December 31, 2007
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 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
December 28, 2007
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 27, 2007
"Three women with BED and two with bulimia experienced a 50% or greater reduction in binge eating frequency during the course of the study. Moreover, two BED patients and one bulimia patient were completely free of binge eating at week 10."
December 26, 2007
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
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
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
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:
- Phyllis Theroux isn't a blogger, but she is my mentor and the creator of Nightwriters, where I learned to "write what you fear most."
- Kristina Chew at Autism Vox does intelligent, fierce advocacy like no one else.
- Carrie Arnold is as pure a writer as I've encountered, the woman has no dogma but truth - even during change.
- For the careening, manic pleasure of her prose, my friend the Counterfeit Farmgirl.
- And the writer who cooks: the Rokenman.
December 22, 2007
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
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
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
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
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
"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 16, 2007
What interests me most are the words people searched for to get here.
Google Search: anorexia force feeding inpatient costs
Google Search: bmi 11 anorexic
Google Search: what is an anorexic
Google Search: fasts for anorexics
Google Search: why parents suck
Google Search: anorexia and controlling mother
Google Search: make me anorexic
Yahoo Search: going anorexic for journalism
Google Search: holiday gift psychiatrist
Google Search: how to make your parents think you are eating
Google Search: force feeding as a solution to anorexia
Google Search: anorexic gift
Google Search: if i wanted to be an anorexic what would i have to do?
Google Search: how to keep being anorexic from your parents
Google Search: how to worsen anorexia
Google Search: anorexics eating forks
Google Search: maudsley doesnt work
Google Search: bulimia parents at fault blame
Google Search: weird treatments for eating disorders
December 15, 2007
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
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
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
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
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
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
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
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
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
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
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
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
"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
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
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.
November 30, 2007
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.
- Correlation is not causation. Look up "shared effect."
- Self reports by (perceptually altered) patients about their parents and home life are not always reality.
- Malnutrition alters cognition.
- Media reports of the paper cited are not the same as reading it.
November 28, 2007
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
November 25, 2007
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
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
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
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
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.
November 20, 2007
Why fashion models don't cause EDs, but the media does complicate recovery.
November 19, 2007
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
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
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
November 15, 2007
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
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
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
You have two options:
November 11, 2007
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
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
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
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
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
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.
October 31, 2007
But since in the U.S. children receive "appropriate outpatient medical care" only 47% of the time for routine issues, I guess I need to lower my standards.
And recent "discovery" that child cold medicines have no proof they work and have caused harm reminds me that most treatments for eating disorders are also untested and potentially harmful.
Scary stuff. Scarier, even, than the prospect of Halloween candy for kids in the middle of an eating disorder!
October 28, 2007
Here's some confirmation of the concept that it isn't "my way" or "your way" but maybe we need both: "Parental Variance Can Help Children" has this interesting sentiment regarding preschoolers (analogous to a teenager during ED recovery, I think):
"When one parent provided little support in response to a child's anger or anxiety and the other parent provided a lot," the child fared better. "In contrast, when both parents provided a lot of support, the child had less insight..."
Note that neither parent being sympathetic isn't an option.
October 26, 2007
If you aren't reading and studying and training in evidence-based approaches, stop.
If you don't specialize in eating disorders, stop.
If you treat eating disorder patients without being part of a team, stop.
If you "mean well," stop.
If you don't think things have changed in the past 5 years in understanding this illness, stop.
If you often find parents of your patients are overemotional, over involved, in denial, and a nuisance, stop.
If you identify more with the ill child than the well parents, stop.
If none of the parents of your patients are well, stop.
If you don't know your patients' parents well enough to know if they are well, stop.
This is a life threatening, family-destroying, potentially disabling, and complex illness. If you are not sure you are the ideal person to treat our children: don't.
October 25, 2007
Naturally, I am interested in research into the demographics of eating disorders.
Many "minority" families don't think of eating disorders as an issue to worry about, and sadly many clinicians buy into that by failing to diagnose eating disorders because people don't meet the profile of the European American middle class female that ends up in most media reports. I know a family whose African American child showed up at an ER after fainting, dehydrated and underweight, unwilling even to take IV fluids for fear of their caloric content but the doc on call never mentioning eating disorders.
I've been pleased to see more attention to research and record-keeping for all people, like this: Prevalence of eating disorders among blacks in the national survey of American life.'
This is everyone's issue.
October 24, 2007
October 23, 2007
"All of the clinicians we've been involved with have seen ED many times before. But it's like they have this weird recipe for ED treatment:
- Muck around with the diagnosis for at least one week (longer if necessary).
- Refer to Nutrionist who will draw up inadequate feeding plan.
- Refer to Therapist who will apply outdated, ineffective methods to the problem.
- Watch patient decline.
- Repeat steps 2-5 as required.
- Home refeeding as last resort.
She goes on to say: "I keep reading in the literature that AN treatment takes years. I think it's only because the most ineffective things are done first, and they'll keep doing them ad nauseum!
"Imagine if your doctor said "I'm sorry, your d/s has cancer. First we're going to try this really old chemotherapy for a few months. It doesn't work, but it's what we've always done. Next, we're going to try other treatments that are ineffectual, while the tumor gets larger. Finally, we'll use another new chemotherapy that's really promising. It works best on stage 1 cancers, but we wait until the cancer's a stage 3 or 4 before we use it."
Thank you, IrishUp, for saying it like it is.
October 20, 2007
This is true, medically. It is also true psychologically. But when I say this to people unfamiliar with eating disorders I am met with incredulity, pity, and disdain.
Messages about children dieting are ubiquitous: "Once your child has stopped gaining weight and is on a regular program of dieting and exercising," "Your child or teen can diet, the healthy Slimkids way while eating foods they like." "What age should I put my child on a diet?
Age 4 and above is a basic answer."
And yet using food to change one's appearance (dieting) is no more effective or healthy in children than adults.
Children should not be on calorie restricted diets. They should not be pushed toward low-fat foods. They should not be taught that some foods are healthy and other foods are bad.
Even low levels of dieting behaviors are associated with higher suicide risk.
And dieting triggers eating disorders.
October 17, 2007
Maybe they need to get a second opinion from a clinician who doesn't say "you can't just make them eat."
Zero to 60. This family seems only to have been given two speeds: let her starve at home because she has a "coping" problem, or separate her from her family for months to be magically cured.
Watch this video, then decide: are you going to send them a check or send them to a Family-Based Maudsley therapist or treatment center. This family is surely going to think I'm a quack, but if they are contacted by enough people they may be able to rise above the Sales Department at the treatment center and seek evidence-based care. It is worth a try.
- Alexithymia: an inability to describe or understand one's own emotions
- Anosognosic: unaware of and lacking insight into one's own illness
- Egosyntonic: symptoms of the illness are in harmony with or acceptable to the ill person
Until they are well - and that takes nutrition, love, and time - we have to do the thinking for them.
October 16, 2007
http: / / video.nbc5.com/ player/ ? id= 165309
Normal, loving family + a skilled clinician using evidence-based practices = a safe landing from a awful disease.
Fly, drive, walk, or crawl to get this kind of support. Run from clinicians who cannot or will not support your whole family to restore your child's health and well-being.
October 14, 2007
This is well-established in Obsessive Compulsive Disorder, but only recently has it been much discussed in eating disorder circles.
And although I have met parents who have pursued treatment based on this, none but the most savvy or lucky parents will be able to even get the kind of specific testing necessary to rule PANDAS out. One mother I know, married to a doctor and well-connected, talked her skeptical pediatrician into testing her daughter only after lots of pressure. The result was positive and antibiotic treatment successful. (No short cut through the difficult refeeding period, however. Starved bodies are starved bodies.)
October 13, 2007
"Lancashire mum dies of anorexia."
This mother of three did not die of anorexia. It sounds as if she died of ignorance around her about the illness. If the article's reporting is to be believed, the family lost a "loving, kind and selfless mum" without being given even basic knowledge of the disease.
"I never found out the reason why Maxine was anorexic and I don't think the people who were looking after her in Bury could get to the bottom of it."
The persistent belief that a patient must find some reason behind the eating disorder in order to recover is a relic, and a dangerous one. Families need education in the dynamics of eating disorders and malnutrition. Patients need recently-trained clinicians who will relieve them of decisions they are biologically unable to make. This woman did not fail; the world failed her.
October 12, 2007
This is not a good idea. At best, hormone pills mask health status. At worst, it damages bone further.
Having a period is not, sadly, a guarantee of medical recovery either. Many bulimics and a good proportion of seriously ill anorexics have regular menstrual cycles.
Real recovery means full nutrition. There are no short cuts through that basic fact.
October 11, 2007
She's there because she had a cold and got disorganized and didn't eat for a few days. Her neighbor found this fiesty, independent, 92 year old widow disoriented and unwell.
At the convalescent home, my grandma is getting huge lovely meals with whole milk and potato chips and dessert and good corn bread. And she eats it all. Does my heart good.
Geriatric anorexia is actually a serious problem out there. A bout of not eating can trigger a cascade of troubles that leads to death. Does this sound familiar?
If you've met me, you know that I always wear a gold fork to symbolize the rule of full nutrition in recovery and to refute the silly notion that "it's not about the food" when you are malnourished. My friend Stephanie Millstein took this shot of me at NEDA wearing my usual lapel pin but also my Gold Fork Necklace made by the wonderful Carrie Arnold:
For my grandmother: the power of the fork!
October 10, 2007
MedJournal Watch is a terrific place to watch that shift both happen and be documented.
October 6, 2007
Just getting my stuff together for another day of the conference:
Last night at dinner, Bridget Whitlow from UCSD's Eating Disorders Program asked me what keeps me from the burnout so common in parents after their child's recovery.
You see, at these eating disorder events the parents who attend are far more likely to be either at the ends of their ropes or the battle has been lost. There are very few parents out there telling success stories or offering hopeful stories and support.
Bridget's question resonated in my head the rest of the evening. Why am I doing this? Why do I spend my time and money and energy on a cause that isn't for my personal benefit - and how do I avoid burnout.
My answer to Bridget was that my parents are political activists and so it has always seemed like both a responsibility and a right to go back and help others over the rough spots you've gotten over. I can also thank my mother's amazing optimistic spirit. I also want to honor my daughter's amazing work at recovery and living well.
But I think when I sit here like this I'm really speaking to the parent I know has just realized his or her child has an eating disorder and you are on the verge of tears all day. You don't know what has happened to the life you thought you were living, and you are scared. You are looking for clues to how to survive this and how to find safety and peace again for your child. I was that mom, and I want you not to feel alone.
Sending hope. I need more coffee. Time to go downstairs!
October 3, 2007
My message of "it's not your fault" is seen as letting parents "off the hook."
(Let's leave aside that this wouldn't even be a question if we were talking about childhood leukemia.)
But let me say this publicly and loudly: some parents really do suck. No question. I'm not naive, nor am I simply philosophizing:
I was a foster parent. I've taken care of an 18 month old with a cast from hip to toe due to a spiral fracture he didn't give himself. I've shuttled a baby in and out of the back door of social services for parental visits with parents who had been raising the child in a motel crack house.
Some parents are neglectful, abusive, incompetent, or carrying on a family inheritance of mindlessness. And some of those people are raising kids with eating disorders.
But if you ask almost any child in the toughest part of recovery whether his or her parents are abusive, neglectful, over-critical - or any of the other sins of the week in ED theory - they'll tell you "yes." But that doesn't make it true.
Ask an Alzheimer's patient whether her daughter is stealing her good silver if you think it is.
A recent comment on this blog suggested that for those families unready or unwilling to step up it would be a great idea to have Maudsley Foster Families. I agree. But let's start with the benefit of the doubt for all parents.
October 2, 2007
Two friends alerted me to this interesting research: Anorexia shares addictive pathway with ecstasy
And if you have not read about this, you'll enjoy it: "Sense of Taste Different in Women with Anorexia Nervosa: Imaging Study Finds Brain Changes Associated with the Regulation of Appetite."
Walter Kaye, the head of UCSD's ED program, says people with anorexia may "have difficulty recognizing taste, or responding to the pleasure associated with food. Because this region of the brain also contributes to emotional regulation, it may be that food is aversive, rather than rewarding. "
"This lack of interoceptive awareness may contribute to other symptoms of anorexia nervosa such as distorted body image, lack of recognition of the symptoms of malnutrition and diminished motivation to change"
If you come to the NEDA conference this Friday you can ask Dr. Kaye about this - I plan to!
September 30, 2007
One parent said "naturally, I am crying." another said "I've forwarded this on to someone who needs it. And will do so again and again."
(And by the way, the answer to the question was "No.")
So the next question is: "Do Parents Feel Guilty?" and "Why?"
Parents: please send me your quotes, or audio or video clips, telling me if, and why, you feel or felt guilty about your child's eating disorder. Send me quotes from web sites, books, or clinicians that fed this feeling.
And then tell me what helped you feel better.
September 25, 2007
Earlier this year, I interviewed a number of eating disorder experts on camera. I've compiled a short video with some clips from those interviews, on the question, "Do parents cause eating disorders?"
September 24, 2007
See video here:
UCSF Changing Treatment For Anorexia (9/24)
Wherever you live, you'll love this piece!
** Post script: Checking out the web site for UCSF's program I am dismayed to read this:
That doesn't sound like the Family-Based Maudsley I'm familiar with. Too bad!
Norman says that struggles with power and independence are the primary underlying emotions driving eating disorders, in addition to pressures from peers, family members and the media. "Many teens feel like they are being held hostage by their parents — they are struggling with power and independence. So family counseling helps family members take a more appropriate stance," says Norman, founder and director ...
September 22, 2007
I don't believe that at all. The idea that a biological origin means hopelessness is wrong.
You can't just decide not to be diabetic, but you can learn to accept the illness and take the right precautions and actions to live well despite it. Same with asthma, ADHD, heart disease, depression - all these illnesses have a biological origin and behavioral components.
I believe it is the same with eating disorders. If you have this illness you cannot, for example, diet. You must recover the health you lost before diagnosis, you must learn to protect yourself from restricting/dieting in the future. You must find, with the help of clinicians who understand the disease, a level of nutrition and the body composition your body's DNA and history have designed for you. You must find outside resources to monitor and give feedback on your health. You must learn about your illness and how it works uniquely in you, and learn what qualities in yourself make you vulnerable to the illness (anxiety, depression, unhealthy environments).
That is not helpless. That is not hopeless. That is recovery.
September 20, 2007
Why I care about gene studies for mental illness:
"We've been stumbling in the dark for most of our history" of bipolar research, said gene expert Dr. Francis McMahon of NIMH. But "these kinds of studies ... will really give us the chance to reason from biological insights back to the patient."
...And not just in some far-distant future. The new gene studies, Sachs said, help give "a great potential to advance the field in our lifetimes and treat people who are living now."
September 18, 2007
Help Pass the Paul Wellstone Mental Health and Addiction Equity Act (H.R. 1424) NOW!CALL TOLL-FREE TODAY from 9am–6pm EasternCall House Speaker Nancy Pelosi at 877.978.9996
The Eating Disorders Coalition does a good job letting us know how to help and when to do it.
I just made the call, I hope you do, too!
September 17, 2007
This is usually seen as just more proof of the person's "desire to be thin." I have always found that condescending implication of "vanity" an insult to sufferers. It says more about the rest of us and our unhealthy attitudes about appearance than it does about anorexia.
Compulsive exercise is clearly a biologically driven compulsion. It isn't a "want" but a "need."
One explanation is evolutionary: if someone in your tribe reacts to famine by running further and faster to get food, those genes are more likely to survive.
One mechanism for the phenomenon: The impact of hyperactivity and leptin on recovery from anorexia nervosa.
And this: more on the intriguing leptin connection.
September 15, 2007
In the case of an eating disorder, there is no time to waste.
Even the American Psychological Association acknowledges that too many clinicians practice "psychoquackery," and it may hurt you: "The profession hasn't shown much interest in the problem of treatments that can be harmful,"
No one wants to talk about this. The mantra is: get professional help. My mantra is: get the right professional help. Interview as many people as you can on the phone before making appointments. Learn the vocabulary and controversies of the eating disorder world and be ready to speak up and ask questions. Trust your bravest parental instincts.
The time and thought you invest early on will be repaid many times later. You deserve to feel good about the care your child is in. Your child deserves the best care you can find.
September 14, 2007
What we don't know is how to make sure sufferers get these things. Even when family is willing to take on the job, and clinical services are available, the patient is often ambivalent, denies a need for care, distrusts loved ones, or cannot follow through long enough to truly recover.
Schizophrenia.com has an excellent breakdown of the options for "Assisted Treatment" for mental illness. I think it is time for us in the eating disorder world to consider how to use these tools when needed:
- Out-patient Commitment
- Conditional Release
- Representative Payee
- Benevolent coercion/Court-ordered treatment
- Assertive Case Management
- Treatment programs in residential facilities
- Psychiatric Advance Directives
September 12, 2007
The American Psychological Association's "Help" page says this:
"Certain psychological factors predispose people to developing eating disorders. Dysfunctional families or relationships are one factor."
But it won't say that for long. Because Chris contacted the authors listed on the page. Two said they don't remember writing it and don't know why their name is on it. One said she believed it but had no evidence aside from clinical experience to support the statement.
Chris contacted NEDA, who contacted APA. AND THEY ARE CHANGING THE PAGE BY THE END OF THIS MONTH.
This is the kind of kick-a no-nonsense activism we need more of out there. I applaud Chris and everyone else out there trying to dislodge these myths and dangerous, antiquated ideas. Now, who is up for tackling the About.com page on parents and eating disorders?
September 11, 2007
In The Know: Should We Be Shaming Obese Children More?
September 10, 2007
1) Full nutrition and an end to purging behaviors at home.
2) The same, at a hospital or residential care facility.
There is no third choice. Letting someone remain at home while they restrict or purge is not okay. Our homes must be a safe place to be healthy, period.
What number are you choosing for your loved one?
September 8, 2007
Usually, the details end up being mostly true. Except the writer is the child, pretending to be their own mom.
I used to be shocked at how popular my site for parents is to sufferers. You would think they would have little interest in a philosophy of making people eat and taking choices away from the sufferer.
But really, it makes sense. Sufferers are starving and obsessed with food as a result. They want someone to save them, and they want to eat. So what could be more attractive than a bunch of parents working so hard to support and feed and save their children? (Aside from the Food Channel)
The irony is, many of these young people make terrific mothers on paper. They are fiercely loving and very engaged. They know food, and they know what patients need. They show terrific insight into the dynamics of love and fear and control. The only thing they don't know is how to stop pretending to be their own mothers and let their real parents take over the job.
Trust your real mom and dad. Just for a moment, long enough to get it all out. They want to help. This is the bravest, most loving, most motherly thing you can do.