members of those affected by eating disorders, we feel it is important to offer our perspective on the media coverage of this issue.
 
We want to make it clear that we are not able to speak to the specific and deeply tragic death of Noa Pothoven in June 2019. The case has been discussed widely, and often inaccurately, in the international press. While Pothoven’s request for euthanasia was denied, she did die at home in June 2019.
 
Our sympathy for her family is particularly sharp. In our community, we are all too familiar with the disabling and lethal consequences of eating disorders. We cannot and do not speak with specific or personal knowledge of her family, treatment, or her legal situation, and can only speak of the issues surrounding such a case. We extend our deepest condolences to Noa Pothoven’s family and all those affected by her loss.
 
Treatable Disorders
It is one of our central tenets as an organization that eating disorders are treatable. Regardless of the cause of the illness or the treatment history to date, we believe the science supports pursuing treatment for eating disorders even in cases that have been unsuccessful or complex. No eating disorder sufferer should be considered beyond help. In the words of one parent in our community: “If there is breath, there is hope.”
F.E.A.S.T. holds that hope for all who can be reached and supported, and their families.
 
New Prognosis Data
In the past, pessimism about the prognosis of eating disorders after the first few years of treatment was assumed. More recent analysis of available data sheds light on the tragic inaccuracy of that assumption. Not only are treatments improving over time, but longitudinal analyses are showing a greater optimism for recovery as seen in a recent study that indicated that after 22 years of illness, 63% of those with anorexia nervosa were fully recovered. Fully half of those recoveries were after over nine years of being unwell. Data for bulimia recoveries also had longer horizons than formerly believed: recovery rates reaching 68% in the first nine years
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Dr. Craig Johnson, Senior Consultant at Eating Recovery Center, puts this in context:
 
“We should be very cautious about giving up hope for recovery too soon. I have been caring for these patients for over 40 years and during this time I have witnessed many patients achieve full recoveries after struggling for decades with these illnesses.”
 
Concerns about Coercion and Force Feeding
Often those experiencing eating disorders are left not only resistant to treatment attempts but sometimes unable to see how impaired they are. Family and treatment providers can have concerns about “forcing” a person to be hospitalized or nourished, or to be limited in compensatory behaviors. It is useful to assess for “anosognosia,” a brain-based deficit in insight about the condition itself. Research indicates that those put into treatment against their wishes still recover at similar rates to those who are not.
 
No Easy Answers
Our community also acknowledges that not all eating disorder patients will recover. These are tenacious and dangerous brain disorders that uniquely challenge our treatment, legal, social, and family systems. Those experiencing eating disorders are often not ONLY facing an individual eating disorder diagnosis, but other health and personal challenges, including co-occuring psychiatric issues. Those with longer courses of illness also suffer from health challenges, losses of relationships, and financial burdens. We cannot expect those suffering from eating disorders to maintain a focus on recovery when they are unwell, and not all sufferers have others to hold that hope for them.
 
Eating disorders are often accompanied by symptoms that defy intervention and exploit the gaps in our social and healthcare systems. Families and supports, are often not equipped with information or the ability to contain these powerful symptoms or lack access to treatment that will support them in doing so. The resources for eating disorder treatment are, at this time, scattered and overstretched in most areas of the world. Most treatment, while well-meaning, is not grounded in up to date understanding of the neurobiological and nutritional course of the disorders. We cannot blame patients or their families for these gaps. We must accept that it is our responsibility as a society that only a fraction of those with eating disorders ever get treatment, and those who do usually do not get enough.
 
As more countries offer the option of medically ending one’s life when near death, or euthanasia when suffering is unremitting and untreatable, eating disorder patients seeking to end their lives present unique questions. F.E.A.S.T. has observed in recent years a growing number of families being asked by loved ones about the option of euthanasia or assisted suicide.
 
These are not simple issues:
·     Suicidal thoughts, despair, and anosognosia are common symptoms associated with eating disorders
·     Patients are often asked to show motivation and compliance to access treatment
·     Families are routinely exhausted, unsupported, and bankrupted for care that stops before remission and each treatment attempt depletes resources
·     Those with eating disorders are often extraordinarily articulate and intellectually engaged, despite demonstrable impairment in perception and insight around the eating disorder
·     Patients often suffer from debilitating health conditions and disability after years of dietary restriction, binging, or purging. Heart, bone, digestive, and dental health are often permanently harmed.
·     Relationships are also casualties of protracted mental illness, and those with eating disorders can be isolated and alienated from their community.
 
As an organization of family members, the idea of euthanasia, ‘assisted dying’, and assisted suicide for eating disorder patients hits us particularly hard. We know that the feeling of despair and lack of hope can be temporary, and we know that our loved ones cannot always see the future or the past as we can.
We know that the despair of our loved ones is real, and we want to alleviate it because we love them and feel a duty to take action on their behalf.
 
We fear our voices will not be heard or understood because we know how movingly and articulately clear our loved ones sound to others even when they report symptoms and events inaccurately or without context.
In the F.E.A.S.T. community, there are many among us whose loved ones lost their lives to suicide or have survived suicide attempts. Many families among us whose children were suffering so deeply at some points that they asked to die, went on to not only survive but to full and robust recoveries.
 
In the words of one F.E.A.S.T. mother, Lisa T.: “My daughter begged her doctor and us to let her go to palliative care as she was unable to see a way out. Today she’s alive and healthy because we understood and fought for her.”
 
Another parent in our community, Judy Krasna, F.E.A.S.T. Board Member and parent advocate in Israel describes her feelings this way: “The most responsible thing that I can do as a parent is to never give up on my daughter, despite all odds, because recovery is always possible, even when it’s improbable.”
 
In her 2019 testimony before the Maryland Senate considering an Assisted Suicide bill, representing the Maryland Psychiatric Society, Angela Guarda, MD, Director of the Eating Disorders Program at The Johns Hopkins Hospital, published here with her permission:
“I had two recent cases change their mind and contact me from hospice, where they were certified as terminally ill by their physician. Both improved dramatically with appropriate treatment and left hospital hopeful for their future. Under this (assisted suicide) bill they could be dead.”
 
F.E.A.S.T. Advisor, Jacinta Tan, Ph.D., who has studied the issue of compulsory treatment, calls the idea of assisted dying for people with eating disorders “very concerning.”
 
“Eating disorders can impair capacity to make decisions. In some cases, the despair and loss of hope that sufferers feel are related to the lack of appropriate, compassionate treatment and support. We need to focus more energy in developing and providing more effective treatment approaches to support people with eating disorders and their families and alleviate suffering, irrespective of age, severity and chronicity.”
 
F.E.A.S.T. offers the following considerations on euthanasia and assisted suicide when it comes to eating disorders:
·     Lack of motivation and insight should be considered symptoms, not lasting or true beliefs
·     Patients who appear competent and in control may be significantly impaired
·     High levels of intellect and physical stamina can remain despite significant impairment in other domains
·     A desire to die should be regarded as it would with depression
·     Withdrawing treatment can easily lead to death, especially with chronic eating disorder sufferers
·     Undernourishment, bingeing, purging, and over-exercise should all be considered as we would substance use: impairing ability to make life or death decisions
·     Successful treatment does not require, at all stages, the hope of recovery
·     A growing alternative to active treatment, harm reduction, is a consideration
·     Family and clinicians may have significantly different perspectives than the patient and may hold long-term observations of a case that the patient does not hold in the moment.
 
The F.E.A.S.T. Board of Directors does not believe euthanasia, assisted dying, or assisted suicide are an appropriate recommendation when a patient believes that their life is not worth living or likely to recover. These beliefs are known symptoms, neither uncommon nor unexpected during treatment. Eating disorders are treatable, even when the patient does not hold that hope.
We believe strongly that eating disorder symptoms complicate issues around decision making and prognosis. We urge any family or clinician facing questions about letting patients die, or being assisted in dying, to carefully reflect on the considerations above.
 
To conclude, the message of Shannon Calvert, a Lived Experience Advocate and survivor of SEAN (severe and enduring anorexia nervosa),
“I felt desperate and begged to die. I believed that ending my life was the only way to destroy the abuse that was anorexia. The key was having others (YOU, clinician/loved one) not give up. Yet, I finally experienced someone just as persistent as my eating disorder. I didn’t believe anyone would ever beat it down with compassion, but I am more than grateful to admit I was wrong.”
 
F.E.A.S.T. Board of Directors & Advisory Panel
 
The global support and education community of and for parents and carers of those with eating disorders.

Finding Your Sass

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click?u=5a6a90cbb58a1231d7e2b1276&id=f386384ef1&e=4901c4b365 Finding Your Sass blog Aug 2018

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!