I need your advice and wisdom

As you no doubt know if you're reading this, I've let this blog languish for a long time now. Too long. I won't go into the reasons for that lapse here, but I do beg your forgiveness. And so it's fitting that for my comeback post, I'm asking you for advice.

The advice isn't for me but rather is for a woman I'll call Mary, who's in her mid-30s and has been ill with anorexia since she was a teenager. She's been through in-patient, residential, intensive outpatient, outpatient treatment--you name it, she's been through it. And she is still sick.

Mary is smart and motivated. She understands what she has to do to recover: she has to eat. As for everyone with anorexia, eating is terrifying for her. Those of us who have re-fed a child or teen or young adult with anorexia know how very hard it is for someone with the illness to eat, and how much they need someone to stand with them and stand up to the eating disorder. Mary wants that very badly. She doesn't want to die. She wants to recover and knows, at this point, that she can't do it eating on her own.

Mary's dilemma has made me think long and hard about the need for a different level of care. I think one of the reasons FBT (the Maudsley approach) is successful most of the time is because parents care about their children in a different way than, say, administrators or caregivers at a residential facility care about their patients. I've come to believe that that love is part of the cure, maybe because it motivates parents to hang on through the toughest moments, or maybe because it's part of what breaks through the cognitive distortions of the illness. It doesn't matter why, really.

So I wonder: What if we created something like halfway houses for refeeding people with anorexia? Not residential facilities, with their (perhaps necessary) rules and restrictions and inevitably institutional feeling. More like a small house, with 3 or 4 people living there and round-the-clock nurses who developed real relationships with their patients. Who really cared about them. Who were capable of empathy and affection and, yes, maybe even love sometimes. There wouldn't be hours of group and individual therapy, because those things really don't help people until they're more or less weight-restored, so the cost could be much lower than the one to two thousand dollars a day cost of residential care.

What I'm really talking about is a kind of foster re-feeding home. I've given a lot of thought to inviting Mary to my home and re-feeding her, but there are some logistical challenges involved that I'm not sure are solvable.

So I put it to you: Do any of you know of resources for someone like Mary? Resources I'm perhaps not aware of? And what do you think of the idea of creating refeeding homes for people with anorexia?

I'm eager to hear from you. So is Mary.

Family-based Online Bulimia Study

Hi y'all,

Please pass the word about the study below. I'm thinking it could be wonderful treatment for the right families. University of Chicago is at the forefront of research on ED treatment, and I trust their protocols completely.

************************************

The University of Chicago is conducting a research study designed to examine the efficacy of an Internet-based program for parents with adolescent children who show early signs of bulimia nervosa. We are seeking families who have an adolescent (ages 12-17) who engages in binge eating (large amounts of food in a short period of time) and/or compensatory purging (e.g., vomiting). Participating families will use an Internet-based program to address their adolescent’s eating disorder symptoms.

To be eligible:
* Families with an adolescent child (ages 12-17)
* Adolescent demonstrates eating disorder symptoms

For information call:
Colleen Stiles-Shields at 773-834-5677 and mention your interest in the Family Internet-based Early Bulimia Nervosa Study

or e-mail Jocelyn Lebow:
jlebow@yoda.bsd.uchicago.edu


or, to learn more, or to register online, visit:

http://epathprogram.org

Family-based treatment in the New York Times

Great story by Roni Rabin in tomorrow's New York Times about family-based treatment for anorexia. Nice interviews with Rina Ranalli, whose daughter recovered using FBT; Dr. Daniel le Grange of the University of Chicago; and moi.

Change is coming. And it's about bloody well time.

Hope for teens with anorexia

The release last week of the long-awaited results from a five-year multi-site study confirmed what many of us already knew: family-based treatment for anorexia works. In a controlled randomized study, FBT worked better than traditional individual-based psychotherapy: More than half the patients getting FBT recovered, compared with less than a quarter of those getting the other treatment. And far fewer in the FBT cohort relapsed.

This is great news. There's more work to be done, of course; a 50 percent recovery rate is not acceptable. But it's so much better than the usual statistics: people with anorexia stay sick for five to seven years, and only about a third recover.

Read more here on my Psychology Today blog.

Going through hell? Keep going

That's one of my favorite quotes, from Winston Churchill, as it happens, and the title of my newest post over at Psychology Today. See you over there.

Interview at CarolineLeavittville

Thanks to writer, reviewer, and blogger extraordinaire Caroline Leavitt for posting a thoughtful, thought-provoking interview about Brave Girl Eating on her blog today. I love it when interviewers really get the book--and Caroline did.

Reviewers wanted

I have a favor to ask, dear readers.

If you've already read Brave Girl Eating: A Family's Struggle with Anorexia, would you write an Amazon review of the book? It doesn't have to be long or complex--a two-sentence comment can work just fine.

People actually read those reviews, and make decisions about what to buy from them. I'm doing everything I can to get the word out--not just about the book but about family-based treatment as an option for families.

A great big thank you to you!

Photo ©Forest Wander.

Getting her to eat

In my new blog, Brave Girl Eating, for Psychology Today, I wrote about how we got our daughter to eat when she was in the grip of anorexia. Read it here. I hope it's helpful to those of you who are struggling to help a child or teen with anorexia.

The Diane Rehm Show

Thanks to Lynn Grefe, CEO of the National Eating Disorders Association, and Ovidio Bermudez, M.D., for taking part in the Diane Rehm Show yesterday with me. The subject was eating disorders, and we talked a lot about family-based treatment (the Maudsley approach) as well as Brave Girl Eating. It was an inspiring conversation and I am grateful to all who took part.

You can listen to the segment here.

Jezebel on parents and eating disorders

Jezebel writer Anna North put up a piece today based on an interview we did last week about not just my new book, Brave Girl Eating, but the whole notion of family-based treatment.

The comments, sadly, reveal some of the biases against FBT (the Maudsley approach). Take a look and leave a comment if you are so moved--I think Jezebel readers would benefit by hearing from some who have had positive experiences with FBT.

I'm off to do some deep breathing.

Looking for young adults with anorexia

Researchers at the University of Chicago, under the direction of Dr. Daniel le Grange (pictured, left), have just won an NIH grant to study family-based treatment (FBT, also known as the Maudsley approach) in young adults. If your family lives in the Chicago area, or within driving distance, you could get free treatment if you qualify for the study. Not to mention the chance to get some of the best treatment for anorexia in the country. It's a win-win!

Here are the study parameters:

This study is a good match for you if you are:
• 18 to 25 years old
• Meet diagnostic criteria for anorexia nervosa
• Are prepared to participate in assessments
• Interested in cost-free psychotherapy treatment with a family member of choice

Treatment involves up to 6 months of free individual and family therapy sessions.

For more information, please contact the Participant Coordinator at 773-834-9120 or visit University of Chicago here.

See you in . . . October?

For those of you in the D.C. area, I hope you'll join me and some very special guests at a conference on eating disorders, hosted by Maudsley Parents. This half-day get-together features two of the leading researchers in the field of eating disorders, both of whom are accessible, compelling speakers. Daniel le Grange heads up the University of Chicago's Eating Disorders Program; Walter Kaye directs the University of CalIfornia-San Diego's program.

Dr. le Grange will discuss family-based treatment (the Maudsley approach) for both anorexia and bulimia. Dr. Kaye will give us insights into the neurobiology of eating disorders. And I'll share my family's story and offer parents specific strategies and tips for helping a child through an eating disorder.

You can find more information and sign up for the conference here. (If you sign up before September 14, the cost is only $25 per person.) I hope to see you there!

Of parents, health, and eating

This semester I teach mainly seniors, and today I was asked by some folks in another part of the university to administer a health survey to my classes, to gauge the effectiveness of some "healthy living" efforts they've been working on for the last few years. I couldn't help noticing, as I collected the surveys, one line in particular. It was one of a series of questions about where these 22-year-olds get their health information. There were many choices (the internet, magazines, newspapers, classes, health initiatives on campus, etc.), and many of the students indicated that they didn't get health info from very many sources. The one source that almost unfailingly scored high: their parents.

That's right. Their parents. These young women (and a few men) have been living away from home for the last four years. They've been independent. They've traveled to Europe, many of them; they're close to starting their own adult lives. And yet they trust their parents more than almost any other source of health information.

I must admit that tears came to my eyes as I looked at survey after survey (just that one line, honest!).

This was especially moving and poignant given what I'd been reading earlier in the day: A book called Psychosomatic Families by Salvatore Minuchin, one of the founders of family systems therapy. Minuchin's work with families is often cited as one of the inspirations for family-based treatment of anorexia and bulimia. Until Minuchin's work, patients were routinely separated from their parents and treated (usually ineffectively) individually. Minuchin was one of the first to see patients as part of a bigger family system.

Unfortunately, his view of families was anything but positive. The title says it all: Instead of psychosomatic patients, he believed in psychosomatic families--families that through enmeshment, conflict avoidance, triangulation, and other unlovely psychodynamics created children who expressed their emotions through illness. Interestingly, Minuchin writes that he developed the idea of psychosomatic families after treating diabetic children who managed their blood sugar fine in the hospital but who had crisis after crisis when they were at home. His theory was that emotional stress at home was affecting the kids' blood sugar levels.

It's an interesting theory, and I think there's some merit in it, but not for the reasons Minuchin believed. As this rather technical article discusses, stress early in life can lead to permanent changes in physiology--in this case, rats' guts became more permeable, leading to more gastrointestinal symptoms. The idea is that some of us (rats or humans) may be more genetically predisposed to such stress mediation than others. Genes load the gun, environment pull the trigger.

For Minuchin, though, it was all environment. He blames parents for pretty much everything. For those of us who have parented children with eating disorders, his book is painful reading. For instance, Minuchin describes a family at the table with their anorexic daughter. Each parent tries to cajole, threaten, and inspire the child to eat. The child does not eat. Minuchin deconstructs the parents' behaviors as "enmeshment."

He was way off base on that one. By the time a child is in that kind of trouble with anorexia, of course parents are going to be trying to get her to eat. And of course they're going to be unsuccessful, unless they're empowered or supported by the treatment and/or professionals. Sitting in a room with a one-way mirror, pleading with their child to eat, most parents will look enmeshed and ineffectual.

Which is why I was so moved to see those answers on the surveys today. One of the fundamental principles of the Maudsley approach is that families love their children and are best positioned to support and help them through one of the most devastating experiences of their lives. Critics of Maudsley say the treatment fosters an inappropriate "enmeshment" (that word again) between parents and children. Proponents say Maudsley leverages the asset that already exists: the strong and loving relationship between parent and child.

Not all families are healthy. Not all families are functional. Not all parents love their children. But most do. And if those surveys are correct, for many adolescents and young people, parents are still an important part of the picture. And not in the way Minuchin imagined.

Why I don't recommend Rogers Memorial Hospital: Part II

Last year I wrote about the cognitive dissonance between the marketing materials produced by Rogers Memorial Hospital, in Oconomowoc, Wisconsin, and its actual therapeutic programs and practices.

That post produced a letter from Rogers' CEO himself, complaining about my "airing my grievances in a public forum" rather than talking directly to him about them.

Dude, that's what blogging's all about. Besides, I can imagine how open he would have been to my criticisms. Yeah, right.

This time around, I'm not just writing about presentation. I'm writing about practice, therapeutic practice as it's being executed at Rogers. And it stinks.

It seems that Rogers has changed its practices around the use of feeding tubes for anorexic patients. In the past, feeding tubes were considered something of a measure of last resort, sometimes necessary to save a life but something to be avoided when possible.

Not anymore. And not only that: feeding tubes are being used to keep patients at Rogers when parents want to bring them home.

Case in point: A family whom I'll call the Smiths, whose young adolescent daughter was admitted to Rogers a few weeks ago. The family was told the girl must have a tube, and although they weren't in favor, the tube was administered. Fast forward 10 days or so. Rogers is telling the family the girl has made "little progress" and urgently needs admitting to its 30-day residential program. Family can get no information on why so little progress has been made, even with the tube. Family has been researching, and has decided they want to use family-based treatment, the Maudsley approach, to help their daughter. Family tells Rogers of their intentions and asks when daughter may be safely transported home.

Next thing family knows, their local county department of child protection services is threatening to remove their daughter from their custody if they take her home. Rogers continues to insist that daughter cannot be moved so long as she's on the tube. Family says most girls with their daughter are also on feeding tubes, which constitutes a large shift in treatment protocols at Rogers.

The girl is eating. She's terrified. She wants to go home. Her family wants to bring her home for FBT. Rogers, which claims that it incorporates some FBT in its therapeutic protocols, is playing dumb and insisting that FBT would constitute child abuse and that the girl cannot safely be sent home.

The therapists at Rogers are (or should be) familiar with the studies on FBT, which show that it is very successful for adolescents under 18 who have been sick for less than three years. (It's been successful for others, too, but there are no studies yet on those populations.)

Their actions in this case and others are deeply disingenuous. Feeding tubes are a necessary evil at times. But families should be the first line of treatment and support for adolescents--especially when the family is committed to the task of helping their child recover.

Shame on Rogers.

Kitty

This month we celebrated Kitty's birthday. She was bummed because she got a lot of homework on the actual day, but she handled it well. We had one of her favorite dinners--takeout Indian, because our kitchen is in the midst of a renovation project and we have no kitchen sink, which makes washing up difficult. We had ice cream cake for dessert, by her request, and opened presents.

I couldn't help thinking back to her birthday two years ago, when we were in the midst of re-feeding. And that led me to thinking about where we would be today if we hadn't done what we did, if we'd followed a more conventional treatment plan for Kitty's anorexia. Would she be happy and healthy and as fully recovered as she is now? Would she be in a hospital or residential care program somewhere? Would she be at home, struggling and tormented as she was when she was ill? What would her life be like? What would our family's lives be like?

I looked at her younger sister, Lulu, her face shining with vicarious pleasure at the celebration (and also digging that cake). I looked at my husband, saw the lines at his eyes, the kind of lines that come from both laughing and crying. I looked into the mirrror and saw my own gray hairs, the new lines etched in my face.

And I smiled. I smiled into the mirror, and then I went back into the dining room and smiled at my family. At my beloved, imperfect family. We make lots of mistakes. We mess up. We say the wrong things. But at the end of the day we love one another. We fight for one another. We are stubborn and stupid and persistent as hell.

And our daughter is well.

Happy birthday, Kitty.

Walt Kaye, M.D., believes in families

Dr. Kaye, a professor of psychiatry and director of the Eating Disorders Program at University of California-San Diego, is leading a team in one of the largest studies on eating disorders ever done. The study will include seven sites around the world and will compare two kinds of family therapy to explore the question of which kind of family therapy is best for which families.

Note to eating disorders therapists and programs: The question in this study isn't whether families should be part of e.d. recovery. It's how.

Patients will be assigned to one of two treatment types: systemic family therapy, which looks to improve relationships within the family as a means to recovery, and family-based treatment, also known as the Maudsley approach, which empowers the family to help the child recover.

One of the biggest perceived obstacles to Maudsley treatment is the notion that families have to be "perfect" in order to implement it. Well, that and the traditional notion that families cause eating disorders in the first place, and so cannot possibly be part of the solution.

The trouble is, traditional treatments stink. They condemn sufferers to years of semi-starvation, partial recovery, and inevitable relapse. So far, the Maudsley approach is the single most effective treatment for teens, with five-year recovery rates between 80 and 90 percent.

If a better treatment came along, I'd be the first to do the happy dance. What I can't stand is people who shoot down the notion of families being involved in treatment on general principle, or because it's always been done that way, or because they've always done it differently and can't make the leap to a new paradigm.

Children deserve the best treatment out there. Research shows that if someone with anorexia is ill for less than three years and then recovers, her chances of a lifetime free of this devastating illness are excellent. But those who've been chronically ill for 5 years, 10 years, 15 years, are much less likely to ever really recover.

And that's simply wrong. Especially when there are tools that can help--like the family.

Anyone who's interested in being part of the UC-San Diego trial can call 858-366-2525 or e-mail edresearch@ucsd.edu.

Please read this first-hand account

sent to me by a mom, describing her daughter's recent experiences in an upscale residential facility for eating disorders:

". . . If my daughter cries in the facility, she is restrained in a punishment chair. If a girl regurgitates food at the table, she has to eat it again. The nurses tell my daughter to try to swallow her vomit at the table so she won't get the punishment chair. Over the past four days, my daughter's typical meal has consisted of two veggie burgers on buttered rolls, three cups (!!!) of canned vegetables, two cups of milk, two bananas, six TBS of peanut butter, and a granola bar, all of which must be consumed within 20 minutes. All food is served stone cold because the pediatric unit has no kitchen. We are allowed one visit per day, during which she cries to come home. . . ."

This is why I'm such a strong believer in family-based treatment (the Maudsley approach). Those of us who have been through the nightmare of anorexia know that you have to be tougher than the eating disorder to help your child survive. You have to allow no loopholes for the disease to continue its insidious mind-twisting.

But you do not have to punish the child. Someone with anorexia is already suffering torments beyond what we can truly imagine. The very concept of a punishment chair makes me feel ill. Eating stone-cold food? Being punished for crying? Who wouldn't cry, trapped in the hell of anorexia? Serving massive amounts of fruits and vegetables during re-feeding? You need the smallest volume possible of food during re-feeding, partly because the digestive system can't handle so much volume and partly because fat is a crucial part of the recovery process. Quality, not just quantity, is important, and the brain and body need fats and protein to begin to heal.

Imagine being ill with cancer and being punished for throwing up after each round of chemotherapy.

Treatment for an eating disorder should never look like medieval torture. There are other ways and options. Even in cases where a child requires an NG tube, treatment can be done with love and kindness and not punitively.

One hospital that gets it

I'm deeply encouraged by a new study from the Children's Hospital at Westmead, in Sydney, Australia, where in 2002 clinicians set out to reduce the rate of readmissions and relapses they were seeing on the eating disorders ward. They began offering the Maudsley method for families with children and teens being discharged, and saw their readmission rates drop significantly.

They also identified four "practice challenges," aspects of treatment to pay attention, and I think three of them are worth repeating here because they get to the core of the challenges of family-based treatment.

1. Parallel process, or getting families and treatment providers on the same page. "Failure to achieve this tends to replicate the dynamic seen in a split parental team and leads to conflict, confusion and treatment failure," wrote the study's authors.

2. The therapeutic relationship with the family. "The therapists connection with the parents plays a significant role in helping them remain focused and energized for the task at hand. . . . The relationship for single parents with the therapist and supporting team is particularly significant, taking on an important role of emotional support that parallels the support that parents would give each other in an intact family."

3. Difficulty in predicting which families will succeed. "Clinicians need to maintain optimism and faith in a family's capacity, regardless of how they present."

Parents, if you're looking for treatment for your child, I hope you'll keep these important lessons in mind. Don't be afraid to bring them up with your treatment team.

I just don't get it

It is just shocking to me that so many people misperceive and fear family-based treatment.

I'm no dummy: I know even FBT is no panacea. It won't cure everyone. But it cures a damn sight more folks than anything else we've got. And a lot quicker, too.

So what's the problem? We don't advise against penicillin because some people are allergic to it, do we? We don't dismiss Prozac because hey, it doesn't work for everyone.

So why are people so dismissive of Maudsley? I'm talking about people who haven't worked with it, who are going only by what others say about it.

Maybe it's like a generic medication--there's no big money to be made on it, so there's no incentive to fall in love with it.

But as Daniel Le Grange said to me recently, "We're not doing very well by our children." FBT helps children and adolescents, no question about it. The statistics are very good--80 to 90 percent of those treated with it are still recovered after five years.

FBT doesn't get into cause. It doesn't have an opinion, so to speak, on psychodynamic issues. It rather neatly sidesteps them, at least for phase 1 of treatment--weight restoration.

Is there anyone out there who can truly argue with the need for someone who is severely malnourished to gain weight?

I just don't get it.

6 lessons I learned at NEDA

1. There are lots and lots of well-meaning but ineffectual folks working in the eating disorders field.
2. There is lots and lots of Big Money at stake in the eating disorders field, mostly in the form of residential treatment centers.
3. There are lots and lots of politics in the eating disorders field.
4. Family-based treatment, which the scientific literature recognizes right now as the only evidence-based treatment with an 80 to 90 percent long-term success rate in adolescents, is perceived as controversial in the eating disorders field, even by some of those who profess to support and use it.
5. The most commonly heard comment about FBT at the conference: "Don't you have to be a very special family to make it work?"
6. The intensive outpatient family therapy for eating disorders program at University of California-San Diego, headed by Dr. Walter Kaye, looks absolutely wonderful.

I'm sure there are more, and I'm sure I'll be posting about them too.