November 30, 2007

Non Causa Pro Causa

Did you take logic at school? Some people clearly didn't.

"Overprotective dad may be anorexia risk factor"

I can hear fathers all over the world weeping as they read their morning paper. Keep reading guys, it gets worse. If you are "underprotective" you're still in the bulls-eye: it's bulimia for your daughter.

OK. Let's review the logical fallacies.

It strikes me that the self-fulfilling prophecy of identifying parent causation of eating disorders is the phrenology of modern psychiatry.

November 28, 2007

Don't worry mom, it's only a hunger strike!

I wondered in my book: what is really up with hunger strikers?

Having seen anorexia up close and personal, I now blanch at the idea of these "fasts" that churches go on in search of teaching children about hunger in the less fortunate. Ramadan fasts and Yom Kippur fasting worry me.

I know that if my daughter got it into her head to skip a meal for charity, not to mention go on an indefinite fast, I'd jump out of my skin.

But once again I discover that the world is completely nuts, and despair at how to convince young people with eating disorders that they are suffering from delusional thinking when Former Anorexics go on Hunger Strikes in public and people send letters of support.

November 27, 2007

This is your brain on depression

A parent on the "Around The Dinner Table" online parent forum, Shawn, recently thanked another mother, Lydia, for showing her this dramatic picture. This photo helped her to visualize the cognitive and emotional lockdown of depression.

Not eating - even low levels of not eating - causes depression. The brain is not working well at all.

Any questions?

November 25, 2007

Keeping your child's illness a secret

Collins is not my real last name. It is a family name I use as a pseudonym to keep my family's privacy. The funny thing is, Laura Collins has her own email and even her own wardrobe, since she is the one invited to conferences - as a small town freelance writer I pretty much live in flannel and khaki.

My daughter says LC even has her own "radio voice."

I don't regret using a pseudonym in my public life. I'm not hiding anything; I'm just letting my young daughter make her own decisions about celebrity.
But I do regret the amount of secrecy our family operated under when my daughter was ill. My husband and I agree that was the greatest mistake we made during our daughter's recovery. The first reason is practical: it hindered my ability to use resources around me. The second was emotional: secrecy falsified my relations with others at a time when I needed others the most. And it kept us separate from those to whom we might have offered support or aid.

But the worst part of secrecy was the message it sent my daughter: that at some level we were embarrassed or ashamed of her illness.

Most people with eating disorders want to keep it a secret. This is partly to protect the illness from challenges. But there is, still, a lot of stigma and ignorance about out there. As parents, we want to spare our children all that - and we are moved by their intense desire for secrecy.

But each one of us who does come forward helps others. We lessen the stigma and ignorance for the next family. And it says to our kids: we are not ashamed of you, or your illness. And we'll stand next to you with pride in private, and in public.

November 24, 2007

2/3 of a cup of food is quite enough

Deepak Chopra has solved the thorny issue of eating disorders, thank goodness.

He says you need to tell the mirror you love yourself, eat when you are "empty," and stop when you are 2/3 full. Eureka.

Conveniently, he knows when your body is full enough, and offers a graphic to illustrate it: 2/3 of a cup.

Better make it of ground beef and not lettuce, I'm thinking.

With authorities like these, who needs the pro-ana web sites?

(truth: your stomach is not the size of a cup. Deepak Chopra does not know how much food you want or need. And eating disorder treatment is not an amateur sport.)

November 23, 2007

Memory bias and directed forgetting

Ever wonder at how someone with an ED can remember minute details of calories and weight but be unable to remember things like "my mother loves me" and "where's my homework?"

The starved brain is, of necessity, very focused. It is acutely attuned to things connected to starvation, and not that interested in other things.

This research is interesting, and the title is poetry:

"Memory bias in anorexia nervosa: Evidence from directed forgetting."

November 22, 2007

"they have to want to recover"

One of the common sentiments in eating disorder lore is: "they need to want to save themselves." or "they have to want to recover"

No they don't.

How condescending to think that ED patients languish and die because they don't "want" to be better, or don't "want it enough."

How cruel to force people to choose to get better, to choose every bite, to resist falling back, and to have insight into the entire process.

And for a child? A child should have to choose whether to get better or worse three times a day plus snacks?

Until they are fully nourished, physically restored, behaviorally stable, emotionally safe, it is OUR job to "want" recovery enough to get the job done. Their job is to trust us until they can trust themselves again.

November 21, 2007

Carer Distress

"Carer" sounds so much better than caregiver or parent. Especially when a child is ill.

And "distress," so much less blaming, more sympathetic.

"Carer Distress" just sounds, at least to my American ear, kinder.

Understanding how parents cope with living with someone with anorexia nervosa: Modelling the factors that are associated with carer distress.

CONCLUSION:: Interventions aimed at improving outcome in AN may need to focus on reducing caregiving strains and carers' distress, particularly of mothers.

Ya think?

November 20, 2007

November 19, 2007

Terrific questions, outstanding answers

You can't spend much time in the eating disorder world without confronting the weight loss industry. I used to duck the issue, because I don't believe eating disorders are a fear of fat or "obesity."

But the truth is, those of us caring for people with eating disorders have a responsibility to know the facts on weight and health - and many of us don't. I sure have had to give up some antiquated ideas.

This 10-question interview with Gina Kolata, author of "Rethinking Thin" is energy-dense and nonsense-free. Great interview questions, and outstanding answers.

November 18, 2007

Marcella, you'll love this one!

Miranda almost died from anorexia. She is eight years old

This inside view of inpatient treatment has details I wish were included in every article on EDs. But warning: it also includes a statement about parent denial that will make your blood boil.

It isn't denial. It is bad information, the natural inclination of a parent to help a child in distress, and a lack of coherence in the treatment world. Parents love their children, and are doing the best they can. You don't expect a mother to create a chemotherapy plan or a father to teach himself to administer insulin.

Train us, however, point us the way, and we will perform miracles.

(marcella, I await your UK view here!)

November 17, 2007

Helicopter parenting

The whole concept of "helicopter parents" is so offensive. The snarky implication that other parents - it is always OTHER parents - are too involved and too enmeshed and just too too.

It is the same condescension visited on parents who "don't care" and appear to be outsourcing all their parental responsibilities.

I've been accused of both ends of the spectrum. And I've got kids on opposite sides of the personality prism.

Kids are not extruded from a factory pipe. Some need more, some need less. When it works out, everyone cheers. When things go wrong, fingers get pointy - for the exact same parenting.

Here's one for the Helicopter parents: "There's an upside to intervening parents. Their children are more engaged in college life, happier and reporting getting more from the experience."

November 16, 2007

A whole new meaning to "gym rats"


When we see someone who exercises obsessively our society tends to admire them. Can't miss a day, feel guilty if they don't go, ignore pain and injury.

What if it was a rodent running on a wheel, unable to stop despite losing weight and losing appetite and eventually... dying. Sounds different, right? Doesn't sound like virtue, or a choice, or a response to society's pressure to be thin.


Got a "gym rat" in your life?

November 15, 2007

PBS show includes Maudsley

I have not seen it yet, but I'm looking forward to a segment of the PBS show, Keeping Kids Healthy, that will air on WNET in New York on Friday, November 16 at 2:30pm. (and again at 6:30am on Saturday)

Once it has aired it will be available online at keepingkidshealthy.org

The segment, titled "Anorexia - Recognizing and Combating It in Your Child," includes a family that used the Family-Based Maudsley approach. I applaud WNET and the Keeping Kids Healthy producers for including this family and taking the time to understand this approach.

And my sincere thanks again to the families who came forward to help me find a family for the producers!

November 14, 2007

Autism, aspergers, and anorexia

Hot topic in the ED world: how symptoms associated with autism may related to anorexia.

In the UK at the Maudsley, and in the US at Duke, researchers are exploring characteristics that may cause, exacerbate, or maintain anorexia nervosa.

Perhaps most interesting is that, as usual, the UK reports emphasize innate personality features like "inability to change rules," "perfectionism," and a "tendency to fixate on details." In the US, the emphasis is on learning and interpersonal skills: difficulty reading the emotions of others, anxiety in social situations.

Autism from two angles. Eating disorders from two angles.

This line of thought is upsetting some, fascinating me. I've heard offense taken in some circles, as if even discussing a link crosses some boundary. As if the pie of public interest is too small to share.

This is an interesting intersection of an illness once thought to be caused/chosen and one with many advocates eager to hold on to that conception. The parallels in terms of how parents, in particular, have been treated, are striking. And parents of kids with EDs, I believe, could learn a lot from autism advocates.

November 13, 2007

World Wide Charter for Action on Eating Disorders

Have you heard about the World Wide Charter for Action on Eating Disorders?

The Charter was created under the sponsorship of the Academy for Eating Disorders, with the input of thousands of concerned people around the world. It sets out some principles that seem like good common sense, and one of them is the right of caregivers to be informed and involved in a loved one's care.

I am part of the AED Patient/Carer Task Force, the Worldwide Charter subcommittee, and the PFN at NEDA that will be helping to introduce the Charter in the US. I'm curious about what the Charter will mean for parents. So tell me, fellow parents, what does the Charter mean to you?

Empowering? Toothless? Inspiring? Incomplete? Shocking? Helpful?

November 12, 2007

Another kind of "feed"

So, you like the blog? But you don’t have time to keep coming to the web site, and you like to know as soon as possible when something is posted, right?

You have two options:


Or: subscribe by adding the blog to your “newsreader.” Don’t know what a newsreader is? Well, if you use Internet Explorer or Mozilla or Opera you have a newsreader included in your program. When you go to a web site or blog and you see a lovely orange square light up on your browser, just click it and follow the instructions. Your browser will let you know when a site updates its “feed.” Or sign up at www.google.com/reader or another web-based "reader" to follow all your favorite blogs (like the list to the right) without wasting time checking and rechecking.

What could be more appropriate than "feeds" when it comes to keeping up with eating disorders?

November 11, 2007

video of Maudsley hospital

For those interested in what goes on at the Maudsley Hospital Eating Disorders unit, there are two pirated videos at You Tube worth watching. They are both from the UK show, "Help Me Help My Child," one featuring a young boy, and another a teenage girl. (see sidebar for parts 2-4)

Groupies of the Family-Based Maudsley approach will notice quite a few differences between the manualized approach and the experiences of these families. Those used to the more traditional American approach will note many differences as well. Fascinating stuff. (Thank you, Claire, for pointing me to these videos!)

November 9, 2007

Mom of 11 year old son with anorexia starts her journey

I have, in the past five years, seen families perform miracles as they made sense of an eating disorder diagnosis, coped with setbacks, found a way, and got to work.

There is so much to learn, and often a lot of things to un-learn.

Yesterday I learned of a mother at the beginning of that journey, and read her blog, "Nourishing my son."

This mom has less to unlearn than a lot of people, and she is eagerly out there gathering information. Go visit her, and send your best wishes.

November 5, 2007

Rare gem: article on EDs and sports that gets it

A set of pieces in the Atlanta Journal-Constitution about high school athletes and eating disorders is 100% recommendable.

Instead of flogging one clinician's press release and illustrating it with one "heroic" fighter (see yesterday's blog post), these journalists have really explored the breadth of this topic and let the issues unfold. No parent-bashing, no patient-shaming, psychobabble-free.

I was completely clueless about youth sports before my daughter took up cross country. I didn't know that eating disordered thinking draws kids to these sports, and I didn't know that clear symptoms of illness are misunderstood, ignored, and sometimes even encouraged by coaches and trainers.

Newspapers have entire sections devoted to high school sports. How much print is spent on the casualties? So glad to see these issues really being explored. That's the first step.

November 3, 2007

Medical journalism explained

I know the NeuroLogica Blogger is talking about another topic (neurofeedback), but his description of popular medical journalism is so devastatingly correct I must direct you all to read it.

His critique of the recipe for media articles on new, and often absurd, medical discoveries is wickedly correct. We've all seen this pattern.

Now, I'm conflicted. I know most media about Family-Based Maudsley therapy reads like this. But as an advocate for the idea (which actually is evidence-based) I'm out there begging journalists to write these stories. I don't know any other way to reach parents, directly, before they get sold the usual (and non evidence-based) approaches.

Writing a book about our experience with Maudsley (anecdotal, I know) didn't light the world on fire. The topic has to keep coming up since most clinicians don't offer it. Yet.

So how do advocates of real science get media attention without buying into the model Steven Novella describes? I don't know. But boy do I love his description!

November 2, 2007

Violence

Sometimes they throw things.

Parents are understandably shocked by the vehemence with which their recovering children fight back when the choice to starve, or purge, is taken away. Behavior and words we never, EVER believed our lovely children would display can surface during early recovery. Yelling, throwing, raging, threats, trying to jump out of cars, violence. Yes, this really does happen.

I am shocked at how few parents are warned about this. And a little mad.

These reactions are signs of the child's extreme distress, not that parents are doing the wrong thing by "making them eat."

What is wrong is letting children get sicker and weaker because they don't get violent. What is wrong is letting kids continue to be malnourished after diagnosis.

However hard it is on us to see them this distressed - it is always harder on them.

It is hell, and sending the child to suffer that hell out of our sight doesn't make it better. In fact, think about it: what would you think of your loved ones if they sent you away because they couldn't stand to see you in such distress. And how safe would you feel on your return?

If parents are not warned and are not prepared for extreme resistance they might feel there is no choice but to give in to the child or give the child over to others. There are choices between those options, and there are strategies, but the first tool is being prepared.

November 1, 2007

"quietly revolutionising the treatment of anorexia nervosa"

Except for a regrettable title, "She ain't heavy - she's my daughter" is a very satisfying article about Family-Based Maudsley therapy being offered at the Westmead hospital in Australia.

Among the highlights are mention of a parent I "know," and some irritable comments by a skeptic who says "there's nothing magical about Maudsley."

Frankly, sometimes the backlash gives more of a sense of an idea's penetration than praise.