January 31, 2009

"the same service as those with suspected cancer"

It should not take an unnecessary death to change health policy, but it often does.

A victim should not have to be brilliant, beautiful, talented and score "four straight As" to move the public to change.

It should not take parents cruelly and unfairly left with a "burden of guilt" to move society to sympathy.

But this is exactly the level of urgency and we should hope for: "People with suspected eating disorders will get the same service as those with suspected cancer."

January 30, 2009

"hope that is real"

My friend, Lydia, one of the Around the Dinner Table moderators, said something yesterday that exemplifies the forum (and her): "Sending hope that is real."

Hope is necessary, but it isn't enough. Not with this illness. Hope and optimism without good information and leads on good treatment and examples and people who will be honest with you when you're heading down a dark road - hope is just palliative.

"Hope that is real" is what I needed back in 2002 and struggled to find. We had no peer support, our clinical supports were willing but just reading what we gave them, our extended family was bewildered - all we had were some Internet printouts and a lack of other options. No local support groups. We didn't know any other family struggling with the same thing. The only website with a parent population asked my husband and I to leave because we called eating disorders a biological illness and didn't blame ourselves enough.

I imagined a place where parents were strong and wise but also able to say difficult truths. I hoped for a place parents could do what they do best: fight for their kids. I imagined something that Lydia put a name to: real hope.

January 29, 2009

Coming out

I have raccoon eyes. You know when you wear mascara and it drifts south?

Since 2004, when my book came out, I've been on a rampage. I've forced myself on countless interviewers, spoken in more cities than I can count. I've done lots of radio interviews and harangued Newsweek and 20/20 and the Wall Street Journal and countless parents and clinicians and journalists and curious people about our family's experience.

But until this week I have not talked about our experience with bad treatment and the new science here in my own community.

I just got back from an invitation to present on eating disorders and FEAST at a local mental health organization. The board was interested and asked great questions and they thanked our family. They thanked our family. After seven years of resenting and silence and talking to anyone but them... they thanked our family.

I should buy better mascara.

January 26, 2009

The faces in Facebook

I'm a new Facebook user. It is a fascinating social network - an architecture built of and displaying one's own interests and contacts. I've reconnected with high school classmates and summer camp buddies. I'm getting to know even good friends better.

Then, as so often in life, a trio of related things arrived together - right after I read Grey Thinking's post on "the dark side of inpatient stays" and also right after another friend on Facebook posted a strong plea to eating disorder patients in her circle to stop posting "sick photos," I received this:

"There are photos all over (Facebook) of patients, both inpatient and (day) patients, some seemed to be posing voluntarily ... some were part of the scene and apparently involuntary subjects...

I wondered also if parents knew just how much of a status symbol NG tubes/any feeding tube is, especially among the younger girls ... and especially within the (clinic) culture. I have read on FEAST about the possibility of being tubed/hospitalized as a deterrent to continued ED behavior ... or motivation to work with the family. But so many of these girls seem to *want* a feeding tube ... a symbol of identity, proof to degree of illness, way to defer responsibility for any weight gain on the tube, way to avoid "getting used to eating" so that when the tube is pulled, there isn't an oral intake habit = easier return to restrictive patterns.

...I find many of the photos seem to underscore an atmosphere of summer camp ... "hat day," "PJ day," zip lines and horseback riding while still sporting an NG tube, preening for the camera as if it were a wardrobe accessory of great pride...

Just my two-cents and wonder what your thoughts are on these issues ..."

My thoughts: sadness. My enjoyment of Facebook: tarnished.

January 25, 2009

On moving on

Throughout our children's recoveries we work toward the day we are "normal" again. Most families find that normal a different one than the one they left. Our family's new normal was a better one. Less stressed, humbler, and frequently moved to tears by the breathtaking normal of having well children and living outside the crisis zone.

There have always been brave parents who became activists after outcomes are not good - chronic disability or death. Other activists seek answers after ambiguous results: less than full recovery, lingering mental health issues, and quite often: eating disorder recovery but at the cost of family estrangement.

The history of poor outcomes and blaming and marginalizing parents during treatment has led to generations of chastised, ashamed, alienated parents. It is my hope that the message of parent advocacy will change as more of us with happier outcomes step forward. What I hear from the researchers and top clinicians is that a strong parent movement is the key to increased research funding, media attention, legislation, and society's view of the illness.

I applaud parents who move on - stop visiting the online forum, stop talking all the time about eating disorders. This is a healthy and natural process. But if every parent who is helped by what eating disorder advocates are doing, or wishes they were helped, hung back a little while to aid others before they move on - a lot of good can be done. A lot of good IS being done.

I'm so happy to have a large circle of parent correspondents, volunteers, and donors to help FEAST get started. We are hundreds of families hoping to help others. I am so grateful to be part of this community of fierce, wise, loving parents!

January 23, 2009

"I love you and thanks"

We all have our heroes. Mine are parents facing the task of pulling a loved one from the clutches of an eating disorder.

If you have never done it, or seen it up close, it is probably impossible to fathom how difficult and confounding and frightening it is. This is not a challenge any family expects. And yet, mothers and fathers do:

she's been crying for three days straight

And perhaps the most moving aspect of this is that a child who literally is being spoonfed and fighting treatment with superhuman strength and hatefulness can summon the bravery to send a quick message on to her parents past that horrific anger and fear:

"at one point she cuddled up to him and said I love you and thanks"

January 22, 2009

Kissing ED's ...elbow

A really great conversation going on at Around The Dinner Table forum: D was told by peers she isn't skinny.

It points to something that isn't obvious to parents until we are well down the rabbit-hole: that as cruel as other children can be it is really more about how cruel a patient's mind is when ill. As you read that thread, don't stop before you get to the explanation of how the patient (her ED) got the other child to say this.

Parents get into this with their ill kids all the time, mistaking these expressions of anxiety for answerable questions. There is no more chance of appeasing these questions than there is of kissing your elbow. And you look about as dignified and authoritative when you try!

January 21, 2009

Food is medicine

The F.E.A.S.T. Parent Council recently added to our basic principles:

"Food is medicine: all treatment should include urgent and ongoing nutritional rehabilitation."

It is time, in my opinion, for us to end the practice of psychotherapy without immediate and simultaneous brain restoration. Period.

It is time for parents to refuse to sit back and watch a loved one continue to lose weight or fail to immediately begin restoring weight.

January 20, 2009

I take it back, S.K.!

When I was a kid, probably 4th or 5th grade, S.K. called me a half-breed as he passed me walking home from Crocker Farm elementary school. I knew what I had to do. I turned to my best friend Paul B. for his sturdy metal Batman lunchbox, overtook the offender, swung with terrified but righteous indignation, and fled to cower in the basement until my mother got home.

S.K. got stitches and a crush on me. Neighborhood T.V. tag was never the same.

I'm sorry about the scar, S.K. Had it happened in 2009 I would be labelled a violent offender and referred for anger management class. And had you said it today I could just say "Thank you!"

How could I have known that being an American "mulatto" born in 1961 would someday be a presidential quality?

January 19, 2009

Parentectomy

"Parentectomy" - the separation of patients from their families - has long been practiced in eating disorder treatment. The reasons behind this thinking were, it is now clear, flawed. I believe generations of patients have been disabled or killed by these policies.

I am very proud to say that F.E.A.S.T.'s Parent Council, with assistance from our Advisory Panel, has published a Policy Statement:
"F.E.A.S.T. Protests Continued Use of "Parentectomy" in Eating Disorder Treatment"

Together, let us usher the era of parentectomy to the history books.

January 18, 2009

Getting back up

I'm not usually much for motivational speakers and sentimental "keep trying" sorts of speeches - but this, well, it defies description:

Are You Going to Finish Strong? - Video

**Thank you MB, for the link!

January 17, 2009

Dad? Your turn -

Another reminder of an opportunity for parents to get a word in on what it is like to be the parent seeking care:

Are you the parent of a child who has received inpatient treatment for Anorexia Nervosa?

If so, we'd like to talk to you about your experience. As research psychologists, we are interested in how a child's eating disorder affects the parents and family – including coping reactions, relationships, and marital satisfaction. Few medical or psychological resources are available to support parents who may face their own challenges with respect to the diagnosis of and treatment for their child's Anorexia. We hope our research findings will contribute to enhanced understanding of how a child's illness affects parents and family. If your child, age 11-21, is currently receiving inpatient treatment or has received inpatient treatment within the past 18 months for Anorexia Nervosa, we invite you to participate in this important study. For this phase of the study, we are currently seeking to interview fathers.

Participation will include:
*A confidential and supportive phone interview, scheduled at your convenience, with a trained psychology doctoral student
*Access to our findings, at the end of our study
*Helping other parents in the same situation, by sharing your story with us

Please contact Dr. Merle Keitel at mkeitel@fordham.edu or (212) 636-6468 for information.

NOTE: This research study has received IRB (Institutional Review Board) approval from Fordham University and Princeton HealthCare System and researchers will adhere to the American Psychological Association's Code of Ethics. Primary investigators for this study are Merle A. Keitel, Ph.D., Professor of Counseling Psychology, Fordham University, and Melinda Parisi, Ph.D., Program Director, Eating Disorders Program, University Medical Center at Princeton.

January 16, 2009

Al-Anon

Lee Wolfe Blum, a blogger over at Gurze, wrote a post on You, Me, and ED that referred to the Al-Anon mantra:

"You didn't cause it.
You can't cure it.
You can't control it."

Although well-meaning, in practice parents often find that that type of advice both distancing and disempowering. Although in a more recent post Blum explains her reasoning, and what parents CAN do, it is my observation that those second two phrases leave parents feeling alienated and frightened.

They take from this that they should stay out of it, that the behaviors and thoughts of the illness are not their business, and that the patient is in charge. There is an implication that there IS no real cure for this, and that one is being overcontrolling and overinvolved to even try. These sentiments have been used for a long time to keep parents at arm's length, to keep us out of the treatment team, and as a chiding companion to the phrase "Don't be the Food Police."

The evidence is quite clear that parents DO need to be the Food Police, we DO need to make these behaviors our business, and we do need to be as much a part of the treatment team as the clinicians are. To draw out the addiction model, a family would expect to have a drug-free home, and would not condone alcohol use with a child or recovering alcoholic.

This may be a matter of emphasis over content, but if so, I choose to emphasize: You did not cause this, you are a necessary part of the cure for this, and your loved one needs you to take control until he or she can.

January 15, 2009

Staring at my own brain

I hope you don't mind if I tell you I had a bout of depression a few weeks ago.

It came on very suddenly, over the period of an hour - though the days before I recall some unusual anxiety and a sense of hopelessness. "It" lasted about 36 hours, and then I woke up feeling pretty much normal - though a bit emotionally tender.

While it was happening, as you might expect of me, I took notes. I watched as quite normal thoughts would drift into negative and hopeless conclusions. I found certain benign things (notably: yellow cars) intolerable. Normal interactions with my husband and kids took this plodding and excruciating patience. The only time I left the house was almost comically unsuccessful. I was easily hurt. I could think of only one thing at a time. Just sitting there was work. My brain was very slow, and I cried a LOT.

I knew, even as I was "in" it, what it was. I had a depression as a teen, and though this felt entirely different, the symptoms were obvious.

I knew, at the time, what to do: I told my family, I went to bed, I turned off the computer, I put aside all responsibilities as if it was a stomach bug and not this bizarre brain problem. My family treated it much like a flu: brought me tea and sat close and listened and took care of me. My best friend took my crying calls which turned into laughing about crying calls. No one was condescending or tried to jolly me out of it. No one got angry at me. They were wonderful.

I did not email or blog. The phone kept ringing because my friends thought I'd broken both hands and been kidnapped.

I knew that if it continued that I would go to the doctor and call a therapist - I had a plan.

36 hours and only a taste of living in that brain state indefinitely. Even with full knowledge that what I was experiencing was a brain phenomenon, and all the resources at my disposal, how long until that state became me, and I burned out resource after resource there to help me?

I'm feeling quite well now (though slightly superstitious that talking about it might shake it awake again). I am mindful of the luxury of a more fluid and peaceful brain. I am calling on all the tools I know to keep my mental health strong and flexible - and adding some new ones.

And I remain fascinated, on a detached and intellectual level, at the behavior of my own brain.

January 14, 2009

Study in New York looking for child and adolescents with anorexia nervosa

Mount Sinai Eating Disorders Program Research Studies

Does your child or adolescent have symptoms of anorexia nervosa?

The Mount Sinai Eating and Weight Disorders Program is offering study treatment as part of a federally funded study (Principal Investigator: Katharine Loeb, PhD) for children and adolescents with symptoms of anorexia nervosa. If your child is 10-17 years old, is medically stable, and is developing signs and symptoms of an eating disorder, s/he may be eligible to participate. The study is approved by the Mount Sinai School of Medicine Institutional Board (Protocol 04-0978, approved through 8/31/09). For more information, please contact Lauren Alfano at 212-659-8724.

January 11, 2009

How to find the real FBT Maudsley clinicians

In 2002, my husband and I stumbled on a little-known idea in eating disorder treatment: the "Maudsley Approach." Our daughter was gravely ill with anorexia at the time, and the only treatment we could find locally was the very opposite of the principles of Maudsley. We were excited, but could not find anyone who offered this family-based, home-centered treatment, and could only find one media report describing it. We contacted the two clinics in the US where it was offered (Stanford and the University of Chicago) but had to create our own team at home in Virginia from scratch to help us use the principles of the approach.

After our daughter recovered, I was frustrated that families did not have an opportunity to know about, not to mention access, Maudsley (also called Family-Based Treatment). There were no websites devoted to it, no professional organizations training in it, and the rest of the ED world remained skeptical about it.

So, I wrote a book about it: check. Went out and talked about it in speeches and the media: check. Gathered and nurtured a community of parents who are well-informed about it: check. Helped start a website with some other parents so there was a place on the Internet devoted to the topic: check.

And things have changed: Maudsley is now established as THE evidence-based treatment for adolescent anorexia nervosa and is rapidly being adopted in the treatment of bulimia and for adult patients. Although it is still not well-known, there is enough buzz about it for there to be blowback from skeptics.

But this is the most exciting news in FBT/ Maudsley history, in my opinion:
Train2Treat4Ed.com

Drs. Lock and le Grange, who literally "wrote the book" on FBT Maudsley have moved forward on a project they've had in the works for some time: a training institute for evidence-based treatment. Finally, a place for progressive clinicians to be trained and mentored in providing effective treatment. An authoritative organization we advocates can tell parents to reference when they say: "are you trained in Maudsley?" A better way to distinguish those who say they "do Maudsley" and those who have had quantifiable training and experience with the approach from those who are just employing a buzzword for marketing purposes.

I am overjoyed, relieved, and optimistic. I look forward to a time in the near future when families are routinely offered family-based nutrition-first EFFECTIVE treatment early, and families are spared needless suffering as they do the difficult work of helping their precious children recover and thrive.

Anger and fear

I'm often impressed how parents know by intuition and experience what research later confirms: Emotional perception in eating disorders.

So many families, ours included, learned to diffuse the escalation of fear/anger/fear between ourselves and our kids by adopting (faking, if necessary) an impassive and unruffled face to ED.

I doubt any parent gets through the experience of supporting a loved one through eating disorder recovery without getting mad. What we're really angry about is how the illness steals our child's intellect and abuses his/her emotions and isolates them in a maze of self-destruction. We're angry at our inability to reach them, and often at the difficulty of finding clinical support. It is more about fear than anything.

Ideally, we learn early on about "externalizing" the illness so we see the thoughts and behaviors as "ED" and not as our child - this diffuses our anger and lets us hate the illness while still loving our child. But anger slips through, driven by fear, and we raise our voice or get sullen or stomp away. We make threats we're terrified to make good on. We strike out at our spouses for being more or less angry at ED than we are.

What eventually becomes clear to many families, and certainly to my husband and I, was that our daughter perceived any negative emotion on our part as anger, and it frightened her. Her fear drove our fear. I've often heard people during their illness speak of feeling hated or looked down on by seemingly benign and caring gestures by families - even the phrase "I'm worried about you" is taken in as a criticism and as anger.

ED puts patients in a perfect box: it blinds the person to declining health, re-frames the concern of others as hostility, and in a perfect coup transforms the patient's own fears into expressions of anger toward those trying to help.

Mothers and fathers are the perfect people to end this cycle, to stand in the stream of terror and anger and return nothing but Buddha-like calm. It works, and often we are more amazed than anyone!

January 10, 2009

January 9, 2009

Concordance

Okay, this is impossibly self-involved, but I just happened to check out Amazon's concordance stats on my book. (And yes, any author who tells you they don't check their Amazon ratings every once in a while is lying.)


I didn't know "ing" was a word. I'm glad to see "eating" and "Olympia" get top billing. Surprised calories didn't make the top 100. Glad to see more verbs than adjectives, but sorry to see how much I use "should." Our family therapist wanted me to lose that word from my vocabulary, so I hope he doesn't see that!

January 8, 2009

F.E.A.S.T. Celebrates NEDAW



I'm holding an informational event in my own community this year. If you live in Virginia, please consider yourself invited!

F.E.A.S.T. Celebrates NEDAW

January 7, 2009

Co-parenting with strangers

It is a rude shock for most of us: co-parenting with strangers.

But that is what it is like to seek eating disorder care for a loved one in our care: it's an arranged marriage - brokered by insurance and National Health systems and the Yellow Pages and marketing budgets and a chance referral by a friend of a friend.

This relationship that could be the difference between life and death: it is rarely a star-crossed love match across a crowded room of suitors. There isn't even time for courtship. Dating around... frowned upon.

But make no mistake: as soon as you bring your child to a professional you are entering a relationship and changing your parenting relationship with your child and the illness. I hear so often from parents disappointed with the treatment their children received, or upset because the child came home and "just went back to her illness." And it is too late to say:

Choose wisely. Your loved one is depending on you. There are many skilled, successful, life-saving clinicians out there - but it is up to you to find them and work with them - and there is no visible halo to distinguish them from anyone else. No stamp of approval or secret handshake. No letters after the name we can all point to as the Gold Standard.


But the clinicians you choose and how you manage the relationship can also be the difference between full recovery and lifelong disability or worse. You can't give them your kid and your credit card and expect them to be returned fixed.

Do you have choices? Not always. But we often have more options than we think: and no matter what, we can always choose OUR side of the relationship.