December 31, 2007

She has a dream

I end 2007 with optimism -- I have had the honor of witnessing quite a few recoveries this year, and families on the mend.

And in the spirit of hope, I join my friend, Shannon Cutts, in her fierce message to the US Congress:

I Have A Dream of a World FREE from Eating Disorders Petition

December 30, 2007

The cure for sleepiness is sleep

Snorting a Brain Chemical Could Replace Sleep.

The reason given for seeking such a drug is that 70% of us don't get enough sleep.

Um. The cure for sleepiness is sleep.

This might seem obvious if we didn't live in a culture that thinks it can avoid hunger while dieting, feel full without eating, and have energy without food.

December 29, 2007

Guilty as charged!

And the award for the best possible way for a mother to cause an eating disorder:


For more condescending and silly comments from 1943 on how parents make their kids sick, see the whole chapter of "Eating Inhibitions in Children in Relation to Anorexia Nervosa," because:
(And make sure to check out Harriet's post on metaphor and meaning for more on poetry and psychiatry.)

December 28, 2007

psychiatric advance directives: a possible tool for caregivers?

I have not yet heard of this tool being used with eating disorders, but I wonder if psychiatric advance directives (PAD) might be a useful option for US families with older children.

A PAD can be revoked, but it does indicate that a sufferer has at some point in time both been diagnosed and had a care plan that caregivers and family can use as a compass. Certain basics can be established, such as a contingency plan in case of relapse, who to inform in a crisis, treatment goals and parameters.

One of the most heartbreaking situations is where parents watch helplessly over an ill loved one who refuses to let all parties communicate clearly, or capriciously changes the treatment plan. ED distorts and stymies attempts to help. Too often, ED is in charge and clinicians' hands are tied.

More tools are needed. I'd like to hear if anyone is using PADs for eating disordered patients. I'd also like to hear what similar laws or tools exist in other countries.

December 26, 2007

"effort after meaning"

In the 1930s, a psychologist named Bartlett coined the term "effort after meaning." It describes the phenomenon of people making sense of something retrospectively.

Connecting dots not meant to make a line.

We do this a lot with eating disorders. In an earlier era we found meaning in starvation as a sign of piety. More recently we looked to oral impregnation fears, powerlessness, and media objectification of women. Depending on your background you might see in eating disordered behavior a sign of a disconnect with G-d, the pathological modern family unit, of identity crisis, of the unrealistic pressures and expectations of modern life.

Presently, the fashionable effort after meaning concludes that EDs are the far end of a quest for thinness. This saddens me deeply. Yes, it seems at first to be obvious and irrefutable, but so did refrigerator mothers and choleric humors. If you observe an eating disorder up close you realize it has nothing to do with thinness. In fact, anorexics and bulimics are so disconnected from their true body composition they may be the only ones left in modern society who AREN'T really on a quest for thinness. They've either long since passed that goal or are blind to it.

It is up to us, and the rest of society, to resist using eating disorders as a metaphor for the ills of society. Our conclusions matter.

December 25, 2007

For the brothers and sisters

Today is our son's 10th birthday. Happy Birthday, son, and thank you for just being a brother when your sister was ill, even though you didn't know what an eating disorders was. Siblings get a raw deal when their brother or sister is ill and their parents go batty with worry.

I just asked Elijah "what do you think eating disorders are?"

He said, "mom, stop sucking my brain for stuff for your blog. Ask the dog. Can I open another present now?"

Thank you for keeping us grounded, dear.

The dog says "Merry Christmas."

December 24, 2007

Resolution

In my earnest and prosaic teens I prepared New Year's Resolutions. In my late 40s, I wake up to an electronic "to do" list and queue of actionable email. My success rate on both methods of controlling my life are equally imperfect.

On the topic of self control and food, then, comes interesting work on glucose levels and impulse control. What is interesting about this study, discussed here as well, is that we know that the opposite ability seems to be seen in anorexia.

Dr. Shan Guisinger believes some percentage of the gene pool responds paradoxically to malnutrition - as a survival mechanism for the larger society.

They GET focused self control when hungry. The rest of us lose it.

Guisinger thinks of people with eating disorders as heroes, as "the descendants of Joan of Arc." She also thinks that heroes, on achieving their goals, are supposed to be nurtured back to health by a grateful society. Picture little Joan at your dinner table, or in Intensive Outpatient group therapy.

That ability to focus is also lauded by Dr. Walter Kaye, whose years of research into the biology of EDs has led him to conclude: "There are some positive aspects to this kind of temperament,” he said. “Paying attention to detail and making sure things are done as correctly as possible are constructive traits in careers such as medicine or engineering."

December 23, 2007

Roaring writing

I'm a writer first, activist lately, so it was a great honor to be included in Harriet Brown's Roaring Lion post.

The Roaring Lion honor comes with two delights: I get to name three qualities of powerful writing, and then pass the designation to five powerful writers.

Powerful writing, to my mind:
  • Addresses fear. The reader's fears, and especially the writer's.
  • Lingers. It travels with you an hour, a day, for good.
  • Hurts a bit. Because you wish you'd known, or wish you'd written it yourself.

Powerful writers I know:

December 22, 2007

"Family therapy" sounds like "Family-Based Therapy"

Very important new article available over at the Maudsley Parents site.

Dr. Angela Celio Doyle, of the University of Chicago, has clarified the history and meaning of the term "Maudsley" and how it relates to other terms like "family therapy" and "family-based therapy." And it matters: clinicians and clinics all over the world are starting to say "yes, we offer that" when they do not.

"Family therapy" and "Family-Based Therapy" can actually be opposites: one is about the family being the problem, the other starts with the assumption that the illness is the problem and the family is the solution.

Parents, it is up to us. Ask good questions, listen carefully, and express yourself if it doesn't smell right. The right clinical support can save your child's future and life. The wrong approach - and it is out there...enough said.

December 21, 2007

Fork You, Eddie

I'm a big fan of Carrie Arnold and her writing. She has waged a long war against her eating disorder, and has an ability to describe her experience without the crutch of simply following a dogma or policy line. That isn't easy for a writer, and I'm guessing it is even harder when you are a public figure representing an illness.

She's also wickedly funny, and sometimes profane, so when she names her marvelous fork necklaces "Fork You, Eddie" she means what you think she means. My daughter and I both have fork necklaces and love them!

She's donating profits to NEDA, which is in my opinion the best organization in the US at bringing together all people involved with ED and pressing for real improvement.

December 20, 2007

AN in THIS century

The parents at the "Around the Dinner Table" online forum are talking about the video presentation posted online featuring Dr. Sloan Madden in Australia on the neurobiology of anorexia nervosa.

Among the tidbits to watch for: what is known and NOT known about the brain and AN, a bit of gossip about different approaches, and Madden's way of making the idea that media or parents or patients cause EDs seem so last century.

Stick around for the Q&A at the end - it's worth it.

(Thanks to Carolin G. for introducing us all to the video!)

December 19, 2007

Scary skeletons

It baffles the mind, but it is still common for people to think that a person can delay weight recovery, stop short of full weight recovery, or even recover without weight recovery.

I won't go into the reasons why you don't want to steep the brain in the ED thoughts that result from malnutrition, the depression, and the effects of social withdrawal on a young person's personality. The infertility, the exhausted heart muscle and lifelong gastrointestinal effects. Forget death, and the family and relationships sacrificed to ED.

Just one factor, for some reason, does seem to reach even those who are really ill: your bones weaken and dissolve when you don't get 100% of your nutritional needs. They recover when you do.

December 18, 2007

Are 'super thin' models invading your brain?

I've mentioned the research before, but this article from the Times Online gets more to the heart of the dispute about cause.

It's a brain thing.

My daughter told me long ago that it wouldn't matter if she had lived in a cave in the Arctic circle without access to the media - her anorexic mind would use anything to justify itself before she was re-fed. She could walk by 10,000 people of average BMI but it would be the one underweight person she would see.

I think it is insulting to people with eating disorders to even compare the severely distorted cognition and the suffering of fighting it with what those without eating disorders think or feel.

My daughter's brain was built differently. With a lot of help and work it healed, and she had to become stronger than the illness to keep it from coming back. She fought a demon that most of us never, thank goodness, have to see.

December 17, 2007

Relapse risk

When normal becomes normal again, most parents' focus turns to a fear almost as bad as at the beginning: "what about relapse?"

"The strong effect of insufficient weight gain during first admission and lower BMI at first discharge emphasizes the importance of adequate interventions."

For home-based treatment the rules for long-term success are the same: sufficient initial weight gain, and don't quit before the job is done. But we have an advantage: time. We can assure maintenance of weight and behavior and supportive environment for longer than any insurance policy or home equity loan checks to residential treatment.

December 15, 2007

Stakeholders

To parents new to the upside-down world of eating disorders: good news. Things really ARE better now, and the pace of change is no longer glacial.

In 2002, when my daughter became ill, no one talked about Family-Based Maudsley treatment, it was difficult to find ANY reading material that did not blame parents or tell them to back off, and I felt almost a heretic saying I didn't believe I, or any parent, caused a child's eating disorder.

It is changing. This week I was encouraged to join the Academy for Eating Disorders as an affiliate member by two leaders in the organization. They wanted me to know that although it may not have been the attitude in the past, AED now wants the stakeholders at the table in this way. So I did.

But perhaps a greater indication is this: AED has published my video, Do Parents Cause Eating Disorders? on their web site. This is an amazing statement of support for all of us.

There is much to do, and much to change, but with more of us at the table I am optimistic.

December 14, 2007

"Mom, I'm going to try crack cocaine!"

Even baby rats know that dieting leads to bingeing - and that's the healthy response. If you don't correct under-nutrition, either your brain or some other part of your body is going to give.

And a growing child who doesn't get enough food and variety of foods is on a diet. A child who is active and not eating freely is on a diet. A child who says he or she wants to eat "healthy" and cut out food groups is on a diet.

We have to start treating the words "I'm thinking of going on a diet" with the same alarm and engagement as "Mom, I'm going to try crack cocaine."

December 13, 2007

Are YOU looking at ME?

Learning about Body Dysmorphia was really instructive to me. Before I understood about the phenomenon of normal people seeing one of their features - literally seeing - grossly distorted, I thought we were dealing with people who over valued appearance.

In truth, if my nose truly grew to ten times its size or one side of my mouth drooped completely to the side, or even if the change was a severe case of acne - it would affect me emotionally. If I thought my body had become larger or smaller - and everyone insisted it was not - I would become distrustful and frustrated.

And although BDD has not been conclusively linked to eating disorders, the distorted body image of those who suffer from eating disorders - especially before they are weight restored over a long period - is described so well in BDD that I recommend everyone in the ED world read "Broken Mirror" to understand the phenomenon.

A recently published study of BDD patients has offered some insight: "detail encoding and analysis rather than holistic processing." In other words, the brain may be focused on the trees and blind to the forest.

December 12, 2007

Don't buy my book

OK, this is really stupid, but I'm going to recommend that you pay these 25 pages of wisdom for $30 before you buy my book.

The article "Anorexia Nervosa Among Children and Adolescents" is an authoritative overview from the perspective of a very experienced adolescent medicine specialist - one who also happened to treat my daughter. The article was published in 2005, but I was recently re-reading it and wished I could send it to every parent - and clinician - I knew.

On lab tests: "falsely reassuring, as patients have been known to die with 'normal lab values.'"

On BMI: "not useful for children and young adolescents"

On refeeding syndrome: "occurs mostly in hospitalized patients receiving an excessive nutritional load without phosphorus supplementation...not found in the dieting, untreated patient with AN, because phosphorus is found in nearly all the foods she consumes."

On psychotherapy: "Psychotherapy is not compatible with the starving brain." ... "Statements about 'making psychological progress' or 'gaining insight' about their condition are unacceptable without accompanying weight recovery."

And this: "In the 21st century, psychotherapeutic treatment of patients with AN without medical backup is akin to malpractice."

December 11, 2007

She burst out laughing

Harriet Brown's essay in the New York Times today says it all when she says of her daughter: "she burst out laughing."

Recovery is more than eating, and takes courage and stamina. The milepost of success, though, may be the ability to laugh - together - at a mad, mad world.

December 10, 2007

Zap that ED away!

Always on the lookout for innovations in treatment, today was the first time I've heard report of using deep brain stimulation for anorexia. Small study, extreme cases, but interesting.

DBS has been used to treat Parkinson's and depression. And vagus nerve stimulation has been used with bulimia, depression, and epilepsy.

It makes you wonder, if therapies like this can work, what are they fixing? Not society. Not the bullies, or the models, or swapping out for different parents. Something in the brain is being altered, or blocked, or reconnected. There is so much to learn.

December 9, 2007

Roots and wings

The sport of chiding parents for being too involved with their their children annoys me. The snide undertone to all the "enmeshment" and "helicopter parenting" talk is really: "you're limiting your child's independence."

Nonsense. This let-them-go sensibility is peculiarly modern and flies in the face of human social history. Strong families and familial connections are a good thing.

But it never hurts to be reminded:
"Close Families Raise More Independent Adults"

(thank you, Chris, for sharing this link!)

December 8, 2007

how can you treat what you cannot measure?

I do not think we can make much progress on changing diagnosis, treatment, or public opinion on brain disease unless we can measure it. Although the pursuit of biomarkers for brain illness is progressing, it is still "early days."

I am so glad to see some real analysis of this issue going on out of BYU. The authors of "Towards a physiologically based diagnosis of anorexia nervosa and bulimia nervosa" have identified several empirical methods of diagnosis that do not depend on self-reports.

Among them: leptin, cortisol, insulin, neuropeptide Y, glucose, bone mineral density, free thyroxine, sex hormone binding, hypochloremia, and several others.

As opposed to the SCOFF, EAT, BITE, EDE, BSS, DIET (love these acronyms!) questionnaires - pretty much primers on "how to throw off alarm by your loved ones AND learn about purging methods you hadn't even thought of yet."

Or the most common: "weight."

Without reliable and quantitative measurements, people really don't believe in an illness. Without measurement of sickness there is also no clarity in diagnosis or way to measure recovery or compare treatments.

If you are interested in the full text of the BYU article, email me.

December 7, 2007

What does "mental illness" sound like to you?

Up until now when I said "mental illness" I meant real, organic, brain function broken sick. Like schizophrenia and depression and Alzheimer's. I mean the brain is ill.

But recently I've realized that some people hear "mental illness" and think that means NON-brain-based illness.

Uh, oh. This incoherence is a disaster: it really is important that we all use the same words to mean the same things. Insurance companies are fighting over this, saying EDs are not biologically-based disorders. 12-step programs want to see EDs as addictions. A certain treatment center that does not play well with others has come out and said EDs are NOT "mental illness" because they ARE "medical" and not "mental."

Oy. I guess the term "mental illness" has little meaning.

So I am now resolved to call eating disorders: "brain disorder." Just like schizophrenia and depression and Alzheimer's and bipolar. Brain disorder.

You can argue with me about whether I'm right, but at least we'll all be arguing about the same thing!

December 6, 2007

in US, Friday, one call, you are needed

If you could pick up the phone one time and improve the lives of countless people in just 3 minutes, would you?

Mental health parity means insurance companies would have to treat brain illness as real illness. That treatment for eating disorders and depression and all the ways the brain can get ill can be paid for on an equal footing with other illnesses.

On Friday, December 7, in the US, we can all use the toll-free Parity Hotline, 1-866-parity4 (1-866-727-4894), to call representatives and senators and leave a message urging their active support for the mental health and addiction parity legislation.

This isn't an empty gesture. These calls are counted, and every call indicates even larger numbers of people care. This isn't just an eating disorder issue: this bill could make material difference to untold numbers of families with any brain illness. And no, this will not mean the insurance companies will go out of business.

The EDC Family & Friends Action Network suggests this message:

Message: “I am calling to ask the senator/representative to not let another year go by without passing mental health and addiction parity legislation. Please work with the Leadership to pass parity now.”

If parity is not passed by December 21 the issue may be lost to "election year deadlock."

Many, many very good and very smart people have worked hard for YEARS to get to this point. Let's do our small part to support them, and each other.

Three minutes. You can spare it. You matter.

December 5, 2007

Love the therapist you're with?

Despite being the only eating disorder treatment for adolescents that has an evidence base, few families have access to a Family-Based Maudsley therapist. I live in a major US metropolitan area, and I know of only 2 within 2 hours of here.

Yes, basically, I'm making a full-time unpaid occupation of building a market for something for which there is very little supply. "If you come, they will build it."

Families unwilling to participate in the wait-in-the-lobby-we'll-call-you-in-if-ED-says-so approach often have to do a sort of "build-your-own" approach.

1) ask your current clinical team to have an adult-adult meeting to explore changing the approach to a family-based one, bring literature.
2) interview all the therapists in your area (again, I know) to canvass their openness to a new collaborative approach.
3) travel to a clinic that does assessment and helps you set up FBT/Maudsley support at home (UCSD, Boswell, etc.).
4) explore phone or video conferencing with a Maudsley clinician not in your area.
5) consider a short inpatient stay at a Maudsley-friendly clinic where the emphasis is on medical stabilization and training the family for smooth transition to home-based care.

The right professional support can mean the difference between success and failure for your child - and also between being burned out afterward or being strengthened as a family.

The wrong support...well, enough said. You deserve the right support. Don't settle for less.

December 4, 2007

Environment starts in the womb

One of my (many, I know) pet peeves in the discussion of what causes eating disorders is the "nature vs. nurture" badminton match.

Those who like to dismiss nature choose to see biology as genetics alone. They use "nurture" to mean environment and environment to mean "how mom behaves and dad doesn't behave and how society objectifies and how peers influence."

But environment starts in the womb. The prenatal soup is part of "nature" AND "nurture." This has been known for a while, of course, but media reports always like to use a breathless "who'd a thunk it" quality.

Twin studies are fun, because they elucidate nature and nuture. Just sharing a womb with a twin can influence your chance of a later eating disorder, as do more older siblings and having fewer brothers , smoking during pregnancy, a strep infection - all biological influences that are not (completely) genetically coded.

Eating disorders are real, biologically based brain disease - with behavioral symptoms; good treatment is both biological and psychological. We've got to stop batting the birdie over the net at each other and start talking - over a good meal - about solutions.

December 3, 2007

Holiday gift giving!

Please, please forgive me. But really, if I did not share this book recommendation I might hurt myself laughing all by myself. I know someone on your gift list NEEDS this book.

"How to Good-Bye Depression: If You Constrict Anus 100 Times Everyday. Malarkey? or Effective Way?"



(Many thanks to Vaughn at Mind Hacks for the heads-up on this - or heads-down, maybe? And hello to the many new visitors I will get to this blog for using the word 'anus')

December 2, 2007

An anorexic brain

Now that we can actually see the brain working by using "functional MRI," researchers have watched the way people without an ED history compare to weight- restored people's brains in response to positive and negative risk and results.

Even a year after weight restoration, the test subjects' brains didn't see much difference between positive and negative reward.

They were, essentially, stumbling blind, unable to learn from experience. That's no fun. No happy face for doing well, no warning bell to alert of danger.

Positive and negative felt the same. Imagine responding the same to a slap as a hug. Imagine how chaotic and annoying it would be if things seemed to go right or wrong around you without rhyme or reason. You get sicker and people get more frustrated with you, but it doesn't matter what you do. You would feel - does this sound familiar? - as if you "have no control."

What does this mean for caregivers? Patience. Love. The long view. And protect our loved ones from negative consequences of the ED until the switch gets fixed or there is a work-around in place.

p.s. Got to love this quote on the BBC news: "This shows how the brain might be important in eating disorders."

December 1, 2007

Express yourself!

Essential parental vocabulary phrase: "expressed emotion."

"a qualitative measure of the 'amount' of emotion displayed, typically in the family setting, usually by a family or care takers"

Contrary to what you may think, this is not considered a good thing.

"The three dimensions of high EE shown are hostility, emotional over-involvement and critical comments" and it is measured formally through the Camberwell Family Interview, which uses verbal and non-verbal measurements. There are also other tests.

If you appear hostile toward your (hostile) child, take too much responsibility (over-involvement) or too little (critical), you may be perceived as putting the patient at risk of relapse and poor prognosis.

Don't feel bad, though, the same judgment is made of parents of kids with other mental illnesses, and even of nurses.

For my part, I can tell you that my high EE, at times, was directly related to the attitude of the clinician and the current status of my daughter. When things were going well and we were all working well together: low EE. Perhaps EE is a measure of the clinician as much as of the family.