January 31, 2008

Parent to parent consultation

This week I wrote to Paul Rhodes, a clinical psychologist at the Westmead Hospital in Sydney, to find out more about the "Parent to Parent Consultation program.

He says: "The key ingredient of the effectiveness of Parent-to-Parent meetings in the Maudsley Model is the message that both sets of parents receive regarding their own efficacy, their own capacity to stand up to the anorexia and gradually win."

Rhodes refers to "insider knowledge," a phrase used by the the therapist, David Epston, to distinguish it from "the outsider knowledge of the professional."

"Circulating insider knowledge from one successful set of parents to one who are still starting and whose potential is still hidden can be a powerful experience, more powerful, at times than standard Maudsley sessions."

Wow. I see that all the time now at "Around the Dinner Table." Parents who have been through it staying around to encourage newer families to find that potential, that power.

The families at Westmead receive both clinical and peer authority to take on the task of supporting their children through recovery. May this approach grow and spread!

January 30, 2008

The sickest patient they've ever seen

Why are so many parents told that their child is the "sickest" "most entrenched" "worst case" the clinician has ever seen?

Most clinicians haven't seen very many.

And most clinicians haven't witnessed the agony of recovery up close at the dinner table -- though too many are familiar with watching a patient sink further and further into illness every week. Patients who are not doing well are often pretty quiet. It is the patient whose illness is being shown the door who kicks and fights and screams.

Parents need -- and deserve -- to know that the tantrums, thrown food and extreme behaviors of early recovery are not unusual. There is no easy, quick, simple, or painless way out of an eating disorder. No matter how compliant and easy your child has always been, plan for extreme reactions and decide in advance what you will do to keep yourself and your family safe and calm. The distress isn't easier in a hospital or inpatient facility or a residential center, though it may be more internal and out of sight.

Extreme behaviors are caused by how sick the patient has been allowed to get, not by treatment.

January 28, 2008

A new name for eating disorder?

Aimee Liu has put out an interesting call to GIVE EATING DISORDERS A NEW NAME.

I'm conflicted - as usual.

The term "eating disorder" is inadequate and bears layers of historical baggage. "ED" is also probably putting a lot of stuff under a single umbrella that deserve individual shelter. I do like a tendency in British English to leave the 's' off 'disorder' which makes the term sound more like a temporary chaos or being out of sync.

Yet the objection to the word "eating" in the name is often to argue that food is not the issue - that lack of food is a metaphor or only a symptom of something unrelated to food. Food IS the issue, though, when you are not nourished. It isn't the ONLY issue, as the results of not eating are long-standing and the difficulties of eating are not simply about finding a fork.

I would like to see new names applied to eating disorders. But first we need to really decide what these illnesses are - endocrine? functional? autoimmune? nutritional? - and have some clarity on effective treatment.

Maybe that is when a name change will be most useful?

January 27, 2008

Weddings as a diagnostic tool?

Diets don't trigger eating disorders in everyone. The self-perpetuating thought patterns of an eating disorder are only set off in people with the right soup of brain function and temperament.

If these people never diet, they may never begin the disease process.

People without the brain chemistry to become anorexic, bulimic, or binge eat when malnourished can toy around with their metabolism and only end up feeling lousy and bad about themselves.

So when we live in a society where major rites of passage basically serve as a diagnostic sweep of the population for eating disorders - Bridezillas on a Diet - can we wonder why so many women are either ill or feel awful?

Perhaps along with the premarital counseling and marriage license blood tests we ought to add "Have you chosen your centerpiece and your ED clinic yet?"

January 26, 2008

Friendship and bread


Guess who (came) to (lunch)?

My virtual friend, Carrie Arnold, and her wonderful mom came to my house and took me out to lunch today! What a joy to put voices and faces to people I've grown to feel were already friends and kindred spirits.

I mentioned in my directions to the house an odd fork in the road to which Carrie responded "Figures you'd live by a fork. :)"

When the waiter came to take our plates he teased me for leaving a bite of food on my plate and tried to get me to finish: a Maudsley restaurant?

I teased her during the meal that I would beat her to the blog about lunch!

Naturally, I sent Arnolds off with a loaf of Amish Friendship Bread and a portion of bread starter. This is the equivalent of a slightly tacky living chain letter, but I hope they got my sentiment: bread, friends, sharing.

Thank goodness for smart women. Thank goodness for lunch.

January 25, 2008

Who says so?

Let's say your doctor takes a dim view of "patients who google" and you are worried about being seen as a loon when you ask about Family-Based Maudsley therapy.

To save you That Look and help you "be a good patient" I have compiled a list of creditable organizations that describe and recommend FBT/M for use with children and adolescents:

Who Says So?

(I welcome more suggestions for this list!)

January 24, 2008

Focus on Fearful Object Recommended

Why does the seemingly simple act of eating help people with eating disorders?

1) Full nutrition restores normal brain chemistry so the patient can be freed from the body distortion, obsession with food, and mental numbness that keeps them ill.

2) The other element is behavioral: facing the phobia that has come to surround food. As with other anxiety reactions, this involves "exposure and response prevention." The patient is faced with the feared stimuli (plates of food) and is safely and compassionately prevented from running away or later ridding the body of the feared thing.

ERP is an important concept for parents to know. As with any psychological therapy, it can't be rushed, and it takes consistency and skill and TIME. Not days or weeks, but many months of sitting in a safe place among safe people, facing that plate, and eating.

January 23, 2008

Why, yes dear: I am trying to make you fat

If you are going to define fat as anything more than a minimum biologically sustainable body fat percentage, yes.

If fat is what you feel you deserve to feel standing at the magazine rack, yes.

If fat is shorter than 5'11" and over a size 3, yes.

If you call it fat to be hungry and then eat food that satisfies you, hell yes.

If fat is what your DNA has uniquely designed just for you, you're right.

If fat is what I am, and most of the healthy adults you know are, yes, I am trying to make you fat.

You can call it what you like. I call it alive, whole, beautiful, and at peace.

January 22, 2008

Psychotherapy and brain activity

People don't choose obsessive compulsive disorders and brain patterns. We're born with a tendency for certain traits. But we're not helpless robots.

We can choose to alter our brains through psychotherapy and habit to
mitigate OCD patterns.

Our brains are plastic for a reason: so we can interact with our environments and respond creatively and in concert with our society. Carrie described this well recently on her blog. An excellent argument for surrounding ourselves with, and nurturing, healthy and caring people.

January 21, 2008

How good a parent do you need to be to "do Maudsley?"

My favorite criticism of Family-Based Maudsley therapy is that it can only work with nearly perfect families.

It is a perfect criticism, because I've never met that family.

Families that "do Maudsley" successfully are not perfect, and families that are darn near perfect are not necessarily going to be Maudsley success stories.

It takes a real change of thinking to accept the Family-Based Maudsley approach, so lets give the skeptics some time to think. Meanwhile, if your child is ill now -- feel free to keep seeking an experienced family-based practice and let them tell you why you are or are not a good candidate.

Carpenters feel good about nails. School nurses have great band-aids. Therapists with our child's life in their hands should at least be expert in the tools of the trade.

Unless you're actually not perfect. In that case, you are on your own.

January 20, 2008

A Unified Theory of Autism

Once again I look to the parents in the autism world for guidance on how we, in the eating disorders world, can understand and use new discoveries in science:

A Unified Theory of Autism

January 19, 2008

20/20 vision - into the past

My husband and I watched the segment on 20/20 last night about adult anorexia with dismay and disappointment.

In 2008 to spend 3.5 minutes on national TV discussing eating disorders without mentioning genetics, neurobiology, and the physiology of malnutrition is unconscionable. This family’s story was used to perpetuate antiquated -- and damaging -- ideas about the illness and to serve as a free advertisement for a specific treatment clinic.

Ms. Harootunian is made to look like a victim of society, her husband, and her parents. 20 years of malnutrition are considered stabilized in nine days of re-feeding -- enough to begin the psychotherapy that is the real reason for her recovery. From malnutrition to full meals appears, on TV, deceptively simple. The overall impression: that this patient needed to find her "voice" in order to recover.

Shame on ABC for creating a “news” item with content that belongs more in the 1970s than 2008.

January 18, 2008

Today is "I love therapists" day

OK, it isn't an official holiday. Hallmark doesn't have a card (I don't think). I've just made it up.

It is time to extend well-deserved and often overlooked gratitude to the many clinicians out there who work hard, and effectively, saving eating disorder patients and their families.

As much as I complain about the BAD ONES, as much as I rail against the incompetent, and as strong as I speak up against the sad history of marginalizing and shaming parents, I am a grateful fan of GOOD, SKILLED therapy.

My daughter didn't get well on her own, and we didn't assist her alone on some mountaintop. Her recovery also involved expert guidance. Three different psychotherapists played critical roles in person and countless more did so indirectly or by way of their books and public statements.

I am deeply grateful to the therapists who helped our family, and to the many therapists who are working toward the same goal we all are: improved lives, improved treatment, improved families.

Thank you so much!

January 17, 2008

Borderline Personality Disorder

It is not unusual, during recovery, for an eating disorder patient to be emotionally erratic, impulsive, self-destructive, and go from paranoid to clingy in an instant.

But some families realize these qualities existed before, and continue long after the eating is stabilized and the body has healed. And it is exhausting.

You need to be aware of Borderline Personality Disorder. Although the name evokes something not quite a problem, the border we're talking about is between dysfunctional and delusional. It is said to affect up to 2% of the population and account for 20% of psychiatric hospitalizations.

BPD isn't a transient issue, either. Personality disorders are a lifelong set of traits. It seems to involve brain abnormality that is only beginning to be understood. It can be treated, but it can't be cured.

Treatment involves very intensive skills-building in emotional regulation and mindfulness. Dialectical Behavioral Therapy is the gold standard and requires a skilled and specially trained therapist.

BPD and eating disorders are often seen together. And the two issues also share a lack of clarity on cause and definition. There is controversy about whether BPD is a useful diagnosis, and whether reports of childhood sexual and emotional abuse are cause or effect of the condition. Parents need to be aware of BPD, and of how this diagnosis impacts treatment of the eating disorder.

January 15, 2008

Adults with eating disorders

Is there really an epidemic of older eating disorder patients or is there just an entire generation of sufferers who were failed by the treatment options available?

January 14, 2008

Celebrating the ages

Something delightful, and nothing whatever to do with eating disorders or parenting:

"People in Order"

January 13, 2008

Where's your blog?

When I wrote my book I thought I'd make my statement and then move on. I hoped I'd raise some interest on the topic but I wrote it as a memoir -- not to become a spokesperson or activist.

I thought that as science repudiated the legacy of blaming and marginalizing parents that I would be only one of many parent activists to write books and give speeches and create web sites.

There are strong voices out there -- Harriet Brown, Buddy Howard, Jan Cullis, Kitty Westin, Mary Ellen Clausen, and Doris Smeltzer, for example. But we really, REALLY need more.

More bloggers, more letter writers, more books, more speakers.

And not only more: we need unapologetic, demanding, inquisitive, educated, focused, ACTIVE mothers and fathers.

There is power in parent activism. Parents have worked together fund research for rare illnesses, change drunk driving laws, build peer support networks, and change the way diseases are treated. Families change laws, support home care for the chronically ill, and fight discrimination.

With some illnesses the patients go on to change the system of care - breast cancer and AIDS, for example. But eating disorders strike young people who need adults to shepherd them through the process. Supporting parents IS helping patients. It is going to take parents reaching out to each other to change the system.

Where's your blog?

January 12, 2008

Trust issues

We can keep arguing whether or not people with anorexia were different before they suffered from malnutrition, but there is no question that it takes more than just regaining healthy body composition for systems to become normal again. It takes time.

Much of the internal repair is invisible to us, but the patient's brain knows things are still awry for many months after the assault of even brief malnutrition. The brain produces anorexic thoughts to protect itself from famine, and it has trust issues when it's been starved; wouldn't you?.

Full nutrition, behavioral stability, extraordinary social and emotional support, for a long time -- they are worth it.

January 11, 2008

To sleep, perchance

I talk a lot about people thinking food is optional and appetite is a matter of morality. I've noticed as a society we have a similar approach to sleep.

The chronic sleep deprivation of modern teens is scary, and yet society not only tolerates it but we encourage it. (Kind of like dieting... the other gateway drug to insanity)

Eating and sleeping, of course, interact : changing our blood sugar and affecting a child's weight metabolism as much as activity and food.

Lack of sleep causes 1,500 auto deaths a year in the US, immune problems, maybe even boosts cancer risk. We are a society walking around intoxicated with exhaustion. Our teens are particularly affected: depression, car accidents, difficulty with schoolwork. They need 8.5-9.5 hours a night, and although they aren't likely to prioritize it, maybe we should.

My daughter's eating disorder was preceded by and precipitated sleep disturbances. Late nights, early classes, skip breakfast, pull an all-nighter, "don't eat after 5," dawn and dusk practices, homework, I already ate, I'll fail if I don't cram for this test...

These days I look at sleep and food as priorities that you schedule life around, instead of fitting them in when we can. I wish I had done so earlier.

January 10, 2008

Listening to ED

"I'm fat"
"I don't feel heard."
"I need to control something in my life"
"It's not about food"

If you've lived with ED, you've heard these things. We should expect them. But our job is to stop listening as if these are rational thoughts. When paired with restrictive eating and/or purging, these thoughts are symptomatic of brain disorder and no more rational than if the delusion was "I'm aquamarine, I hear Hitler talking to me, I need to control planetary movements, I don't need air."

The reason we think these things are rational when eating disordered people say them is because THE REST OF US are irrational. We actually think thin is better (and a choice), we think starving ourselves is healthy living, we think lack of control is a reason to self-harm, and we think food is magic.

We have to get rational in order to help our loved ones recognize reality when they get back. We need to be rational to reclaim our own sanity and health.

January 8, 2008

The view from France

A report from France. Interesting to compare and contrast. The red highlighting is mine:

"I thought you might be interested in our story, from the other side of the Atlantic. We live in France and our 12-year-old daughter began her anorexia freefall in November. As her condition was complicated by increasing thoughts of self-destruction and by a pre-existing explosive-anger issue, we came to the conclusion that our attempts at home-based refeeding could not work for us at this time; despite occasional "victories" at the table, we were fast losing the overall war; we had to get her into a hospital, and quickly, to save her life.

Last week we were very lucky to find an opening at the Hôpital Robert Debré, a progressive public children's hospital in Paris. They have an anorexia unit with 13 beds. Unlike other hospitals in France, they do not believe in "parentectomy". They argue that it's both cruel and unhelpful, a vestige of dark-ages psychiatry. As our psychiatrist put it, "the family is rarely the cause of anorexia, but is very often the solution."

However, visitation and contact with family are counted highly among the privileges that are accorded when the child manages to fulfill her "contract" by finishing her plate (100%) each meal (the week's meals--items and quantity--are agreed to in advance with the child, so there is never a surprise). If the patient can't finish, she is offered an equivalent amount of calories in a drink form; if that is refused, the feeding tube is imposed. If she manages to live up to her side of the bargain she will be able to maintain contact with us 5 days a week (phone calls Tuesday and Thursday; visitation Wednesday, Saturday and Sunday afternoons.) Meanwhile, we are invited to call in for daily updates and we can talk to her doctors directly at any time. The hospital treats anorexia both medically and psychologically. In the first few days she has received full blood analysis, EKG, a brain scan and an EEG. Her heart is monitored every night. The unit provides a tandem team of psychiatrists--one specifically for anorexia, the other for more general issues (depression, anger, etc). They also have a family therapist on the team who will meet with our family regularly to help get us back on our feet and to prepare for the period after hospitalization.

During the hospitalization period, which may last 3 months or more--the children are able to continue their education. The unit has a fully equipped classroom; a team of middle-school teachers arrives every day to run classes for the kids (after consulting with their respective schools to insure continuity in their respective educational programs). Maintaining school is an integral part of the therapy. As anorexics are usually, by definition, high-performing kids, it was explained that the last thing they need is the added stress of worrying that they will fall behind because of their illness.

The cost of all this? The hospital fees come to about 1000€/day (about $1,450), but it is covered 100% by our universal national health insurance, which is offered to everyone (paid for by mandatory employee-employer contributions, or, if the person is unemployed, by welfare). So will this program prove effective? We don't know but the initial signs are positive.

Our daughter has been succeeding at her 1000-cal/day targets since being admitted--triple what she managed to take in at home--and apparently without a fight (at least visibly). She has a very long way to go to build back from her current 64 pounds, but we have reason to be optimistic. Of course, we recognize that we will need to ultimately move into some version of a home-based therapy down the line. You may wish to pass our story on to your readers."

January 7, 2008

When Psych Students Attack

When I get disheartened about the state of ED treatment I try to take heart in the hope that newer generations of better-trained clinicians will clear out the old thinking and improve things.

But maybe not:
Family-based treatment for anorexia? - Student Doctor Network Forums

"I think that method only works for a small, small, special subset of anorectics....When you consider that anorexia often develops out of family conflicts, etc, I don't think that method would work."

"I think this method would crash and burn with 90% of them. Enmeshment and familiar conflict are often a large contributing factors to the development of an ED".

"...only the very tame cases, and the ones that aren't rooted in the traditional pathology, but more in the societal pressures, etc. I would never recommend it, but some do."

Yes, "some do." Like the APA, the AAP, the ADA and the NIMH. Like the ED clinics at Stanford, the University of Chicago, Duke, Columbia, and the UC San Diego. Like most leading eating disorder researchers. That Family-Based Maudsley treatment isn't widely available, despite the research behind it, is because of antiquated notions of family pathology and the condescending attitudes of clinicians who continue to "think" things like the above. It's frightening.

January 5, 2008

Why it gets worse before it gets better

"People with AN enter a vicious cycle which accounts for the chronicity of this disorder because caloric restriction results in a brief respite from dysphoric mood."

Translation: people with a certain kind of brain chemistry feel better when they avoid eating.

"However, malnutrition and weight loss, in turn, produce alterations in many neuropeptides and monoamine function, perhaps in the service of conserving energy, but which also exaggerates dysphoric mood."

Translation: The bad feelings they are self-medicating by not eating get even worse, leading to more restrictive eating.

January 4, 2008

Why the Internet is a dangerous place

Why the Internet needs a truth squad: because this kind of crap is still so common:

Family Influences

Send me your favorite false information quotes. I'm collecting them for a video.

January 3, 2008

Parentectomy then and now

What is it about eating disorders that makes it okay for the child or adolescent to be separated from parents?

"From the early 1900s to the late 1950s, most American hospitals continued to promulgate strict rules separating children from their parents, cloaking them in the language of science. "

This is 2008. Children need their parents. Parents need their kids. Siblings need each other. Separation, or "parentectomy," is a cruel and archaic practice. It no longer happens with other childhood illnesses, and no child has to sleep in a hospital alone after surgery any more.

How do we explain the extremely limited visitation and phone contact that is nearly universal in inpatient and residential eating disorder care? Why is contact with family considered a reward, and why are patients in a position to punish their families by refusing contact?

What is it about an eating disorder that makes parents unnecessary and unwelcome?

January 1, 2008

The future of "Around the Dinner Table"

Happy New Year to all!

In the past year I have heard from so many parents frustrated with treatment, policy, and public perception of eating disorders. I hear cries for change. I have also heard from many families who have offered to help.

One family in particular made a financial donation to the "Around the Dinner Table" forum that was so VERY generous I returned it - for lack of a program that I could apply it to.

I can't do much alone, but I do believe as a group we can really make a difference for families now and in the future.

The first step is to find out what families want. Please, all readers of the forum (registered or not) do me this favor: fill out the anonymous survey at

http://www.misterpoll.com/polls/317722

I will share the results later this month.