February 28, 2009

"Homeostasis fails"

I'm still not here - I'm off writing. But before I left I leave this for you, complete with poetic alliteration and phrases - like "homeostasis fails":

Perplexities and provocations of eating disorders

Aside from the literary merits, it is also a must read for the content. Fascinating and helpful!

February 27, 2009

It's not work, it's therapy

I'm not here.

I've gone to a lake to be alone with a stack of books, an old dog, and two manuscripts to finish.

My husband has long said that writing for me is a need, not a want. He's implying that I'm not as personable as I could be when I'm not writing regularly. Probably true. And here's some evidence that my need to write is more than just an irritable muse: Pen Mightier Than Passion.

February 24, 2009

She Died

A mother on the Around The Dinner Table gave us this news this evening:

As a mother, as an advocate, as a member of the Around the Dinner Table community, I honor this this mom for coming back to tell us. I honor this family's attempt to help their dear daughter and sister.
I hate eating disorders.

Washington Post piece about Maudsley Approach

It would be a great day if it was only that the Washington Post published a piece on eating disorders that had great, useful information.

It would be terrific to get just one Googleable mention of "Maudsley" in a major newspaper.

I'd be tickled any day to be quoted in the Post, and have a link to F.E.A.S.T. out there for parents to find when they need it.

I love that since I know Tom, I can hear exactly how it sounds when he says: "Contrary to the general belief that kids with anorexia nervosa have an iron will, it's the exact opposite..."

But there is a special joy in the fact that A Girl's Suffering Drove Her Parents to Explore a New Anorexia Treatment is written by my friend, Carrie Arnold.

Carrie, thank you for giving the public a well-written, moving, USEFUL article that will live on for years. One thing I hear a lot from parents is "if I'd only known then" and "no one told me that this was an option." Well, a lot of families will now "know now" and someone "told them." And often, that is all a family needs to get going in the right direction.

You have saved lives today, Carrie. And futures, and families.

Deeply grateful, on behalf of our family and all the many families who need this,
Your fan and friend and admirer,
Laura

February 21, 2009

What's up with the rabbit?

What a fascinating and strange news story: Computer Program Called Healing Rhythms Helps Battle Eating Disorders

Biofeedback is a well-established technology, and I'm intrigued to see it being used for eating disorder patients. But I get the feeling the writers must have just thrown this piece together for CBS in five minutes. The person interviewed didn't use the technology. The technology reporter talks about "anxiety-related anorexia".... is there some other type of anorexia? And what is up with the rabbit?

February 20, 2009

Ebony and The Daisy Duke Diet

I am notoriously skeptical about the role of the media in causing or even "triggering" eating disorders. It's an attractive theory, and it lines up all the usual suspects, and who doesn't like to sneer at popular culture? But I've never bought it. I think our media says something about how the REST of us have a problem, and that just makes it harder to help real eating disorder patients recover.

To my liberal dismay, I agree with almost every word of The Daisy Duke Diet by Fred Schwarz on National Review Online, which I only read on the recommendation of Carrie Arnold who only read it on the recommendation of Tiptoe. .

I did disagree with this part: "...for some reason, viewers of films and television, male and female, tend to like CoverGirl-beautiful actresses rather than healthy ones." And here's why.

I came of age in the early 70s in a college town, mixed race family, mixed religion, feminists, peaceniks... We didn't go to church on Sunday, we painted signs and went and picketed something. Part of this Raised Consciousness involved my mother ruining all TV, magazines, movies and even cartoons by pointing out the obvious: that almost everyone was "white." (Now she'd say "European American" - she's still evolving) We had a "Black is Beautiful" poster in the living room. My mom actively protested the idea that beauty had to be a certain flavor of western European. She knew from painful experience how black kids and Latin kids and Asians grew up feeling dirty, ugly, and out of place in society and my mother wanted that stopped.

She got her wish. It is no longer remarkable to see black actresses and models and movie stars, not to mention all colors.

Sizes and shapes.... not so much.

But we can change. It takes people like my mom and all the wonderful activists out there to get it done both in our homes and by our actions. We can refuse to accept one standard of beauty, and we can refuse to value appearance above what we DO and who we are. We should, and we can.

February 19, 2009

Angry parents

To become an eating disorder parent activist I had to face death. Not just face the terror of losing my child, but also join and spend time with those parents who have lived my worst fear.

I have had the honor of meeting quite a number of parents who became activists after losing a child to an eating disorder. It was scary for me at first. Awkward. Humbling. I flinched, mumbled, deferred. I fought the impulse to run away and found myself wondering what right I had to say one word about this topic when my daughter survived and this mother's child did not. I won't say these reactions have entirely gone away, but I have learned this: to be brave and listen. What would I want, if I was strong enough to reach back to help others after losing a child? To be heard. To have my child be heard - whatever message I thought he or she was saying.

I don't always agree with what these parents think caused the eating disorder or what they think we should all do about the problem. Some blame themselves, and some blame society - I would argue with both directions. Others blame poor treatment, lack of adequate treatment, and how society's lack of understanding blocks treatment - and those ideas I couldn't agree with more.

But two things seem to tie all of us - ALL parents and caregivers - anger, and hope. Anger that this illness should threaten our families, and hope that speaking out will help. Anger and hope: the balance of which is a constant struggle for any activist.

"Father's anger"
"We need to help these families."
"Anorexia didn't kill Heidi; the system did"
"It doesn't bring Anna back, and it doesn't stop the pain, but it gives some meaning to something that is meaningless"
"There has to be a way to do this better"
“Every single voice helps chip away at denial.”

February 18, 2009

The enemy of my enemy is a parent, too

As a parent activist, I often look to the autism parent community for inspiration. The parallels are many: an illness that strikes in childhood, was once cruelly blamed on parenting, and an activist community that has changed public opinion and professional practice dramatically in one generation.

Ah, but there is also the cautionary tale of how vehement feelings on both sides of the vaccine debate has divided the activist community.

When positions are so deeply taken, a win for one side, as in court nixes link between vaccines and autism is necessarily a blow to others who would otherwise be one's allies.

There is a lesson there for us in the ED community as well, I feel sure. We are all fighting the same illness, the same feared outcomes. We will not all turn out to be right, but we will always have more in common than different.

February 17, 2009

OK, but why?

Since FEAST published a position statement on Parentectomy, I have heard from parents overjoyed we took a stand on this. Parents described being excised from treatment, isolated from loved ones, left out of decision-making, and treated as unnecessary if not harmful to the recovery process. Not all, and not all the time, but frequently and harmfully.

From clinicians I have heard two responses: "bravo" or "that doesn't happen any more."

The ones who say "bravo," for the most part, are the ones who offer family-based treatment and run clinics that treat the illness as just that, and the family as part of the treatment team.

The "that doesn't happen any more" has come from, in two cases, clinics that severely restrict parent access to patients. At one, parents are allowed one hour a day with hospitalized patients - in a hospital where other wards offer rooming-in for parents. At the other, visitation must be arranged in advance and requested to be brief.

This may seem obvious, but why would that be? Why would eating disorder patients, even small children, be treated so differently from other ill people? Why wouldn't parents be able to stay with their children, or be welcome for visitation other times than 7-8pm on weeknights and 1-3 on weekends? Why are parents optional in the daily lives of their children with an eating disorder, but not leukemia or knee surgery?

Why would eating disorder patients be restricted from seeing parents based on their "cooperation" with treatment when the illness itself causes that lack of cooperation? Why would phone times be restricted? Why would a patient need to "earn" time with his or her parents? Are they being hospitalized because they need medical help or to get them away from the home?

There is a cost to losing one's daily contact with parents. The damage of the illness being compounded by alienation from the central adults in one's life. How, do you imagine, does a young person of any age feel about the family they come home to - when that home and parenting was so unnecessary during hospitalization?

Not all clinics have these kinds of policies, I might add. Some eating disorder clinics actually require parents to be there, some begin training the parents from the first day in how to manage meals, how to address resistance, in the dynamics of the illness, and in the stages of recovery.

And if those clinics don't consider parentectomy part of the treatment, it calls into question why anyone would.

February 16, 2009

Simple, cheap, and objective

I've got an armload of questions to ask about it, but I have to applaud ideas like mid-upper arm circumference is a simple, objective method of assessing nutritional status.

BMI is a controversial way to judge health - but it is also a fairly easily manipulated one. Patients game weights all the time in all sorts of ways. Having a reliable and simple measure like this is an interesting angle. I look forward to hearing more about this.

February 14, 2009

the functional role of food

This frustrates me:
Parents are told that their kids need to eat in order not to die, in order to preserve their bones, and to prevent medical complications. We are rarely told that the food repairs the brain and treats the eating disorder THOUGHTS.

More often, parents get the impression that weight gain can only make the patient feel worse - after all the patient keeps telling us they feel fat. Seeing the distress that eating causes, parents are often the first to agree to lower calorie levels and minimum target weights. After all, why push it? Food is only a symptom, right? At least she's eating.

No: Food is medicine. Eating disorder thoughts and perceptions fade with FULL weight restoration. The body generally (not always) stops feeling larger than it is when it is reliably fed and stabilized. The sense of social isolation, the obsessive food rituals, the need to control food intake: these all abate if not go away as the brain heals - especially if done as soon as possible after diagnosis.

Is it enough? For many it is. Others need more help. But is it optional? No.

Parents need to know that full weight restoration and full nutrition do feel far worse than starving and purging FOR A WHILE. Think of it as the "bends" that divers experience when they come up too fast. But like undersea divers, they have to come up. Staying down there is not an option. Staying a quarter inch below the surface may be better than three feet down but it ain't living. And it isn't recovering, either.

And if your child's treatment team hasn't told you that, you need to seek medically based clinicians who will.

February 13, 2009

Smart people with broken brains

"I kept seeing that he was still getting straight A's and keeping up in sports."

It is hard, at first, for parents to understand that a loved one is ill when they are still functioning so well at school, still running track, still so motivated to achieve and so articulate and focused. Logically, if malnutrition was damaging the person they would be weak and fuzzy-headed, right?

Lesson 3.5 in Eating Disorder Parenting:
The ability to focus and be motivated can be (temporarily) improved by semi-starvation. The "need" to stay in sports and achieve in school can be a symptom of being mentally UNwell. By the time malnutrition affects academics and even sports, your loved one may be permanently brain damaged or worse.
Homework:
Put recovery before everything else. Refuse to enable any activities that interfere with recovery.

February 12, 2009

Let's keep the fresh theories coming

I believe we know enough about eating disorders to treat them far, far better than we currently are - if we were willing to apply what we know.

But I am also quite happy to take note of new hypotheses and directions:
Low serum BDNF and food intake regulation: A possible new explanation of the pathophysiology of eating disorders

February 11, 2009

My mommy mades me want to vomit

I almost hate to give this sort of thing any attention, but ignoring it doesn't seem to kill it.

Longitudinal examination of maternal psychological control and adolescents' self-competence as predictors of bulimic symptoms among boys and girls.

  • Self-reports by children are... self-reports by children.
  • Correlation is not causation.
  • Genetic traits tend to run in families.
  • Hypotheses sometimes say more about the researchers than the subjects.

Let me interpret the conclusion: "This study uncovers THE PRE-ORDAINED CONCLUSION OF one particular process WHICH WE ARE CONFIDENT ENOUGH ABOUT TO PUT OUT THERE DESPITE THE POSSIBLE MISUSE OF IN PRACTICE wherein a psychologically controlling parenting style, AS INTERPRETED BY A CHILD WHO WILL LATER BE DIAGNOSED WITH AN ANXIETY DISORDER HE SHARES WITH HIS PARENTS THAT WILL GO A LONG WAY TOWARD EXPLAINING WHY THE PARENTS ARE WORRIED ABOUT THEIR WORRIED KID, affects OR IS SIMPLY PREDICTIVE OF adolescents' development of bulimic symptoms, a finding that may be useful to researchers and clinicians WHO THOUGHT SO ANYWAY.

I'm all for families taking a good hard look at our functioning and histories to find the best way to respond to the needs of our kids - with eating disorders or cancer or depression or any illness. Our family did change our lifestyle and learn new parenting skills during our daughter's recovery - but that is a happy side-benefit and a sign of growth as a family, not an indictment of the past. The facile smugness of concluding parents cause bulimia by our parenting style and the easy corollary that we could have prevented bulimia with another style is dangerous stuff indeed. It feeds a paternalistic and judgemental stance toward parents who bring their children into care - a stance that has probably done more damage to families and patients than the loving intentions of "controlling" mothers could.

February 10, 2009

What's mommy eating?

Out of Stanford, a study of parents that doesn't seem to be lighting up the talk shows: Is there a relationship between parental self-reported psychopathology and symptom severity in adolescents with anorexia nervosa?

I'll give it a snappier title: "Do sicker parents create sicker kids?"

In a study of sixty adolescent girls with anorexia, fathers and mothers reported greater levels of obsessive compulsive behaviors, depression, and anxiety than parents of kids in the general population. No shocker there: the traits associated with eating disorders are largely genetic. Sounds like more sympathy and support for the family is in order to help the patient and his or her support system.

The longer the patient had been ill, the angrier dad was. The sicker the patient, the more hostile mom was. Gosh... really? Families under the strain of an illness they are largely helpless to control, feel blamed for, and see their child stolen by - aren't accepting the situation with good humor?**

But here's the take home that no one seems to be taking home: although parents in the study were more eating disordered than the general population, "results of this study do not support a direct influence of parental psychopathology on symptom severity of adolescent AN."

So maybe it is time to consider retiring the "aha" moment where we dissect a parent's eating for clues on why a child is ill and get onto the problem solving of how to address things NOW. Maybe instead of looking for causation we can get on to seeing how this family is suffering and needs help. One member of the family is ill=hard. More than one=even harder.

**"Increasing rates of hostility scores in parents with increased duration of AN may represent either a response to the presence of the disorder or be a maintaining factor for AN."

February 8, 2009

How we help teenagers find themselves

Reading this: How Teenagers Find Themselves, I cannot but think of the interpersonal difficulties and dysfunctional self-perceptions of eating disorders - and how little we can spare full brain health during development.

People who have never really heard of eating disorders have no trouble believing that undereating, bingeing, and purging all cause brain damage. But it is for some reason hard to get that conversation going with people inside the ED world. When I talk to people about this, people without pre-conceived and hardened notions of the meaning of an eating disorder, it is an easy sell: the general public believes that too little Vitamin C causes scurvy and they'll take a Vitamin B supplement if you suggest too little B can cause depression.

It is obvious to most people that skipping meals and undereating is a hardship when it comes to theoretical impoverished children, and everyone understands that the gaunt features of an AIDS patient are not a sign of healthy eating.

So why the disconnect with eating disorders? Why is a teenager eating half of his nutritional requirements not expected to be mentally unwell? Why does it take visible weight loss to signal a need to intervene?

Eating disorder patients need food to repair the brain damage they suffer. And it is brain damage, just like a concussion or a loss of oxygen causes brain damage.

February 7, 2009

"Astonished" is not a good thing

There's bad news and good news here: Researchers 'Astonished' by Anorexia Death Rates

The good news is that treatment does seem to be improving recovery rates.
The bad news: how many ways anorexia kills, and how it lurks waiting for its chance to harm over time.

The news to use: initial recovery isn't the end of our job as caregivers. Instead of "recovery" we can think of of initial stabilization as "remission" and commit to vigilance and open arms and ears to guard against relapse.

It is essential that we look this illness straight in the face and address it with all the courage and force we have at our disposal. Yet along with death statistics we must also do this: realize that death is only a small measure of the suffering of this illness. Patients who linger in anorexia and related brain conditions don't just die or not die - they suffer. Horribly, unfairly, and often alone.

We need better treatment not just to save lives from death, but from the living death of unremitting illness.

February 6, 2009

Triangulation

Eating disorders thrive on triangulation between mothers and fathers:

"We can't expect patients to be happy or easy to live with. We can't expect them to be polite, neat, or willing to cooperate with treatment. We have to expect that their responses will be consistent with the nature of their illness - fearful and resistant to weight restoration. Conflict between caregivers reduces a patient's sense of safety and creates space for ed to amplify triangulation to the point where treatment becomes disjointed and ineffective."

February 5, 2009

predicting depression?

It sounds too simple to be true, but progress is being made on a blood test for predicting postpartum depression.

Prediction leads to strategies for prevention. Prediction means believing in the brain-based nature of mental illness. Prediction means earlier and better treatment. There was a time when people scoffed at a biomarker for any mental condition, but there was also a time when people thought you got ill from wicked humours and dark miasmas. Just because humans haven't figured it out yet doesn't mean it can't be done - often it means they weren't looking!

February 4, 2009

Full text pre-press article on Maudsley now available on FEAST site

Wonderful news: Drs. le Grange and Eisler have given permission to publish a pre-press copy of their article: 'Family Interventions in Adolescent Anorexia Nervosa' on the F.E.A.S.T. website.

I asked the authors back in November if we could offer this paper on the FEAST site because it offers the most up-to-date data on Family-Based Maudsley therapy, as well as a concise history of how family has been regarded in eating disorder treatment. It also describes a newer adjunct, Multi-Family Groups.

I believe this article will be a really wonderful way for parents to introduce FBT/Maudsley to other family members, doctors, and clinicians open to learning about it.

It is also a balanced piece - neither holding FBT/Maudsley up as a silver bullet or a solution for all situations. Cautions and limitations are included.

F.E.A.S.T. is very grateful to the authors and publisher for their generosity and their work to help families and patients!

February 3, 2009

New Hope, PA

The amazing, new, unprecedented quality of this event
Jazz concert benefits victims of eating disorders
is how NORMAL it seems.

That a brother would organize a concert to recognize and honor the victims of an illness is admirable and beautiful. It is always uplifting when a community comes together to support citizens and a good cause.

But I am blown away by the difference in tone and quality with most eating disorder events and news coverage. Not a whiff of victim-hood and shame. A clear and direct explanation of eating disorders. Jazz music!

And all this from a high school student. I salute this young man from - you're not going to believe this - New Hope, Pennsylvania:
Jazzed for a Cure

February 2, 2009

Balanced children

Well we all know how an eating disorder puts everyone in the family off balance, but this is intriguing:

Childhood balance problems linked to anxiety

Co-existing anxiety disorders, and sub clinical anxiety problems, are highly associated with eating disorders. I've heard many accounts of falling and fainting. And clearly, eating disorder patients suffer from proprioceptive issues and body dysmorphia - all magnified by malnutrition. I will look with interest on further research in this direction.

February 1, 2009

a PLAN and a PAIR

From a mother who knows exactly how hard it is, posted overnight to a mother in the trenches who had signed off with exhaustion:

"Jerzy, when you wake up this morning, look what you find here:

(and believe me, you are the first person who's been allowed to even LOOK upon these beauties, let alone get them for their very own)...

I'm loaning you my "pair".Here they are, freshly released from the bulletproof stainless steel, velvet-lined holster ChickenOnASkateboard gave me. They have great power...use them wisely.I'm loaning them to you because you need to stand up to ED in a really meaningful way and it takes a mighty powerful "pair" to do that.

First use them to get yourself a decent team. Sit down with h, x-h, Nanette, d's bf and face facts. You guys are the team captains. Want her to recover? You need to quit spinning your wheels with these slow-motion professionals. Make a plan you can all agree with, and then find the profs who will fit YOUR plan, not the other way around.While you're making plans, divide the labor. Farm out some of that laundry, the care of little s and consider refeeding a full-time job...which it is. Take turns.

Find an MD who can understand what you have decided...interview the doc BEFORE you take your d in and make sure he/she agrees with what YOU--the captains of the team--are doing. You're going to take control of feeding away from your d and you want her to gain 1-2 lbs per week. You expect open communication of all medical issues, including weight. (Give them a peek at this mighty pair if they balk.)

Talk to the n. You liked her, right? Tell her you'll be in the office with your d from now on, not out in the car crying. No more meager increases in calories. Is your d really in danger of refeeding syndrome at this point? What is the point of this poky refeeding? Are you having fun?!! Get her calories up in the 3000-3500 range...not in a matter of months, but quickly. Our ED hospital goes up 200 cal/day. PER DAY! RELENTLESSLY! How can the n help you with this? If she can't...well, do you really need a n?

Make sure the t is also on your page. I think this is the hardest person on the team to find. And yet, I also think it's okay to start refeeding without a t if you need more time to find the right one. A t may not be able to do much good till your d is closer to w/r anyway...you know how irrational she is right now, and how a little bad therapy can go a long way.And lastly, use the power of the pair for yourself.

I get the feeling from your posts that you take your family's happiness as your personal responsibility. (I'm guilty of that too...aren't all moms?) But it isn't. It's not your job to make your d happy or keep her from getting upset at this interruption to her ED. It IS your job to get her through this...she'll be able to come back to you when she's well--and truly happy.

I know I'm not telling you anything you don't already know or haven't already heard. But you sound so overwhelmed. I know that feeling. The cure for it is a PLAN and a PAIR. You need the plan so you can feel confident that you are all on the same page and heading in the right direction: forward. You need the pair so you can MAKE IT HAPPEN.I'm sorry if I've been too blunt. But my heart aches when I see how much you love your d, how slowly her profs are moving her forward and how personally you take the abuse from her ED. It's so hard not to. I want you to get your girl back...and kick ED to the curb.

Just be careful with that pair, okay?
__________________
Colleen