Part 2 of 3 of The F.E.A.S.T. Conference, January 31 through February 1, 2014 - Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

Before starting Part 2  I again want to emphasize that I attended all the presentations and took copious notes.  I've selected those to comment on here that provided subject matter I specifically wanted to learn more about.

Looking at the subtitle of the conference -- Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders -- I decided to start with the last session of the conference first and focus on one of the messages I gleaned from a wide-ranging discussion during "A Family's Recovery Story" presented by Julia and Sonja Kranz and moderated by Sarah K. Ravin, PhD.  I acknowledge here the tremendous courage and willingness of this family, especially of Julia, to share her recovery story.  I was privileged to sit with them during a meal and to listen to more of their story - of a mother and her daughter.

The message I received and that Laura Collins Lyster-Mensh also highlighted  (Laura's was much more comprehensive) in her presentation titled "An Advocate's Vision for a Complete Spectrum of Care" jumped out at me [the following kind of thing has stood out for me often while reading a variety of works during my family member's journey] when I was  reading Walter Isaacson's outstanding biography of Steve Jobs.  Chapter Forty-One Round Three - The Twilight Struggle includes the story of Jobs' revelation of "....facing a problem that he never permitted at Apple.  His treatment was fragmented rather than integrated.  Each of his myriad maladies was being treated by different specialists -- oncologists, pain specialists, nutritionists, hepatologists, and hematologists -- but they were not being coordinated in a cohesive approach....  'One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team,' Powell [a member of his team] said."  [Steve Jobs by Walter Isaacson, Simon and Schuster, New York, NY 2011, pp. 549-550.

Julia's experience included the work of an ever-present and apparently expanding team of people at the Mayo Clinic where her mother, Sonja, is a staff Occupational Therapist.  Starting with Julia's pediatrician who followed her from birth, Julia with her mother's loving persistent advocacy, received the continuum of care that was necessary in her recovery from what her doctor observed to be the most severe case of anorexia reportedly he'd ever seen.  Julia described how her team would meet weekly to review all aspects of her illness.  The team also considered other aspects and brought others on board as needed.  Fortunately for her,  each team member had the additional option -- and used it -- of accessing her file and bringing themselves up to date on what was happening in each discipline at every step.

Julia and Sonja chose not to focus on Julia's behaviors while she was ill during their presentation but rather to discuss the high and low points of her treatment, her co-morbidity of OCD and her progress.  Ultimately, though, I was struck by the importance and presence of a rather incredible team approach and its willingness to completely involve Julia and her mother.  This is the concept of a continuum of care and Family Based Therapy, I believe, should look like for anyone in treatment with an eating disorder.

I posted about the need for a team on my blog and repeat here the observation that all members of the team, if not united in the fashion of Sonja's or my family member's teams were, must agree to communicate with one another on a frequent basis.  If the individual being treated is an adult, the family/advocate needs to obtain signed releases of information so that all team members can communicate.  More often than not I have found myself, as I know other parents and family members have found themselves to be, that quarterback.  It's exhausting but can also be quite rewarding.

Now I'll turn to Friday morning, the first day of the conference, and to Laura Hill, PhD, FAED, President/CEO/CCO, Center for Balanced Living, Worthington, OH, who presented the keynote following Executive Director of Feast Leah Dean's welcome.  As her bio for the conference notes, Dr. Hill together with Dr. Kaye at UCSD are "....working to transform clinical interventions into biologically based tools for patients and their families at all levels of care."

Before I share more, I ask that readers watch her TEDx Columbus presentation of 2012 because the 18 minute video provides the majority of what she said.   I'm going to talk about/reflect upon those aspects most significant to me.

Hill's presentation was a revelation to me and the continuing long breakfast conversation among those of us at her table the next morning reduced me to tears when I spotted Leah Dean shortly afterwards before Saturday's program began.  Tears, because I felt that another layer of the proverbial onion had been removed so I could better understand what my family member experiences and because part of me wishes that I and her team had known this information and the disease's probable affect on her from the get-go (25 years ago).  But we're here and it's now and I do hope that other parents will take the time to learn more about the disease from a neurological point of view.  I particularly liked the story about the dad who helped his daughter navigate dinner out.  I know that my family member appreciates having a copy of the menu before walking into a place.

We were reminded that responding to an eating disorder as one would, for example, to diabetes helps one to step back and understand this as an illness/disorder and not a choice.   The brain pathways of one with this disease do not communicate in the same way as those who do not have the disease.  The bottom line is your loved one cannot "just eat" or "listen to your gut" because her signals aren't using the same pathway as yours and/or they're different and perhaps even aren't felt. When s/he eats s/he has a different reaction to food.  One might also say, as do those who have the disease of alcoholism, that the person is "allergic" to food.  However, as I posted recently in my blog, food is life.  One can quit alcohol and/or drugs because these aren't necessary for life; one cannot quit food and continue to live. 

S/he needs help through therapy (think of Cognitive Behavioral Therapy or CBT or Dialectical Behavioral Therapy and focus on the word behavioral for a moment).  S/he needs to learn to think in order to manage feelings.  For many of us, it's not natural for us to think first and then act; often, we act first and then think.  Again, s/he needs to learn to think in order to manage feelings.

However, until your loved one has become re-nourished and stabilized  her brain most likely isn't going to be able to utilize any kind of therapy so the first steps, as outlined in this new F.E.A.S.T. Family Guide to Eating Disorder Treatment - How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S. , again are (p. 3)

1. the interruption of life-threatening behaviors
2. medical stabilization
3. normalizing nutrition and/or weight stabilization
4. development of a comprehensive, long-term treatment plan

Once these steps have been taken, then it's important to remember as revealed in the video linked above that her (and I'll stick to "her" from now on but emphasized s/he because boys and men get eating disorders, too) brain gives her different messages or even none at all (a weak or perhaps no signal from the gut) than you or I receive while eating.  Anorexia can flatten or even remove taste.  Those with bulimia often experience the first bite as tasting wonderful but subsequent bites not at all or vaguely similar so they start to "chase" after the taste sensation (and pleasure) of that first bite.  And, they often cannot sense that they are "full" until they've had practice focusing on what "full" feels like.  They need to learn how to compensate and more importantly they need to understand that it's not their fault.  And, parents, it's not your fault, either.

Dr. Hill also observed something that I lived during my early recovery and that was my discovery that I could maintain my recovery and progress by sticking to a very simple/few item meal plan.  I've never quite understood the practice of treatment centers laying out multiple choices in a buffet style and expect those in early recovery to be able to make choices.

What really shocked me was Hill's demonstration of the noise that can accompany eating.  I finally understood what my family member meant when she told me that as she returned to what had been determined to be a normal weight for her she could no longer read fiction because the chatter in her head got in the way.  I asked her, because it's been evident that she hasn't been psychotic, what she meant and she simply said she could not concentrate because of the noise.  I didn't understand what she meant; now I do.

Having watched the video, I suspect the reader has a greater appreciation for why not eating/staying hungry creates a much "easier" state for the person to remain in.  Being anxious is very difficult.  Eating has been found to vastly increase anxiety.   For those who are interested in another view on anxiety, I refer you to the revealing article titled "Surviving Anxiety" by Scott Stossel, the Editor of The Atlantic, a magazine I spotted on a rack at the airport before boarding my plane last Thursday.

The sequence of presentations clearly had been planned, for the next presentation of the morning was "Is there a role for DBT in the treatment of adolescent eating disorders? Who, When, How?" by Lucene Wisniewski, PhD, Clinical Director/Co-Founder Center for Eating Disorders, Cleveland, OH.

DBT is an acronym for Dialectical Behavioral Therapy.  There's a specific definition and protocol for this type of therapy that was first developed by Dr. Marsha Linehan for the treatment of suicidality and Borderline Personality Disorder (BPD) which she later revealed that she'd been diagnosed with herself.  If you want to learn more her and her revised view of the disorder of BPD, I recommend that you go this link.

My family member had been receiving a variation of DBT from an eating disorder specialist for many years but made little progress.  Last year her previous team leader found a therapist who is certified in DBT and adheres to the components of the therapy including - and this is very important because the person with Borderline Personality Disorder (BPD) can and will often overwhelm their therapist - having a therapist of her/his own to review progress with clients and the methodology.  I've written several posts on my blog about  BPD and read several books, as well.  Given that many of the behaviors that appear when one is in the thick of a battle with the ED resemble those of BPD, DBT is currently endorsed to be an effective therapy for those with eating disorders.

Dr. Wisniewski reviewed the basics of DBT and discussed its application for those with a diagnosis only of eating disorders including mild bulimia and binge eating disorder.  She also touched upon its use for those with more serious entrenched eating disorders who have also been diagnosed with multiple morbidities, for example Borderline Personality Disorder.

She explained that dialectical refers to thinking two things, often opposite, are true at the same time - for example, remembering what was described as noise above, "there's lots of noise and you still need to eat."  The therapy focuses on problem solving and skill building; it embraces both validation and change.  The goal is to think and behave differently.

Basically, as Dr. Wisniewski stated, BPD is a disorder of dysregulation and the dysregulation occurs in the person's emotions, interpersonal relationships, self - often the loss of sense of self, behavior, and cognition.  The person may often say "I don't think clearly."  Think about this and reflect upon what Dr. Hill said above and how much more difficult life must be for one with an ED and BPD.  This is relevant because many times those with ED also have BPD traits or even the full blown diagnosis and a careful analysis is a good idea if the thoughts/behaviors do not go away when weight has been restored and the person's state is determined to be in recovery.  [Incidentally, one of the best books I've read about BPD is Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, MD and Patrick Kelly, MD published by the Johns Hopkins University Press, 2011.]

Wisniewsky asked us to remember that patients and parents are doing the best they can; all want to improve, all must learn new behaviors in all relevant contexts, and finally that one cannot fail at DBT.  The treatment team or therapist may fail a person who needs it, but the person  does not fail.

The protocol for DBT is important.  If a parent or family member is looking for someone to provide DBT, they must use these classical primary modes and in the case of someone with an eating disorder they must be able to meld the modes effectively with those for the treatment of eating disorders.  I might add here that add to this certification in Family Based Therapy, and everyone wins.

The modes used by the DBT therapist are:

1. individual therapy with family involvement in a safe environment
2. group (i.e. interpersonal) skills for the individual
3. telephone coaching aimed to decrease crisis behavior and sense of conflict
4. team consultation/therapy for the therapist
5. a six month commitment

In closing this section, Dr. Wisniewski presented a valuable argument for the use of DBT.  Frankly, I wish I'd known about DBT almost forty years ago when I was recovering from bulimia.  I often use tools that my family member has learned and passed along to me when things seem to get out of control and they work!

Part 1: The F.E.A.S.T. Conference, January 30-February 1, 2014: Connecting the Dots - Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

Now living my 70th year, I am less enthusiastic about traveling given the increasingly unpleasant conditions one needs to contend with including less space, more fees, and fewer amenities.  However there are several things that will get me on-line to make travel reservations, among them visits to see my four grandsons (and their parents!); vacation trips, particularly those that give me some refuge from the summer heat where I live; and opportunities to learn - treks and conferences especially.  Included under the conference topic are offerings providing more up-to-date and family-based-therapy-oriented (the best kind IMHO) information about the treatment and understanding of eating disorders.

So, when F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders) identified Dallas as the location of the 2014 Conference scheduled at the end of January/early February, I  allocated accumulated miles towards a round trip (one hop) ticket, reserved my space at the early bird registration rate, booked a ride at a reduced rate on a shuttle that promptly picked me up and dropped me off going to and returning from the conference and booked a room at the Crown Plaza Hotel (for me 5 stars) located outside Dallas in Addison in what turned out to be a lovely neighborhood for walking at the end of the day.

Startling advances have been made in knowledge about and treatment of eating disorders from the time of my family member's first residential treatment in 1991 following at least two years of group therapy (I was told one month IP would do it, she could go on to begin college in the fall, and amazingly enough the cost at that time was $30,000) through her second relapse beginning in 2002 up to the present day as she continues to deal with the ED monster plus co-morbidities.  Although some therapists -- and organizations -- have continued to advocate for parentectomies and/or the sidelining of families where the individual's life takes place for a sizeable portion of the day, Family Based  Eating Disorder Therapy is gaining traction among psychiatrists, medical personnel, therapists, dietitians as well as treatment teams at major and well-known treatment centers coast to coast in the United States.

Laura Collins' book Eating with Your Anorexic (2005) was my first encounter with a variation of the FBT approach and although I learned much from it, we were not able to implement Laura's or later Harriet Brown's in her book Brave Girl Eating (2010) experiences because our family member's first encounter with psychiatrists at a local hospital and four months later therapists at a well-known residential treatment center told her that we were the problem.  Following treatment she refused to even consider living with us or our assistance in spite of our willingness to drop everything and provide her with a structured transition.  Fast-forward through more diagnoses, well-meaning but uneducated moves by those within her mental health provider to force her to choose to change her behaviors and "just eat" despite a severely malnourished state, many more residential treatment stays ranging from three to six (the longest) months that overlapped more recently with four years of a coordinated team approach to somehow find a way to help her change her behavior and here we are today with an exhausted and  discouraged woman who has pretty much given up on any hope of recovery from her eating disorder or a productive life unless she can find a solution to "the food thing."  The "food thing" and DBT appears to be her way "out" of several behaviors and she has an excellent local therapist.  Getting her to therapists and her dietitian and later getting herself there are major goals once she again is on her way to being re-nourished sufficiently.

As is noted and endorsed by top people in the field in the new F.E.A.S.T. Family Guide (January 2014) titled A Feast Guide to Eating Disorder Treatment:  How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S., (p. 3):  "The immediate goals of ANY [emphasis theirs] treatment approach should include:

1. interruption of life-threatening behaviors
2. medical stabilization
3. normalizing nutrition and/or weight stabilization
4. development of a comprehensive, long-term treatment plan"

Yet/meanwhile, advances in understanding have continued.   A clearer definition of Evidence-Based Treatment and its application in the field is causing therapists and psychiatrists to re-think and even profoundly alter their treatment approaches.  I wish more professionals would at least listen to and perhaps get away from stubborn denial that another approach could work.  Neurological studies such as fMRI studies conducted by Dr. Walter Kaye, Program Director of UCSD based Eating Disorder Research andTreatment Program, and interpreted for parents and families by psychologist like Dr. Laura Hill in her 2012 TED talk have revealed that the malnourished brains of those with eating disorders do not process information in ways scientists and therapists might expect.  Others like Dr. Julia O'Toole of the Kartini Clinic have begun to provide, through blood/endocrine studies of their patients, what she terms a "Definition of State not Weight."

The fastest way for me to learn about and understand and hopefully introduce to my daughter's treatment team (who are overwhelmingly busy as are most providers with multiple clients and limited time) is to either attend conferences or study published research papers which often need to be interpreted for a reasonably well educated person (me)  by people like Carrie Arnold who recently published Decoding Anorexia (2012).  When I hear about eating disorder conferences, I look for those that will provide me and others with updates and understanding.  The F.E.A.S.T. conference offered potential.  I grabbed the opportunity.

Although all the offerings were important to and well-attended by the conference go-ers, mainly caregivers, seven sessions were of specific interest to me to address the issues I've listed above.  I've attached a link to the bio's of all the speakers.  Here's a link to the full two-day program.     We were told that videos of the entire conference sessions and the powerpoints of presenters will be uploaded at a later date so I will not go into the detail I provided when I blogged about the first F.E.A.S.T. conference in 2011 (also in two parts and here are link one and link two for those - note that these are available via video on line) but rather quickly, in Part 2 to be published in a couple of days, describe some of the highlights for me.

Laura Hill's keynote, "Eating Disorders from the Inside Out"
Lucene Wisniewski's "Is There a role for DBT in the treatment of adolescent eating disorders"
Laura Collins Lyster-Mensh's "An Advocate's Vision for a Complete Spectrum of Care"
Siobhan McGurk's "It's Elementary:  Decoding the Evidence in Evidence Based Medicine, a How-To Guide"
Kerri Boutelle's "Family-based therapy; What parents should know"
Julia O'Toole's "Towards a Definition of State Not Weight"
Colleen Wise's "How to advocate/educate while telling your story"

I attended all the offerings except when two were offered at once.  I'm always interested in improving self-care -- needs to be extreme at times -- and learning about recovery stories so I attended those sessions offered the first day by Becky Henry and the second day by Julia and Sonja Kranz, moderated by a remarkable therapist (who blogs) Sarah K. Ravin. Two grandparents of another young woman who is in recovery offered "how can extended family support a loved-one with an eating disorder."  I enjoyed meals twice with the grandmother.  There were at least four young women in recovery at the conference. These conferences also offer opportunities for renewed and new connections.  I want to mention here that I am grateful to Claire S. for her warmth and companionship during the conference when I struggled at times.  We met each other on the van ride to the hotel and reconnected several times during the conference.  Claire runs two support groups in Santa Fe, New Mexico.

Before going into specifics in my next post (Part 2), I want to applaud the conference committee not only for an outstanding conference but also for selecting a wonderful hotel (food, service, areas to socialize, meeting and dining rooms, and my wonderfully quiet clean well-appointed room) that provided a map of a safe 2 mile walk through a neighborhood and around a small lake.  The schedule, while packed each day, was do-able and time was allotted for discussion.  When discussions carried over, flexibility helped those attending to gain more information.  Several speakers attended the meals and willingly shared more information and answered questions.  For example, I was bowled over by Laura Hill's willingness to enthusiastically share what she has learned by interviewing people while they are getting MRI's.  Several of us spent our entire Saturday morning breakfast plying her with questions which she expansively answered.  I entered the meeting room in grateful tears and profusely thanked Leah for such a great conference.  As usual, we all  laughed as well as cried during  sessions and all seemed to thoroughly enjoy the casual, western-themed dinner party on Friday night.

Finally, in this introduction to the conference, I want to comment on what seems to be a universal component for families and that is the sadness in the recognition of how perilous and tragic the assignment of guilt/blame is when families (both sides of the equation) are battling eating disorders. 
We can never know both sides of each family's and their unique beloved family member's story without living the experience with them.  Nor can we possibly fathom the anger that comes from involvement with the invader that takes a family member away from their family and often turns them into someone we don't recognize and sometimes who turns completely away from his/her family to the point of long-term estrangement.   Harriet Brown, in her book Brave Girl Eating, referred to that "person" as not-Kitty as a way of separating her beloved daughter from the eating disorder.  Colleen Wise described the loving effort she took to reunite with her precious daughter by arranging retreats for the two of them.  One cannot describe the agony of being a parent separated from the love of one's child by this wretched disorder.

I really do hope that someday each family member affected by an eating disorder can recognize that everyone was doing the best they could at the time with what they were told by people they believed knew what they were talking about.  A saying I learned (and have mentioned on this blog before) while attending a NAMI Family-to-Family course is "you don't know what you don't know."  We parents are forever learning how to learn while dealing with this awful brain disorder and its aftermath.  

A sincere thank you to everyone who participated in this year's F.E.A.S.T. conference.  

The Wellness Recovery Action Plan - W.R.A.P.

Almost two weeks ago, as I was sitting in a Crisis Center Emergency Room, a peer counselor started a conversation with me and introduced me to a program I'd not heard about before called the Wellness Recovery Action Plan.  I have since learned that this program is being used in other countries and is gaining traction in the United States as well as in my own community's mental health teams.

Here is the link:  http://www.mentalhealthrecovery.com/wrap/

The peer counselor handed me his copy of the manual (can be ordered on line) so I could browse through it while I was waiting.  My brief cursory review told me three things:

first, that the program actually is quite simple, straight-forward,and relevant;
second, that I might even be able to use it for myself, as a parent; and
third, that the forms included in the manual can be copied and used.


I ordered the manual and will write further, have adopted some of the practices, and wanted to provide another avenue to get this information "out there."  The acronym KISS comes to mind in a good way.

Back to Basics

I haven't been inclined to post lately, mostly because I've had nothing new to write about and have set an intention that I'll share new information here rather than rehash old stuff.

However, this past week I was again reminded that people who are not fully versed in eating disorders (by fully versed I mean eating disorders are their main focus rather than a subset of, for example, brain disorders/mental illness) forget a basic principle.  I'll get to the principle in a moment.

I thought of this principle in frustration the last few days and know that behind this basic idea is the message that the film Someday Melissa and other media continue to remind us of:  bulimia can be invisible except to the person who has this eating disorder.   (The blog linked within the site for Someday Melissa includes this post revealing that well known people like Lady Gaga, Katie Couric, Sally Field, Jane Fonda and Jessica Alba have fought this, as well.)  I know it was for my parents; they didn't have any idea.  I know it was for me when my family member seemed to be better for six or seven years before the relapse.  I know the seriousness of bulimia can become less visible to a treatment   team when they are looking mainly for weight loss.  Why?  because often, those with bulimia maintain a steady weight and appear okay; because often, those with bulimia carry on their binging and purging in secret and the effects can be invisible except to those who know what to look for.  The side effects of bulimia can and do kill.

The National Eating Disorder Association provides a helpful/informative summary here.   Re the effects of bulimia on teeth, I believe destruction of teeth not just staining would be important to add.

Years ago at the Grand Canyon I remember noticing a sign posted somewhere (I think at the South Rim) that says, "Water is Life."  Without water one can die on the trails of the Grand Canyon.  Without water, one can die.

Well, food is life, too.  Without food, life dies.

A drug addict or an alcoholic can quit the drug or quit the alcohol and continue to live.  This decision can be more difficult for some than others, but they can quit.  Those who have managed to quell these addictions and maintain recovery sometimes believe that those with eating disorders should be able to quit, too.  Straight forward thought but misguided. 

One cannot quit eating food and continue to live.

Overcoming anorexia is hugely difficult but can be done, especially if the family of the person allies with their relative to seek assistance to overcome it early.  Overcoming anorexia subtype bulimia is also hugely difficult because the anxiety and the fear of food is still there but in addition the person has developed an addiction to binging and purging that leads the person to eat the very food(s) s/he is afraid of.  A vicious cycle. But not insurmountable.

Recovery is possible.  Habits can be broken and these diseases can be overcome.  How?

To quote Sarah Ravin in her excellent post "Expanding Our Minds:  Towards a Biologically-Based Understanding of Eating Disorders" of January 18, 2014:

".... behaviorally-based psychological treatments focused on symptom management and skills building can be very effective, in large part because they change the brain [emphasis mine]."

One effective treatment for bulimia is dialectical behavioral therapy (DBT).   Dr. Ravin writes,

".... CBT and DBT are forms of psychotherapy which involve a relationship with a therapist who instills hope, provides support and feedback and accountability, promotes awareness of thoughts and feelings, and teaches adaptive skills for managing life’s challenges."

I encourage adults and older teens who are fighting bulimia to take a look at Kathryn Hansen's book, Brain Over Binge.  I reviewed this book here on my blog.  Again, one can change the pathways in their brain and learn new healthy behaviors.

Family members can be allies here, too.

I again refer the reader to Dr. Shari Manning's book, Loving Someone with Borderline Personality Disorder.  Although the book is written for family members and friends of those with BPD, in fact the information and skills provided helps family members ally with their loved one against bulimia.

My closing question is this:  how does one solve the "food thing" as a transition for an adult who lives independently?

Food is life.