August 31, 2008

3/4 of children with mental disorders are not getting the recommended treatment

Parents who have not (yet) encountered mental health care providers assume that, like with drugs, there are certain rules and guidelines to what treatments will be offered. And that they will be followed or you'll be told why.

What is perplexing is that with mental health even when there are rules, the great majority of patients aren't offered the recommended treatments.

Imagine: "An estimated 15 million American children are diagnosed with a mental disorder, but only about a quarter of them are getting appropriate treatment based on scientific evidence."

About a quarter. Imagine how it is in countries with fewer resources.

Why isn't this considered a public health crisis? Instead, it is a crisis in millions of households who trust their providers to do the right thing and have no idea they are getting the modern equivalent of leaches and Dr. Kilmer's Swamp Root.

August 30, 2008

More insights on ED behaviors: chewing gum and stress

One of the signs our daughter was struggling with her eating disorder was in increase in gum chewing (sugarless, naturally). This is well known as a common symptom of those unable to eat - the Minnesota Starvation study documented amazing amounts of gum use. This is usually interpreted as a way to satisfy one food-related urge without actually eating.

But another thing may be at play as well: new research finds chewing gum may reduce anxiety. Lower cortisol, better focus, better performance, less anxiety.

My favorite line in this report: "Study to be presented orally..."

The most "well, duh..." aspect: the study was done by Wrigley, a chewing gum manufacturer.

August 29, 2008

Family-Based Maudsley support in Israel

One of the great things about the work I do is connecting families with resources. Thanks to the joys of Google, I send this out knowing that it may reach families in Israel seeking treatment for anorexia and bulimia for a loved one.

Dr. Joy Jacobs does family therapy in California, and is affiliated with the University of San Diego Eating Disorders program, which offers some of the most progressive and science-based treatment in the world. Dr. Jacobs will be in Israel Sept 26-Oct. 17 to do some therapist training/supervision of the Maudsley model. She is hoping to connect with parents who are seeking FBT/Maudsley support to help them map out a game plan for their family.

If you or another family would be interested in consulting with Dr. Jacobs, please feel free to contact her. She has a website at www.drjoyjacobs.com or you can email her at joy@drjoyjacobs.com.

I have presented at a conference with Dr. Jacobs and I am a real admirer of the work she does and the UCSD program. Parents who have worked with the program have given me nothing but good reports – often after many false starts at treatment for their children.

Please pass this information on to anyone you feel might be interested!

August 28, 2008

Let me bring your wisdom and recipes to the NEDA conference

Hello all,

I'm going to the NEDA conference in September and I would very much like to bring you all with me. Here's how I propose to do it: I want to bring a cookbook of recipes.

I'm thinking of two kinds of recipes: the food kind, and the recipes for recovery. On this forum many families have shared their tips for foods they served during recovery - but also their tips for recovery.

Please help me!

Go to this new page at FEAST and fill out the form there with your recipes. They can be your family's story, or your family's recipe for muffins, or your list of tips. You can list your favorite additions to oatmeal, your mantras for coping, or your list of supports.

We'll put them in the recipe book we'll have on the FEAST exhibition table at NEDA, and we'll create an online version for parents to use.

Share your wisdom, your traditions, your tastes!

With gratitude,
Laura

August 27, 2008

I blame it on my mom

Parents don't cause eating disorders, but my mother did make me an activist. My parents are life-long social justice/peace/civil rights activists who recently retired from their jobs to do their activism full time. So now you know where I get it from.

My mother is a delegate for Iowa at the Democratic Convention this week - I'm driving myself crazy looking for her and dad on the convention floor every night on TV.

Here's to mom, here's to being part of the solution, here's to believing it matters.

August 26, 2008

No soap box here

It struck me recently how pervasively the sensitivity to the fears of an eating disorder patient can lead us to try to avoid those stressors. The easiest examples would be avoiding fats, 'trigger foods,' 'junk food.' And even when we draw the line and say 'you need fat, you need full nutrition, you need to face your food fears' we can still built a cocoon of safety on other things.

Things like the (stupid, sexist, devaluing, offensive) media.

Like thinner people. Or fatter people. Like even benign comments about appearance.

Like stress and eating out and change and - LIFE.

I've grown sensitive on a lot of these issues as well, and I'm starting to wonder if I've gone off the rails.

We don't ban soap commercials for the benefit of people with compulsive hand-washing. We don't close down the Space Program because it validates the irrational fears of schizophrenics who believe they've been abducted by aliens. But in the ED world we do avoid "triggers" and try to change the environment around the person.

Perhaps that is a seductive approach because things like size 0 models and sexism and stress really ARE things to hate.

I don't have an answer... I'm just thinking.

August 25, 2008

Olympic proportions

The Olympics are over, and they were fascinating, but this is the first time I've watched them through the prism of being an eating disorders treatment activist. (Last time we were still in tender post-recovery, and last time she was actually IN Athens with family and I remember less about the athletics than family drama...)

What ended up interesting me most this time around was the ethics and judgements of the public on the bodies.

* The disapproval of the Michael Phelps Diet: Don't Try It at Home.
* The admiration, instead of concern, for those who damage their health to win
* The absurdity of calling it tragic that an athlete's efforts to hurt himself were thwarted to revive him
* The wide spectrum of body types that excel in different sports
* The idea that we need to "overcome" biological differences between men and women
* The fact that the dramatic potential and true heroism of the Paralympics ** and the Special Olympics are not newsworthy

** added, rightly, per remarks below!

August 23, 2008

Persistent brain changes seen in former anorexics

It continues to distress me that people think the brain doesn't need food, or a minimal amount will do, or that you can just opt out of certain foods or nutrient groups and your brain will make do.

It doesn't.

It is still unclear how much of an eating disorder precedes and how much is the result of restrictive eating, but this is clear: the brain is horribly damaged by malnutrition and erratic nutrition. Purging and restricting and bingeing do damage to the function and learning and structure of the brain. And you don't have to be "underweight" on some chart or visibly unwell. Anyone who is working to stay at or avoid a level of nutrition that the body resists is at risk.

Brain damage is invisible, but: persistent brain changes seen in former anorexics IS visible in behaviors and thoughts that perpetuate the illness and make for a miserable life. We should have a zero tolerance attitude about malnutrition.

August 21, 2008

A unified theory?

I love the title, naturally: The fault is not in her parents but in her insula but I've also been a long-time fan of some of the authors.

I've pointed to Lask's work before in this blog and my website. I'm happy to say that Frampton is on F.E.A.S.T.'s Advisory Panel.

I wrote of Nunn's kindness back in 2003 in my book.

And he said something back then that strikes me now: that we'd probably understand this illness "in five years."

I'm off to get a copy of the paper with great anticipation. I am so deeply grateful for those out there who are trying to understand this illness.

August 20, 2008

A message in a bottle that never made it to my beach

I did not see this video when it came out in 1999. I did not see it in 2002 when my daughter became ill. I saw it today for the first time, because a kind parent posted a link at Around the Dinner Table and another thoughtful parent urged me to link to it at FEAST.

I wonder how much easier our family's journey would have been if I'd seen the BBC video "Living_on_Air" back then. How much less uncertain would I have felt as I tentatively brought up biology to the disdain of a succession of people I assumed knew better than I.

Knowing now that it existed then actually pains me. Since then I've met some of the people interviewed and become huge fans of their work. And I've been around to see the beginning of real changes. But still it irks me: the content in this video will still, in 2008 be a surprise to too many patients, their families, and clinicians. This tool that I will now be urging parents to watch was available all along.

August 18, 2008

Access

In some fields of medicine, a patient and the family can expect to hear from the doctor and other clinicians a similar list of questions, and a similar list of answers. If there are choices of treatments, the patient will be offered a list of pros and cons. The decisions will be based on science, experience, and professional guidelines.

In psychiatry.... not so much.

It is really hard for a parent to know what treatment approaches are possible, available, and most likely to be helpful.

This is why I am so deeply thankful to Dr. Cynthia Bulik, one of F.E.A.S.T's Advisory Council, and to Joseph Ingram at John Wiley for the generous offer to make the following articles available to the public for six months after FEAST requested open access. I believe parents and caregivers want this kind of information and will be thankful for this opportunity.

Mr. Ingram has asked FEAST to let him know the results of this experiment - to send him feedback. It would mean a lot to me to hear from you: did you read these papers? Did they help you? Did you share them with anyone (family, friends, clinicians, teachers...)? Was there information that you didn't know, or will now use in a practical way?

Outcomes of eating disorders: A systematic review of the literature
International Journal of Eating Disorders
Volume 40, Issue 4, Date: May 2007, Pages: 293-309
Nancy D. Berkman, Kathleen N. Lohr, Cynthia M. Bulik
Full Text: PDF (184K)

Anorexia nervosa treatment: A systematic review of randomized controlled trials
International Journal of Eating Disorders
Volume 40, Issue 4, Date: May 2007, Pages: 310-320
Cynthia M. Bulik, Nancy D. Berkman, Kimberly A. Brownley, Jan A. Sedway, Kathleen N. Lohr
Full Text: PDF (140K)

Bulimia nervosa treatment: A systematic review of randomized controlled trials
International Journal of Eating Disorders
Volume 40, Issue 4, Date: May 2007, Pages: 321-336
Jennifer R. Shapiro, Nancy D. Berkman, Kimberly A. Brownley, Jan A. Sedway, Kathleen N. Lohr, Cynthia M. Bulik
Full Text: PDF (169K)

Binge eating disorder treatment: A systematic review of randomized controlled trials
International Journal of Eating Disorders
Volume 40, Issue 4, Date: May 2007, Pages: 337-348
Kimberly A. Brownley, Nancy D. Berkman, Jan A. Sedway, Kathleen N. Lohr, Cynthia M. Bulik
Full Text: PDF (138K)

August 17, 2008

Forced treatment or forced urgency?

Forced treatment of patients with anorexia

"...it may be better to admit the patient before the BMI drops below 13"

When are we going to "admit" we have mistaken a grave illness for a willful behavior and stop waiting until people's bodies have been ruined before we take action?

August 15, 2008

a good mental illness to have

Eating disorders are devastating. EDs ravage lives, destroy families, and kill.

But they can also -- unlike other very serious brain disease -- be successfully treated. Bipolar, schizophrenia, severe personality disorders; these can be treated but not cured.

Eating disorders, especially if caught early and treated assertively, do not have to be long-term or a constant part of life. After full medical restoration and the healing of the brain and cognitive processes, a patient can go on to live a life free of eating disordered behaviors and thoughts.

Not easily, of course, and not quickly. It takes enormous effort and support and usually some skills-building. People who have a genetic/biological predisposition to eating disorders cannot do things other people do, like diet or live deliberately stressful lives, or lose touch with self-care -- which actually seem like excellent goals for all of us.

But permanent, full recovery is attainable* - and I don't think any ED patient, or his or her family, should be shooting for anything less.

* For a description of recovery, and some inspiring interviews with parents and patients who've experienced it, check out FEAST's Recovery Page.

The light reflects back


I don't object to researchers studying parents and parent characteristics. I don't object to examining family dynamics and functioning - hey, if you've got the funding, knock yourself out.

But every researcher who studies stuff like this:

Depressive tendencies and lower levels of self-sacrifice in mothers, and selflessness in their anorexic daughters.

Is not studying stuff like this:

Randomized control trial of the medication Quetiapine, in which they will receive either the study medication or a placebo. In addition, they are offering several months of family therapy treatment for families with adolescents between the ages of 12 and 18 at no cost.

And frankly, it all reminds me of the story of the drunken man who was searching for his keys under a streetlight even though he'd lost them somewhere else: "because the light is better."

If you keep searching into family pathology (a dead horse, but rich with potential since families share genetic personality traits and grow quite strange under the strain of a member's illness), you are choosing to continue the legacy of blaming parents and thereby setting them adrift from the families their illness also wants to destroy.

There is plenty to learn about eating disorders. But first you have to decide where to shine the light. And that decision sheds some light on you.

August 14, 2008

is anorexia about being thin?

"The biggest myth is that anorexia is about being thin"

'"These patients are not choosing this behaviour," says Bulik, who's considered an international expert on the disorder. "You could go to any eating disorder clinic around the world and the core clinical picture would be identical. There may be different cultural presentations or variations on the packaging, but the core signs of low body weight, an extreme drive for thinness, amenorrhea (absence of menstruation) and often hyperactivity and anxiety just jump out at you as saying this is biological in origin."'

August 13, 2008

Why not 100%

Why don't we shoot for 100% of "ideal body weight?"
Why does the definition of anorexia start at <85%?
Why are target weight set at minimums and hospital discharge set at minimums?

A lot of it has to do with patient "tolerance."

This is like setting chemo at one dose short because they've been through enough. Or only removing most of the tumor to prevent a larger scar. Or setting insulin amounts a bit low to stunt growth to save future insulin.

This short-sheeting of treatment is a factor in relapse rates. In chronicity. In lack of response to psychotherapy. In a loss of family resources and social supports.

If I could wave a wand and only change one thing wholesale, it would be this: 100%.

August 12, 2008

Listening to patients

My focus, in the ED world, is on parents. Not because I care more about parents than patients, but because I think getting information and resources for parents is one of the most important tools for helping patients and their families.

And the reality is that a chronically ill patient (or worse) isn't alone in the agony: a whole family, a community is affected. The loss of a full life touches everyone.

But of course, the patient is the focus. F.E.A.S.T. has just published a page of letters and interviews of patients - telling parents their feelings about treatment. Over time we'll add more, and we welcome your comments and additions.

August 11, 2008

Brain yoga

People are talking about: a study comparing treatment retention between Cognitive Behavioral Therapy with Cognitive Remediation Therapy for the treatment of anorexia nervosa.

For more information on CRT, this paper is very dry but great explanation of the four forms of cognitive inflexibility - also addresses the neurobiological reasons this inflexibility could occur, and how therapy works to build functional flexibility. Brain yoga, really.

My favorite line: "experts tend to be more cognitive inflexible"

And on the topic of other innovative ideas in ED treatment, you may be interested in getting DIRT-y with Danger Ideation Reduction Therapy. Danger Ideation Reduction Therapy.

August 10, 2008

Parent as case manager

Parents are used to being in charge of the household, checking the homework, researching summer camps, and smiling modestly at award ceremonies.

But mental illness is out of our safety zone. Just like cancer, we go into this believing we must leave the really scary stuff to the professionals. If a mental health professional tells us to sit down we sit down. If a psychiatrist tells us to back off, we comply.

Here's what parents need to know. If you consult 10 mental health professionals you will get 12 sets of answers. Some of them are going to be wrong, some are going to be a waste of time, some are going to be half-right, and some will be able to save your child's future. And no one is going to tell you which is which.

With mental health care you as parent can't be passive. You can't go to the closest clinician or the one who can see you first and stop there. You can't only look at clinicians in your insurance network. You can't read one book and you are done.

As scary as it is, you will need to be the case manager for your child's care. You don't have to be the doctor/psychiatrist/counselor/nutritionist/social worker; you just need to be the case manager. Find good clinicians, develop a relationship of mutual trust with them, ask good questions, and listen to them.

This isn't just your right, it is your responsibility.

August 9, 2008

"Secretly, I wished my parents would care more."

I spend a lot of my time as an ED treatment advocate fighting the same two things. One is a fear on the part of parents that their children truly don't want their help, and may get worse if they intervene. The other is the idea that parents don't care.

Of course these are related. Because both of these (mis) perceptions come from listening to the illness: Secretly, I wished my parents would care more

"Truthfully, I’m also a little excited to start cutting back on my food intake and to lose weight. Even after so much time, my eating disorder is still a large part of my life, and I’m not sure I’m ready, or even want, to let it go."

Heartbreaking. How does a parent see through such thinking and action to know what to do? I know the parents care. I know the parents feel helpless and confused.

I believe 'separating the illness from the person' is one of the best skills a parent can employ. Listening to the actions and needs of a patient instead of what they say and think. Understanding the cognitions of the ED as a symptom, not free will.

But who is going to tell the parents that? Who will translate? ED?

August 8, 2008

Too healthy for the Olympics

Knocked Out of Olympics, Russell Deals With Disappointment

The routine nature of the self-abuse discussed here is so distressing to me. This is athletics? This is sport? This is healthy pursuit of greatness?

How is this different than taking steroids, or "performance-enhancing" drugs? How is this different from behaviors that trigger eating disorders?

Why is it okay to do this to oneself.

This man didn't fail at his sport, his body failed to cooperate in hurting him more.

I used to love the Olympics. Now I can barely stomach it.**

By far, the most bizarre and ironic part is this: "I came in 100 percent healthy"

** And that's even before we bring up human rights, Tibet and Darfur.

August 7, 2008

The biology of blame

Dr. Keel, her blog post The Biology of Blame, Part II, nails it with one perfect sentence:

"The problem with biological determinism is not biology, it is the determinism."

August 6, 2008

Snickers of both types

OK, can't resist this. Was watching TV and the word "FEAST" caught my eye:

Greensleeves Snickers

How did they hide a camera at one of our Parent Council meetings?

August 5, 2008

Making the Internet a safer place to be...

I'm staying at a relative's house with no wireless. Imagine: our campground had five bars, but suburban Virginia...nada.

So I have Panera Bread's free wifi to thank for being able to blog today. The manager just offered me a free smoothie, so I'm duty bound to credit the resource. May have to buy another sandwich...

F.E.A.S.T. has a new project to announce: the Media Outreach Project. We've already had some successes in asking websites and organizations to update their information about eating disorder science and the role of parents in recovery.

Please join us in identifying places where parents might get outdated information, and in praising sources that 'get it.'

Let's make the Internet and other media a safer place for vulnerable families seeking information.

August 4, 2008

America the Beautiful

The eating disorder world doesn't agree on much. There are huge internal controversies about a lot of things, including the role of the media.

I fall into the camp that says our media's narrow profile for beauty (not just size and shape - many elements) is damaging to us ALL. The relationship to eating disorders is subtle. To my mind although media images may encourage using food to change appearance (thereby triggering eating disorders in those genetically programmed this way), the media's ideals mostly serve to obscure illness, justify illness, and provide a ready "reason" for eating disorder behaviors and desires. It keeps the rest of us from recognizing serious brain disease, and makes us look like hypocrites to our ill children, and confuses the public about the seriousness of our loved ones' thinking.

But I still HATE the beauty ideal in the media. Can't watch TV without squirming, can't look at magazine covers without discomfort, can't enjoy popular movies because the general way a body type strays from the 6 foot size 2 ideal is as a punchline.

I think it damages us ALL, men and women, child and adult, tall and short, regardless of size. Eating disorders are not the measure of this damage. The damage stands alone. The sadness of it all stands on its own merits as poisonous.

I'm looking forward to seeing the documentary America the Beautiful next month during a day of events sponsored by EDC in Washington. The film has been embraced by the eating disorder community, as well it should. But I am interested not just as the mother of an ED patient. I'm interested as a citizen of the world.

What do you think the relationship is between the beauty (or the 'make you feel ugly') industry and eating disorders?

August 3, 2008

I am eating foods that I've never had before in twenty years

Dear Laura,


I just wanted to let you know how great I think your work is around eating disorder awareness and FBT. I think you and other parents/providers working with MM are on the right (and innovative!) track in terms of conceptualizing tx for eating disorders.

I'm a patient who has had anorexia for 20 years - I am 32 years old and was diagnosed with AN when I was 12. When I first heard of Maudsley about 5 years ago, or so, I was somewhat appalled at the idea of parents 'force-feeding' (which I now know is not the case!) their anorexic children - all of the misinformation with which I'd been brainwashed through years of traditional ED treatment had me convinced that forcing an anorexic to eat was cruel!

While MM would not have been an option for me, due to chronic abuse in my home environment, I've come full circle in realizing how much this method truly makes sense, in appropriate situations. To elaborate, I've had many, many stints in treatment settings of all kinds - including one inpatient stay lasting two years. I've been labeled "chronic and treatment resistant" and while I have maintained a desire to recover, I have found true change elusive. Through traditional treatment, I have gained insight upon insight into the mechanics of my eating disorder, which is largely trauma-based, and yet for all the treatment days, dollars, and wasted time, I had yet to make any considerable and lasting gains in terms of my symptoms. I would enter treatment, restore weight/health, and then be discharged and immediately fall back in the same cycle. I had many 'expert' treatment teams and yet with each one, the ED would find loopholes in their treatments and ways to stay in control. I was told it was my 'choice' and when I tried to explain otherwise, I would be further slapped with labels like "manipulative" or "failing to take responsibility." I found traditional tx to be rather punitive. They would let my health spiral downwards until finally someone would corral me into treatment yet again.

Fast forward to five years ago, when I began treatment with a psychologist who had no experience in treating eating disorders. I was in a period of my disorder then where I was relatively stable and was seeking to further work on my trauma history, hopefully to put it behind me for good (easier said than done!!).

For a few years, we farmed the ED tx out to other specialists - RDs, groups, an IP/PHP programs...and each time, I would feel that it just wasn't connecting. Being a non-ED provider, he was also perplexed at what appeared to be a broken and ineffective way of treating eating disorders. He was stymied by the fact that once out of the hospital, I was seemingly unable to eat, and yet the RD would leave me to meal planning, etc. and a 'contract' that stated I needed to get 75% of my meal plan in a day. His question: "Why would anyone agree that you only need 75% of your minimum nutritional requirements?!"

It was clear to him what needed to happen, and that was full nutrition, right away, with no allowance for my ED. About a year ago, he decided, with my permission and help, to take a more active stance in my ED recovery, since clearly traditional tx was not helping me get anywhere. His instincts are much like that of MM parents - full nutrition needs to be a non-optional requirement for participation in life (and in this case, treatment with him). There is no more negotiating with the ED, no more whittling down the plan to be 85%, or only include xyz foods. It is refreshing to no longer have to sit and discuss ad nauseum my feelings about eating pizza, or carbohydrates, or fat, or whatever - and just be encouraged firmly to DO it. He realizes that while the ED can sound logical and has run circles around the best of the best care teams, there is no logic or compromising with it.

He helps me make menus that include all sorts of 'forbidden' foods, and once the menu is made, there is no negotiating or changing it. While it may seem improbable, for the first time in my 20 year treatment history, a treatment provider is absolutely insisting that I eat full nutrition every day, and is no longer leaving me the option. If a meal is not completed 100% per our agreed upon menu, I head to the hospital. I have to contact him after every meal to let him know I completed it.

While it is difficult to do this on my own, at home by myself, knowing that I have an advocate against the ED is a tremendous relief. There are times the ED tries to pull me off course and fights back, and fights with him, tearfully pleading for reprieve, but we continue to try to fight against this illness that has haunted me for over half my life.

I've had other providers tell me they think what he requires is 'cruel' and will set up power struggles and a feeling of loss of control, but really, this approach is the ONLY thing that has worked.The proof of its efficacy is in the outcome so far - I am eating foods that I've never had before in twenty years. I am also doing the best I have symptomatically than I ever have in 20 years. Many of the AN traits are diminishing with full nutrition. And all of this is with the outpatient help of a non-ED clinician who really just instinctively guided us in the right direction!!

When I then found your bulletin board and blog, I realized that others had discovered similar methods and were met with success, too. I am now hopeful that I will continue to move forward and be able to heal both from the years of AN as well as my past trauma. I just thought I'd share and say thank you - it is so clear to me now how much sense this treatment method makes and I am glad you are getting the word out.


M.

August 2, 2008

nononononono

nono no no One Thousand Times NO: Pigging out for fame

How many layers of misunderstanding and pathology and madness have we here?