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.  

Courage, Hope and Support Groups

Occasionally I provide posts here written by Marjie Ruth who hosts a support group for parents of loved ones with ED in Tampa, Florida.  I've left that section of the post here in case anyone living in the area needs a support group.  I know when my loved one was diagnosed and for several years afterwards I did not know where to turn for support.  Tucson has a great support group now and I can put anyone who reads this who lives in this area in touch with the leader.


When my loved one's illness returned with a vengeance, I called a friend who is also a therapist in hopes of learning of someone who might be able to work with my loved one.   My friend offered some words of wisdom, given my loved one's physical state at that point, which were "Hope for the best, prepare for the worst."

I have spent the past 9 years doing just that while taking care of myself in a number of ways as well as continuing to search and uncover opportunities for my loved one to, if they are willing, pursue treatment(s) that will lead to recovery.

I realize that the phrase "if they are willing" will irk some readers who don't believe it's wise to wait until willingness happens - and I agree when someone is first diagnosed with an ED -- so I want to note here for a newcomer to my blog that my frame of reference involves more than eleven years of treatment in a variety of settings as well as in the past year a return to a brain nourished state.  At some point the willingness of an adult with an ED to work with experienced therapists and other team members becomes part of the equation, especially when -- I've provided a link to information from the National Alliance on Mental Illness (NAMI) -- insight (as opposed to anosognosia) is apparent.  I pray daily that the willingness will kick in.  My loved one has a will of iron; would that my loved one would resolve to get on the road to recovery!!!!

Continuing to hope, I know, takes a lot of courage.  Much of what Marjie writes in the following post I'm sure is recognizable to so many of us who have a loved one with an eating disorder.  As research by people like Dr. Walter Kaye continues, as information about co-diagnoses and their influence on eating disorders becomes known, and as work by family members and others to offer a shoulder to lean on (and so much more) increases - F.E.A.S.T., Maudsley Parents, NEDA, etc., - there remains a great deal of hope........

Courage is what it takes to stand up and speak; 

courage is also what it takes to sit down and listen. 

~Winston Churchill

Dear Family & Friends of the Eating Disordered;

The support group will be meeting again this week at 7:00pm on Wednesday evening (8/7) at the Hyde Park Counseling Center in Tampa. We've been having some great discussions, and this week we'll begin taking a closer look at a book called "The Happiness Trap" by Russ Harris. I'm looking forward to seeing any & all who can make it, and please be assured that all are welcome. The ABA 12-step meeting will also be happening upstairs. Please shoot me a quick email if you think you will make it to the meeting.

From the subject line and from the opening quote, it might appear that I'm adding yet another word beginning with "C". Courage is most certainly one that we could add to the list. I think finding the courage to persevere, overcome denial, and confront the necessity of change within ourselves is a huge part of coping with a loved one's serious addiction. On a day to day basis, it sometimes seems to require almost Herculean strength just to get out of bed to face another day of doubt and despair, frustration and fear, anger and anxiety. Living with someone who is deep within the grip of an eating disorder (or any addiction) is surely akin to experiencing a bit of hell here on earth. Those of us going through it can not really describe it or explain what it's like to others...not only is it painful and embarrassing to detail, but it also seems to defy any adequate verbal expression. Yeah, guess you just have to be there--but I certainly wouldn't wish that on anybody. 

As we share in group there are always nods of agreement as someone describes what would seem to any "outsider" as a patently insane scenario, but for those in the room it's pretty much universally understood. I guess to some degree misery does love company because there are times that we laugh as we realize that we don't have to explain or justify to others in attendance because they've visited the very same depths of the disease. It's a laugh of some relief at the fact that we don't have to defend with this group. It's an expression of true empathy that comes from mutually shared experience made even more significant by the suffering at its core. Often when I speak with someone for the first time, whether in group or over the phone, they're amazed that I know so clearly what they're talking about and surprised when I can share descriptions that are completely in line with their own. After groping alone and in the dark with the horror of this disease, there is some comfort in finding others who understand and have seen first hand what they and their loved ones have lived through and to talk about it.

And that's probably the main reason we cling to one another: we seek hope and crave reassurance. So while courage is an important attribute, we are focused on that which may give us courage...hope is the ingredient that helps us to cope. Having hope means more than just wishing that things would get better. Hope requires some basis upon which to have an expectation of things to come. We might search for that basis in the form of a medicine, a treatment center, or a therapist for instance. We scour the internet, ask medical professionals, and pray for answers. When we read or hear of someone's recovery, we want to know the key factors and how we can make use of them. We find some hope in another's recovery even while dealing with the fear at the edge of our mind that wonders if it will happen for us.

Perhaps our time of greatest hope is when our loved one goes in for residential treatment (hey--with 24/7 therapeutic care and a price tag that makes one cringe, haven't we paid for a bucket load of hope?). Going in for treatment is a very big step, and with it comes expectations for some real recovery. Come on, let's be real here. Our hope is that serious treatment will result in a very real cure. OK, if you're well versed in your "C" words, you know that we don't think in terms of a cure, so we'll settle for some serious progress. But how can we help but expect some big bang for all those bucks??

Look back over the last two paragraphs, and you'll notice the 3 italicized words. Ring any bells for you?? One of the premises that I've talked about previously is that expectations are the building blocks of future resentments. Those is ED therapy talk about the expectations of others by using terms like "trigger", "burden", "stumbling block", and "wall". One of the common personality traits of the eating disordered is that of being a people pleaser and a perfectionist. Our expectations (including those we've expressed &/or implied as well as those they may assume and imagine) have a huge impact on our loved ones, usually more than we realize as their impaired coping skills may blow them out of proportion. Thus it behooves us to  be aware of the expectations we do harbor and to be willing to examine their source and question their validity. While we may hope for progress towards recovery, are we expecting an unrealistic amount of change? Is the hope that therapy will help develop better emotional coping mechanisms while the expectation is that the eating disorder will be gone when residential program concludes? Is the hope that he or she will learn to make healthier decisions, and the expectation is that all those decisions will be the same ones that we would make??? And what will our reactions/responses be when those expectations aren't met? More importantly, how will such expectations affect our loved ones?

So, where does this leave us as far as our having hope is concerned? Hopefully, it will help us to think more deeply about just what it is that we are hoping for. A young girl may hope to be a princess when she grows up. We smile at the notion even as we hold her in our arms and twirl her about the room. There is no worry as we enjoy the childhood innocence, confident that in due time her maturity will bring her hopes in line with reality. Shouldn't we ask the same of ourselves--that our hopes be mature & in line with reality--and especially so knowing that our hopes do affect our expectations which in turn have an impact on those we love?

Eating disorders are horrible addictive diseases that ravage bodies and even claim lives. Yes, that is an awful truth. But an equally important truth is that there are many people who have managed to progress well into recovery and are leading very productive, fulfilling, and happy lives. I personally know individuals who have managed to crawl back from the depths of very serious ED's and are now enjoying healthy adulthood with successful careers, happy marriages, and even as parents of their own children. Recovery is possible. Recovery does happen.

You've heard the expression: Be careful what you ask for, you may get it. For us it is more a matter of learning what to hope for. Do I hope that my daughter will get to the point that her decisions are always ones that I approve of--or--should I consider hoping that she will grow to a place where she will have the confidence to be honest with herself and others and be able to think more clearly about the decisions she makes so that she will be confident in them and able to live comfortably and healthfully with the consequences? There is a big difference, and I hope I am learning to understand & use that knowledge in my own life because making some critical adjustments in my own thinking may be the best thing I can do for my daughter.

And what about you? Are you willing to examine your own hopes? Gosh, I hope so.

Marjie Ruth
727-244-9011 (c)

sruth1@tampabay.rr.com

What about the "contributing to" part?

[edited an hour later after thinking about this even more]

I spent several days thinking about the title of this post because I wanted to catch attention and at the same time not totally alienate those who firmly believe that "contributing to" in terms of the family is not a factor in the development of an eating disorder.  Note, I did not write the word "cause."

I think "contributing to" can be a  factor.  My daughter thinks so.  I agree with her. Environment is a factor.  Family is part of the environment.  Sometimes the family needs to engage in therapy if only because the family's son's or daughter's brain works differently and so the person needs a different communication or sensory  environment. We are all different.  Not even twins are the same.  Remember that I fought bulimia for more than 15 years and slipped into anorexia at least twice, judging by photos and family recollections.  I know my thoughts in this paragraph are true, at least for me and for my daughter.  I imagine they are true for others.

What has prompted me to write about this again?  I have written about this because the subject keeps cropping up and even dividing groups that all have the same goal - recovery.

 I have written about this issue before in two of my essays:  "Reflections on Communication - Family Week" and "All in the Family and Elsewhere". 

Here's the current thinking about what might cause an eating disorder.  This is taken from an NIMH publication titled "Understanding Eating Disorders" .  I could have used a variety of sources but I think many would agree with these basic points that continue to be referenced:

"There have been a number of studies showing that people who develop anorexia nervosa have certain traits in childhood that put them at risk, such as anxiety and perfectionism. If people do not have those traits, they are probably less likely to develop an eating disorder," says Walter Kaye, M.D. He directs the eating disorders program at the University of California, San Diego and also receives NIH funding for his research.

Studies also show eating disorders run in families. But is it nature or nurture, inherited or learned behavior? Studies of twins suggest that genes play a role. To help further research into the genetics of eating disorders, Drs. Kaye, Bulik, and other researchers are collecting DNA and blood samples from people in families where more than one person has anorexia nervosa. NIMH is supporting the research and will maintain a bank of the DNA and cell lines collected, so they can be used by researchers trying to identify variations in genes that affect the risk for anorexia and bulimia nervosa."

I then turn to, as an example and there are others listed here on my blog, all of Dr. Janet Treasure's research and work, too, noting her and her colleague's book - Skills-based Learning for Caring for a Loved One with an Eating Disorder - the New Maudsley Method - family dynamics are hugely important in the recovery of a loved one.

Again, in this context my statement about contributing to is a positive step/thought towards examining the home environment so it will be as supportive as possible.  At the time of the onset of my illness, this did not happen.  Heck, my parents didn't even know about it.  Early on they knew something wasn't right and even hospitalized me but neither they nor the hospital staff knew that I was binging and purging and there was no way I was going to tell them.  Things were going on in my household that were troubling and upsetting.  B/P worked for me. I hated that I was suddenly gaining weight.  Purging soon became a habit and I was vulnerable to that development.   At the time of the onset of my daughter's illness, this examination and change did not happen, either, although I did arrange therapy and then a month's hospitalization for her.  I did not know any better because my own environment growing up was similar.  I did not know the science behind eating disorders.  I figured if I could get well (eventually), so could she because she did have access to therapy and I didn't.  What an error in thinking that was!!!

 I did learn to change.  It involved hard work.   I truly regret my lack of understanding and knowledge and have made it my life's purpose since to learn more and therefore to support and advocate for my daughter for years now.

So, on the thought of contributing to -
The family environment may be wonderful; but the school environment may be awful, either for example due to bullying or due to scholarly expectations that are beyond the person's ability to handle. The family needs to know and/or to find out about this and respond to it as well as to the following examples.  The family may be wonderful; but a person's peer or relative sexually assaulted or raped her and she is hiding the emotional triggering fall-out from that event.  The family's environment may be wonderful but another event - even an activity - in the vulnerable person's life has opened the door to disordered eating that leads to an ED.  Think about hormonal changes, too.  Think about the adolescent developing brain and impulsive behavior.  The family dynamics may be tense because the breadwinner's (or plural) environment may be brought into the house at night.  The family dynamics may be tense because a caregiver is starting to chafe about wanting to make her or his mark in the world and feels trapped.  The family dynamics may be awful because one member (or more) is abusive.  The family dynamics may be disrupted because of divorce and perhaps the continuing bitterness that just might be affecting the vulnerability to an ED.  Divorce itself can be a triggering factor.  The family dynamics may be disrupted because another family member may be seriously ill so less attention is being paid to one - the vulnerable one - who needs it during adolescence.  The family environment may be wonderful but the person is mentally ill and is frightened and confused by what is going on in his/her mind.... and is genetically vulnerable to an ED.  I could continue this list.

Then there's the whole issue of societal norms, changing values, peer pressure, substances abuse and advertising......

My point is that something probably contributed to the appearance and continuation of the eating disorder beyond the genetic component.  Something triggered that genetic component.


So, how to address all of this?

A solution would include helping a person to  manage change.  This link offers some thoughts on this.
If your child is an adolescent or younger, I'd recommend the book Help Your Teenager Beat an Eating Disorder.  The authors, James Lock and Daniel Le Grange have written an excellent resource.  Again, Janet Treasure, Grainne Smith and Anna Crane's book, Skills-based Learning for Caring for a Loved One with an Eating Disorder offers insight to change.  A supportive environment is hugely important, whether it be a home or a residential treatment center or a hospital.  Love is important.  So is the immensely important recognition of the fear that underlies so much of the behavior of a person who has become trapped in an eating disorder.  The knowledge and understanding obtained by attending a conference put on by NEDA or Maudsley Parents or NAMI might help.  A trip to San Diego and a week at Dr. Walter Kaye's clinic might help.  If the family has support and structure and training to endure the hard work involved in treating the child at home using the Maudsley Method, recovery may be possible.  I say "may" because this method does work but not for every family nor can every family manage the complex arrangements that are involved, including, of course, financial support.  Here's the latest on the efficacy of this approach.

Therapy and medications certainly can be a factor but nutrition - meaning food as well as a balanced meal plan behind it to provide things like calories and electrolytes and fatty acids (think omega-3's) and necessary enzymes and vitamins is the first step.  Sometimes it's important to provide supplements but the bottom line is food. 

The  magic bullet, if one can call it that,  is "food is medicine."  The how to get them to eat is the frightening hurdle.  Creating an environment where this can happen is paramount to - using that phrase again - contributing to their recovery.  The environment must not be punitive.  Everything must be done with caring and love for this person, and sometimes that can be very difficult to pull off when the person is fighting every step of the way.     It's very, very hard work.

Post Traumatic Stress Disorder

[Warning:  this may be triggering to those on the path to recovery from an eating disorder.]

The National Institutes of Health website includes a document on Post Traumatic Stress Disorder.

As the article notes, PTSD is a type of anxiety disorder.  It can occur at any age.  It can follow a natural disaster.  It can follow traumatic events.  The causes listed include:

• Assault
• Domestic abuse
• Prison stay
• Rape
• Terrorism
• War

I believe that PTSD can occur to those who are witness to the destructive effects on a family member of serious diseases like cancer and an eating disorder.  One study documented that some family members are still feeling the effects of the trauma of cancer in a young family member 10 years after the event.

Wait, you say.  But eating disorders?

Yes.  Eating disorders are biologically based brain disorders that affect the behavior of people who develop them and affect family members who more often than not become distraught by the changes in personality and physical health that occur in their loved ones.

Yes.  It is believed that eating disorders are the deadliest of all brain disorders .  "Anorexia nervosa (AN), in particular, has the highest mortality rate of any psychiatric disorder.  Risk of premature death is 6-12 times higher in women with AN as compared to the general population, adjusting for age."   Work is continuing to reduce that number and, in fact, the number may have been reduced somewhat by the knowledge that has been gained in the past couple of years including the increasing visibility of family based training (FBT) and what is referred to as the Maudsley Method, first developed at Maudsley Hospital in England.

But, still.

So, to those who leap to the conclusion that a family member exhibiting behaviors that seem like PTSD
Quote from the linked article:
PTSD can cause many symptoms. These symptoms can be grouped into three categories:
1. Re-experiencing symptoms:

• Flashbacks—reliving the trauma over and over, including physical symptoms like a racing heart or sweating
• Bad dreams
• Frightening thoughts.

Re-experiencing symptoms may cause problems in a person’s everyday routine. They can start from the person’s own thoughts and feelings. Words, objects, or situations that are reminders of the event can also trigger re-experiencing.
2. Avoidance symptoms:

• Staying away from places, events, or objects that are reminders of the experience
• Feeling emotionally numb
• Feeling strong guilt, depression, or worry
• Losing interest in activities that were enjoyable in the past
• Having trouble remembering the dangerous event.

Things that remind a person of the traumatic event can trigger avoidance symptoms. These symptoms may cause a person to change his or her personal routine. For example, after a bad car accident, a person who usually drives may avoid driving or riding in a car.
3. Hyperarousal symptoms:

• Being easily startled
• Feeling tense or “on edge”
• Having difficulty sleeping, and/or having angry outbursts.

Hyperarousal symptoms are usually constant, instead of being triggered by things that remind one of the traumatic event. They can make the person feel stressed and angry. These symptoms may make it hard to do daily tasks, such as sleeping, eating, or concentrating.
It’s natural to have some of these symptoms after a dangerous event. Sometimes people have very serious symptoms that go away after a few weeks. This is called acute stress disorder, or ASD. When the symptoms last more than a few weeks and become an ongoing problem, they might be PTSD. Some people with PTSD don’t show any symptoms for weeks or months.

---

 or who appears to have  become or is enmeshed with the loved one with an ED, stop for a moment and think about the trauma that a parent especially often goes through when their child or adolescent or even adult child or spouse [only some behaviors are listed here of the many that occur]

• stops eating
• loses weight dramatically
• exercises compulsively, sometimes late at night or in their room behind a closed door
• becomes violent and abusive day after day after day when presented with food and asked to eat
• gets up after everyone has gone to bed and eats everything edible in the refrigerator or pantry and then either vomits the food into the toilet, into plastic bags they store in their bedroom, or into the garbage bin, or in the shower (while the water is running and running and running)
• turns to cutting, drugs and/or alcohol in an attempt to subdue their anxiety when presented with food that to them increases their anxiety when they eat or that helps them get through the cycle of binging and purging
• tries to separate family members such as the mom and dad so they can continue their ED behaviors because one of the parents may not believe the situation is as serious as a medical emergency, which eating disorders are
• drinks water to the point of hyponatremia or purges food and therefore electrolytes resulting in a visit to the ER only to receive an IV that corrects electrolytes and then sent out the door within 24 hours because they are determined to be "stable" even if they are visibly emaciated
• uses laxatives even though either there's nothing in the intestinal tract to process or because they believe the laxative will interfere with digestion and absorption (doesn't work, actually) and again terribly interfere with their electrolyte balance
• is ejected from a residential facility because their behavior is disruptive to other patients and the facility does not have the staff or the treatment area to help them through the rage phase 
• emerges from a long residential treatment only to return to those behaviors
• or even dies no matter what treatment has been available and/or provided

How helpless and angry a parent can feel  when they are blamed for an eating disorder even though in multiple children households no one else exhibits or exhibited eating disorders at the same age or even if they do; when their family is labeled dysfunctional because when they finally seek help they are all torn apart by watching what has been happening; when they cannot scrape together the funds to pay for treatment that may or may not -- after many attempts -- work; when their insurance policy listed as comprehensive only provides 10 days or a month of treatment when research is showing a person needs a full year at least of complete and steady nourishment in order to even get on the path to recovery; when there is no one for them to talk to/with because a support group is not available or they themselves cannot afford supportive therapy to cope with the horror of what is occurring in front of them.

I have touched upon some of this in my essay here on this site.  I am grateful for the support I have found among friends, at an Al-Anon weekly meeting I attend without fail unless I am out of town, by working with a therapist who "gets it" and who has worked with me so I have the tools to keep going, from the people on supportive websites such as Something Fishy and Around the Dinner Table/F.E.A.S.T., and by working with a team of professionals to address the effects of this horrid, horrid disease on my family member.

PTSD is very real among us parents.  It can disable us when the illness goes on for months or even years (and to some parents even a few weeks can feel like a very long time).  If you are reading this and are a professional who is working with a child or adolescent or adult and often seeing his or her parent or significant other in the waiting room, please remember to ask her or him how they are doing and if they need help.  Recommend that they carve out some time for themselves to do something they enjoy even if it's only a nap or a brief walk with the dog or a date with their significant other.  Recommend that if they can afford to, to see a professional themselves.  If you have time, develop a list of  resources for that parent or significant other.

It can be for some a very long road and sometimes the light just doesn't seem to appear.

Avoiding Fragmented Treatment for the Adult with an Eating Disorder

[Revised 3 28 2019]
Walter Isaacson's biography, Steve Jobs, captivated me.  

Isaacson created a superb volume that not only captured Steve Jobs' life, but also captured the last few decades during which technology took an enormous leap forward as well as the management/operational philosophy that kept Apple in the lead. 

So where's the connection with eating disorders?

The philosophy he espoused at Apple has not yet been fully embraced by the health care field, an area that must adopt such a philosophy on behalf of its patients whether they have pancreatic cancer or an eating disorder. 

Steve Jobs noted at the end of his life, that ".... he was facing the type of 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.... [emphasis mine].

In addition, Isaacson writes, Jobs' wife, Laurene Powell stated, "One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team."

In Jobs' case, this meant that "....nobody seemed to be in charge of figuring out how nutrition was related to pain care and to oncology."  [Steve Jobs by Walter Isaacson, Simon and Schuster, 2011, excerpts from pages 549-550.]

As the mother of an adult who has been in and out of treatment centers and on the "outside" working with a variety of psychiatrists, psychologists, nutritionists, medical doctors, other health care workers, and therapists for more than 30 [2019] years, I have seen the exact same thing happen in her world as Jobs' described in his. 

My loved one came close to getting the perfect kind of care she absolutely needed while in residential facilities, especially the two most recent times, when all of this and food as well as a bed was put together at the tune of what normally is charged -- anywhere between $1,000 and $2,500 a day.  Since even looking at those figures can be frightening, it is especially so for those who lack health insurance or whose insurance company does not provide coverage for eating disorders which are biologically based disorders.  The brain is a physical part of the body, is it not?

More recently my loved one, because of her diagnosis here in Arizona, received a two-tiered approach -- the behavioral health team took care of everything above her neck that was inside her skull (even the meds prescribed that clearly had an effect on her entire physiological being); and the medical piece (everything below the neck or not involved with the brain) was the  responsibility of a medical doctor and secondarily of a nutritionist.  

The caseworker's responsibility did not at first  carry over to the medical piece.  This oversight somewhat changed further along in a critical period, an enormous credit to her behavioral health care organization here in Tucson.  However, there was and still is no provision of food/appropriate nutrition and its preparation and delivery by any kind of insurance covered treatment for eating disorders outside of the hospital or residential facility in this dynamic.

So the question is for her and for many, what does an adult do after leaving a residential facility to maintain his/her eating patterns?  What might make this easier?

Food is medicine for those with eating disorders as I've noted and explained elsewhere on this blog.  This concept is the backbone of the people of F.E.A.S.T.  many of whom feed their younger loved ones at home.  As I have written elsewhere, often adults will reject this approach of living at home under the watch of a parent.  Without food, the body will die.  Without biochemical balance, the body will eventually or suddenly die.

Several other things happen to the body when it is malnourished or mistreated, too, that also can lead to death.

Because insurance companies pay attention to the bottom line, they rarely grant more than 30-60 days of residential treatment for someone whose eating disorder has taken over their life.  Believe me, an eating disorder is a deadly disease that can require months of therapy, re-nourishment and monitored eating (depending on the diagnosis that can range from anorexia to bulimia to ed-nos to binge eating disorder and probably several other varieties that do not yet have a name) and then possibly years of staying vigilant against the threat of its return depending on their incorporation of some form of cognitive therapy.  An eating disorder indeed  takes over their life.  Their behavior patterns are altered; their brain chemistry changes.  Eating disorders are the deadliest of all brain disorders/mental illnesses.

A caseworker working with the individual (e.g. an independent adult) or the family (adult living at home or a person under 18) would certainly help to keep everyone on board and communicating with each other about the care of the person with an eating disorder.  Often this falls to the mother, or the family, or a concerned advocate who is at the same time often responsible for making a living full time on behalf of the family/individual.  This is difficult at best and impossible for some to handle.  

A neutral person, highly skilled in the field of eating disorders and paid for by insurance, might be a better answer.  For example, a caseworker might be a psychiatric social worker with experience and training in the field of eating disorders.

How can we as a society make certain that until scientists figure out the "why" and develop a "cure", if such a thing is possible (and I believe genetically it is), we must create a seamless method of treatment and care for each and every person who develops an eating disorder and ensure that a caseworker as well as food/proper nutrition and its preparation and delivery are part of that prescribed treatment, whether the person is in the hospital, a residential facility, and out-patient facility or at home. 

For the most part, each person who has been diagnosed with an eating disorder, shows incredible promise to our world.  They tend to be intelligent, driven, and perfectionistic often obsessed with details as well as able to see the entire picture when their brains are working correctly and they are well-nourished.  Economically speaking, they represent the next generation of people who will invent; create; lead; write music, poetry, novels; create beautiful works of art; discover cures; raise talented children....... and take our country forward.  It is estimated that at least 10 million people in our country have eating disorders and need help.

Surely our legislators and our government can work together to make sure that those with eating disorders  receive care that is not fragmented as they work to get on and stay on the path to recovery.

Rules of the House When an Adult Returns (or for a teen who already lives there)

[The following post may be triggering for those with active eating disorders.]

The topic of rules of the house has come up now and then on a site I frequent for parents of those with eating disorders.  We certainly needed to address this subject six years ago when my very ill loved one rejoined our household after living either independently or with a significant other for more than ten years.  Our goal was to help her stay alive and get her into treatment when she was willing to take that step. Parents of adults returning to the household might want to consider this step, too.

Other parents need to bring up this subject when things go completely out of control in their household when ED (the Eating Disorder) moves in and takes over the mind of their teenager or younger child although this post is directed  for parents of teens and adults.  

In either case, many have experienced the aftermath of midnight binges, the discovery of money missing from the community food jar or even checks and credit cards from a purse/wallet, food wrappers in a personal closet or under the bed, a clogged toilet or shower drain, stashes of food not eaten or bags of regurgitated food somewhere in the room or in the garbage bin, etc., etc.  Others have been shocked to discover their loved one has been out and about late at night, either on foot or in the car.   For some, suddenly all the behaviors a parent thought were part of (relatively speaking,  given teenage years) peaceful daily living in the house have been replaced by those of a seemingly rebellious person intent on creating mayhem.

Once I shared some samples from teenage rules kinds of sites on the above-mentioned eating disorder site, I read a range of reactions.  Some parents simply shut the door and continued taking their child to therapy, figuring the behavior might improve.  Another couple I know locked their bedroom door each night; another put a lock on the pantry; another, a lock on the refrigerator; one kept no food at all in the house for a period of time.  Some took away car or other privileges.

We took the attitude of "our house, our rules." Given the age of our loved one, we're older, too,  and not as amenable to disruption as younger parents might be.  We did find ourselves retreating to our bedroom on occasion and shutting the door for our own time out.  But for the most part, because we negotiated rules with our loved one who also consulted her own therapist before the final draft was acceptable to all, we reached agreement on a  list that worked for our family in our situation.  Every family is going to be different.  I discuss this on a post re communication, too.

The suggestions of the communication method LEAP help a lot in this process.

I  went searching for the original draft because it was fairly comprehensive and might serve as a working template for those considering inviting their adult back into their household.  Of course, the list will pertain to their knowledge of their loved one's behavior.  We've heard comments from others with an adult with an eating disorder like "our adult is behaving like a teenager again!"  And, of course, these documents can always be renegotiated as things get better or possibly become worse.  

We do recommend  that the document be treated like a contract and that the parent(s) be prepared to firmly stand behind the boundaries listed.  As many parents have discovered, it's not uncommon for one with an eating disorder to try to get around the rules.  Secrecy is a major tool.  So is the ED's manipulation.

As will become obvious very quickly, the parent(s) must follow these rules, too!  The expression, do as I say and not as I do does not work in this situation.

Here is that draft drawn from several sources before we altered it to fit our situation living here in the desert with scorpions, cockroaches, and crickets:

1.         All communication channels will remain open between and among all members of your team, including your parents -- with no restrictions. 

[this one is key; without this provision things can get out of control really fast]

2.         There will be no physical or verbal abuse in the home.  Verbal abuse includes yelling.  This includes obscene gestures, as well.  No slamming of doors. [We know a parent who removed the door to his adult child's room; another who removed a teenager's door.]

3.         Treat household members and property with respect.

4.         Your room must be clean before you leave for the day/go to school, etc.

This means:  bed made, clothes picked up off floor and either put in drawers, hung in closet, placed on appropriate shelves or in dirty clothes basket; other things put away in drawers or ordered neatly on dresser surface.  

5.         Kitchen: Dishes are not to be left in the sink. Wash and put in dish drain/ or place in dishwasher. Clean up any spills right away. Clean up eating area after each meal including floor

6.         All food is to be eaten in either the kitchen or dining room area.

7.         Kitchen/pantry is off limits after dinner and before breakfast.  [For those parents new to bulimia or binge eating disorder, those with bulimia or BED often may binge in secrecy either in their room or in the kitchen after everyone has gone to bed.  The purpose of this rule is to take a stand against binge eating to make it clear that this behavior is not allowed.]

8.         No visits to the bathroom for at least 45 minutes after meals/snacks 
[Often a loved one will retreat to the bathroom immediately after eating to purge what s/he has eaten.  This rule is to prevent this from happening.  After 45 minutes to an hour, a lot of the nutrients eaten have been absorbed so although vomiting will be very detrimental for electrolyte balance, calories will not be as severely affected; ditto, by the way, re laxatives]

9.         Laundry room: place only washable clothes in washer/dryer.  Clean lint filter as well as washing machine filter after each use.  Work with parent(s) to learn operation.

10.       No activity in common areas before 5AM. [Sleep is critical!]

11.       No leaving the house by any means after bedtime and before 5 AM (see item  #10)
[we have a house alarm that signals when a window is opened......]

12.       Curfew is  by 6 pm for dinner (this is negotiable depending on snack and dinner time)

13.       Parent(s) bedroom/bathroom is off limits

13.       Telephone - early morning cellphone calls  (before 7 am) need to be made in your room; moderate your voice.   House phone: No long distance or toll calls without prior permission.

14.       Clean common areas after use.  Pick up personal belongings and put them away in the evening before bed.

12.       Do not borrow or take any item in the house without permission.

13.       No visitors in the house without parent(s)' permission and presence.

14.       Chores must be done per list.

15.       No smoking/alcohol/illegal substances -- depending on your loved one's behavior(s) re brain function-altering substances

16.       No diet soda or other foods with aspartame; caffeine only in the morning incl all beverages or Excedrin (the purpose of this rule is to help you sleep at nighttime).  [On this point I believe that aspartame is toxic at the levels those with eating disorders often drink soda or add packets to coffee/tea and Excedrin has caffeine.]

17.       Room and Board is $xx/week.  Some might add points about gasoline allowance; car usage; allowance; missed appointments and charges for those if parent is paying; fines incurred, etc. or of course not charge for room and board.

MEALS

1. Three meals a day plus two snacks.  Breakfast and dinner taken here at the house unless dinner is scheduled at  with others.  Lunch here if you are here; pack a lunch or plan on purchasing lunch if away from the house.  [This item is important for those who are helping in the re-feeding process.]
2. No forbidden foods unless doctor prescribes specifically (e.g. gluten-free).
3. We will work with you on the menu and intake to slowly re-gain weight to a healthy level [respect for the adult that s/he is]

CHORES LIST

1.         Help with house and yard work as requested [depending on physical condition]

2.         Keep the guest bathroom clean - floors, sinks, toilet – and personal belongings in appropriate places.  Hang towels and washcloths neatly on the racks.

4.         Keep your room clean - dust/vacuum as necessary

5.         Change and wash your sheets at least once a week, wash your towels at least twice a week

CONSEQUENCES:  Non-compliance will result in you being asked to leave the house and make your own living arrangements.

I agree to these rules: _________________________________ Date:  ______________________

The Family is the Key

June Alexander and her her co-presenter on ‘Hope at Every Age’ at the 2011 NEDA Conference, Assistant Professor Renee Rienecke Hoste, from the University of Chicago, explains why family involvement is important.  

 

This is one of the best wrap-ups I've read re Family-Based Therapy and why the involvement of the Family is so very important.

Report - Day Two - The First Annual F.E.A.S.T. Symposium: The Map Ahead - November 3-4, 2011

Following breakfast on Friday morning, we all moved on to the ballroom to hear remarks by a panel of four women representing the United States (Colleen Wise), the UK (Rachel Polonsky and Maria FinnisChataway) and Australia (Bridget Bonnin) moderated by Susan Ringwood, the Chief Executive of BEAT as well as a member of FEAST's Professional Advisory Panel.  Their goal was to "put parent concerns and assets on the map:  the law, healthcare policy, advocacy."

(For a look at everyone serving as 2015 board members of  F.E.A.S.T., go to this link.)

After introducing themselves, each spoke of the idiosyncracies of their country's treatment policies, insurance coverage, availability of health care as well as level of care.  Insurance was not an issue in the UK or Australia whereas trying to find funds to get treatment for loved ones in the United States was described as a totally different (as we know) situation.   Colleen brought the house down by remarking she regretted that she was the only one on the panel without an accent.  Her remark actually cut the tension for we were all in for an emotional ride over the next hour while each described her personal experience.  I could see heads nodding around the room as we identified with the journeys being presented.  I could not help but cry when Colleen articulately described what happened in her household and to her daughter who was a healthy and happy teenager until she developed anorexia. 

As has happened before and I know will continue to occur, we again were reminded of the different ways that eating disorders appear with or without prior observable behaviors such as anxiety and with or without the profile that many refer to including perfectionism, obsession to detail, high-functioning, self-criticism and other traits.

Following a much-needed break, we all regrouped and were introduced to Laura Discipio (ANAD), Chevese Turner (BEDA), and Doug Bunnell (formerly NEDA; also Renfrew).   Laura Collins set the stage for an open forum with several questions:

• Why can't we all just get along?
• Do parents have a special role in identifying and challenging ideas in the professional world?
• How can parent activists work with professional and patient activists?
• Whose shoulders do we stand on? (learning from long-time activists)
• Where the the new parent activists going to come from?

These are important questions and the interest shown by those present in developing responses and thinking about the future illustrated how dedicated everyone in the room was to setting the stage for next steps.  Concern was expressed about the evident (and historical) fragmentation of the Eating Disorder community and the desire to find common ground in order to effect change.  We acknowledged again that we do not have one specific way or path and that we need to work together and continue communication among the organizations.  Suggestions included exchanging board members, looking for opportunities to partner on projects, devoting ourselves to answering the needs of families and their loved ones.  We agreed that everything is complex, that there's much to learn about the treatment of eating disorders, and a lot we don't know.  Regarding the last point of the list,  we recognized that parent activists will come and go as their lives move on.  Many are suffering from PTSD and need a break before returning to add new energy to the work of F.E.A.S.T. and other organizations.    [Many remarks were made during this session; I do hope a transcript will become available in the near future so the suggestions can be prioritized and evaluated.]

This discussion could have continued for the rest of the day, I think.  It also strikes me, as one who used to lead discussions like this, that future meetings might include a white board or large pad of paper, easel and marker to quickly write down a brief summary of different points made.  A suggestion for next year?!

This intense hour was followed by business meetings to which symposium participants were invited.  These included an International Registry Project, a Medical Education Task Force, and Australian and UK Task Forces.  I hope progress reports will be issued.  I was particularly interested in the Medical Education Task Force but needed to take care of some personal business and could not attend.

Following lunch we were summoned by chimes to the ballroom at precisely 12:55 pm to be seated to welcome Dr. Thomas Insel, Director of the United States National Institute of Mental Health and our keynote speaker.

Dr. Insel began by discussing the National Institutes and Centers of which there are 22, all funded by our Federal Government.  Their charge is to support research for all medically causes illnesses; $31 billion of taxpayer funds are invested annually.  The National Institute of Mental Health focuses on the research and SAMHSA provides the services.  Specifically,the mission of NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.  I've provided links here to both organizations since a better understanding of their role and mission will guide those of us who need to know to whom to go for what.

Just going to the responsibilities of the Office of the Director is an eye-opening experience! And the link to the current state of eating disorders is also interesting.  Many of Dr. Insel's comments can be found on these links as well as in his blog.  Dr. Insel's recent essay titled No Health Without Mental Health is especially poignant and refers to the Patient Protection and Affordable Care Act discussed yesterday by Jeanine Cogan of the Eating Disorder Coalition.  Brain Development is his latest topic.

Having highlighted many document that provide the information Dr. Insel drew upon during his talk, I'll list some of his points I found salient to where we're going.  He noted,

We are on the cusp of a major revolution in the understanding of mental illness and specifically of illnesses such as eating disorders, schizophrenia, bipolar disorder and autism.  These are biologically based brain disorders.

One might refer to brain disorders as circuit or functional problems; an arrhythmia of the brain.

These are developmental disorders, as well.  We need to study and get a better understanding of what happens in the brain when a person develops one of these disorders especially since these disorders predominantly begin in young people with identifiable onset as early as 14 and 75 percent by the age of 24.  Since these disorders appear while a young person's brain is still developing, what does the change do to the brain?  to the normal development of the brain?

Other illnesses progress along trajectories.  Often, the symptoms we observe are the last things we know about as the brain continues to adapt until a severe stage of the disease emerges.  Clearly, early intervention will yield the best outcome.  For example, in schizophrenia most boys develop the presence of psychosis by the age of 19; girls about the age of 21-22.  Psychosis is a late stage. 

Are there similar trajectories for eating disorders?  Are there identifiable cognitive changes?  biomarkers? risks that one can highlight and address?  (Interestingly, a news item today notes Computer analysis of brain scans could help predict how serious or long term a psychotic patient's illness may become and help doctors make more accurate decisions about how best to treat them, researchers said on Monday.  In a study in the journal Psychological Medicine, scientists from King's College London's Institute of Psychiatry and University College London's computer science department found that using computer algorithms to analyze MRI (magnetic resonance imaging) brain scans can predict a patient's outcome.  "This is the first step toward being able to use brain imaging to provide tangible benefit to patients affected by psychosis," said Paola Dazzan of King's, who co-led the study.)

The study of genomics and epigenomics will yield breakthroughs within the next five years in the areas of diagnosis, treatment, and the preparation of the workforce.

Re diagnosis, previously mental illness was diagnosed by consensus.  We are moving towards gaining the  knowledge of what underlies those behaviors and symptoms.  An illustration of advances made in the field of medicine includes the fact that there are now six types of breast cancer, all treated differently.  Antibodies are developed as early as the age of 2 that lead to diabetes later on.

Believes that there may be a wide spectrum of eating disorders for which different kinds of treatment may be necessary.

Frankly, I was delighted by this observation coming from Dr. Insel since I speculated about this on my blog a few months ago reflecting on scientific knowledge provided to me by Martie Fankhauser, a neuropsychiatric pharmacist  who I consulted when I wanted to learn more about the brain from a neurochemical point of view.  Since there has been no new medication for many years to treat ED, non-medication therapy is really important.  [Note that the current estimate to develop a new drug is $1 billion.]

Lock and Le Grange have demonstrated that one can turn an eating disorder on its head using FBT.  Families are part of the solution, for sure.  Fifty percent of those who use their method recover in one year; what about the other 50 percent.  Can this be scaled up in a larger study to understand why? 

Re training - many in the field of eating disorders do not understand the concept of evidence-based treatment nor is their training scientifically based.  Change must happen.  Retraining must occur.  Perhaps an entirely new discipline in medicine will develop related to brain disorders - Clinical Neuroscience, for example.  Required re-accreditation in the field of eating disorders may be a possibility.  There is a general lack of understanding of the severity of these diseases.  Expertise is needed in the training of patients to cognitively override the diseases of eating disorders.  

Dr.Insel closed his presentation by noting that although the field has grown tremendously, much remains unknown.  [Some were able to capture his talk thanks to the live videostreaming that occurred during the entire conference. At least one section is reproduced on the Around the Dinner Table website.]

[While trawling the internet today - 12/6/2011 - I came across this vimeo thanks to the provision of it to the public by Jane Cawley.  Here Dr. Insel notes several of the points he touched on in his talk.]

Dr. Julie O'Toole, MD, founder and medical director of the Kartini Clinic, author of Give Food a Chance and a member of the F.E.A.S.T. Professional Advisory Panel moderated a panel brought together to determine where parents want the eating disorder world to go.  Dr. Insel was joined by Jeanine Cogan (EDC), Susan Ringwood (BEAT), Stephanie Bauer (Academy for Eating Disorders), and Dr. Richard Kreipe (AAP, Professor of Pediatrics and Adolescent Medicine).

Question:  How do we convey the severity of this disease without highlighting the usual sensationalistic photos and descriptions?

• Having data and stories of patients and family members.
• We need a big media push emphasizing eating disorders as a public health issue
• Our common task is to get people healthy first and foremost
• The field must partner with parents and listen to parental concerns.
• Keep the best interest of the child/young adult/adult in mind.

What other steps can be taken?

• Create a Consensus Panel 
• Develop Criteria for a Center of Excellence
• Study Sibling Risk
• Need scientific agency media push
• Train more pediatricians/adolescent specialists
• Distribute the revised AED booklet as widely as possible
• Disseminate techniques, knowledge and methods to parents

This discussion evolved into somewhat of a free-for-all and many comments were offered.  The transcript will undoubtedly add much value to the final report on the symposium.

A highlight of the afternoon was the announcement by the Board of a new "Magic Plate Award."  Laura Collins was surprised and very touched to be the first recipient.

Following another break and the raffle winner announcements (books and manuals donated by Gurze Books), a surprising number of people (given the late hour and travel requirements of many attending the conference) gathered in a smaller room to hear the stories of four recovered people who answered questions about their experiences including what helped and what didn't.  Carrie Arnold, Olympia Collins, Katie Cullinane, and June Alexander shared much about their lives when they were fighting eating disorders and offered solutions towards recovery based on what worked for them.  Questions ranged from family relationships to negotiating college education as well as treatment.  Each presented a different journey, a helpful offering towards understanding the variability of eating disorders.

I needed to leave early to join my son for dinner at Union Station.  He traveled by train down from New York City to spend some time with me - a wonderful surprise.

I look forward to next year's conference and applaud Laura Collins and other F.E.A.S.T. organizers who put together an educational and progressive experience.  I've never attended a conference quite like this before and am sure that much will evolve as a result of the discussions - formal and informal - that occurred.

Report - Day One -The First Annual F.E.A.S.T. Symposium: The Map Ahead - November 3-4, 2011

Earlier this year I received a notice that the F.E.A.S.T. community would be hosting a 2-day conference in Alexandria, Virginia.  I also knew, because I'd received several emails, that the National Eating Disorder Association would be hosting a conference in Los Angeles the month before.  What to do?  I could not attend both; I had other plans for October but not that weekend; and I had been a staunch supporter of Laura Collins since I first encountered her book Eating with Your Anorexic - How My Child Recovered Through Family-Based Treatment and Yours Can Too published in 2005, the year my daughter, slowly declining since 2002 after she relapsed, careened towards death and needed intensive treatment.

My thought was that once she was released from treatment, she could live with us and I would try to use the principles of the book and the other references.  My daughter was in her early thirties by then, an adult, and determined to do things on her own.  The "parentectomy" encouraged by the treatment center was successful and my hopes of transitioning her for a few months went by the wayside.

I decided to go to Alexandria, Virginia since I had attended the NEDA Convention just a year ago,  to meet, hopefully, many of the parents who I'd met on Something Fishy/Around the Dinner Table and especially, Laura, with whom I had been corresponding off and on for awhile.

I was intrigued by the purpose of the Symposium, too:

Moving forward from a history of being blamed and marginalized, families will collaborate with the scientific community to re-write the map of options and actions for families.  A new era of science-based, family inclusive, and truly optimistic eating disorder treatment begins now.

I've decided to take the agenda that we were given and use it to describe my personal journey and my "take-aways" through the next few days, starting with Wednesday night at dinner.

The dinners at the end of the day deserve a special mention.  As my son rightly has noted, I'm more of an introvert than an extrovert - perhaps somewhere in the middle.  So, I have have found it difficult to plop myself down in the middle of an event and easily connect with people.  I've been working on this all my life but it's still not easy for me.  As well, my sensitivity level is such that after awhile too many people and too much noise leads me to escape for awhile to regroup.  Last year at the NEDA Conference I often found myself adrift and still very much overwhelmed by my daughter's severe illness.  Attempting to connect was hard and there weren't to my way of thinking opportunities to do that after a long day.  And, besides, truthfully,  I was really tired even before I got there but eager to learn as much as I could.  As my blog after that event illustrates, I did learn a lot and became a major supporter of NEDA.

This year, just knowing that there would be an organized dinner at which I could just show up and sit next to someone, helped me a lot.  I joined a large group the first night at a "George Washington ate here" place - Gadsby's Tavern and walked there with a couple - parents - from Michigan and a pediatrician from N. California.  A great way to get the evening started.  Then I sat with them at the table, too.  We had a good time!

So back to the beginning.......

The conference was at the Holiday Inn in Old Town Alexandria, Virginia.  I obtained lodging there.  A grocery store was across the street where I purchased a few things I like to have that I don't want to haul in my suitcase.  The facilities worked well - the large dining room (where we enjoyed lunch each day) was separate from the large main meeting room.  There were break-out rooms along the corridor with the corridor and side corridor being wide enough to provide room for participants as well as snack tables, beverages, the daily morning buffet breakfast, and the information/registration table.  My room was large and comfortable and was on an upper floor, something I appreciate when traveling by myself.  The entire hotel is non-smoking, another plus.  A USA Today appeared at the door each weekday morning and  The Financial Times was available in the lobby on Saturday morning when I left early for the airport.  Incidentally, the latter is new to me and I loved the variety of articles.  I finally got around to reading USA Today in the evening right before bed.

Thursday morning breakfast was served beginning at 7 a.m. and Laura Collins, F.E.A.S.T. Executive Director, was introduced by her daughter to start the program at 8:30 a.m.  I felt that Laura's opening remarks drew us all together and laid out the plan for the conference and our collaboration.  I noticed early on that Dr. Doug Bunnell, past President of  NEDA and a charter member of the Academy for Eating Disorders was there - a plus for the idea of collaboration, too.

A highlight of any conference (to me) is the coordination of the introduction of speakers and transition from one speaker to another.  So well done!  Having been a member of Toastmasters for awhile, I learned that this aspect and skill are very important to set the professional tone.  Carrie Arnold and Stephanie Milstein, PhD, served as the Masters of Ceremony team, coordinating the hand-off of speakers for two days.  Carrie is a writer, author - Running on Empty and Next to Nothing,   and blogger (ED-Bites.com) in recovery from anorexia.  Stephanie is a doctoral level clinical psychologist licensed in the state of Michigan.

I certainly cannot report everything stated; however, I will provide some of the takeaways that stuck with me. It's my understanding that information presented at the conference will be posted on the website at a later time.

I gathered from the two-day schedule that we would first be reminded of where we are in terms of what's come before and what is happening now.  We'd also be alerted to what to look for and what to set aside.  From there, thanks to Ruth Sullivan, we'd get a look into another activist's method for gaining traction and learn about current efforts.

The second day we'd move quickly into experiences and what has worked, build on the conversations that had been going on for more than twenty-four hours at the conference as well as those outside involving all the organizations having to do with eating disorders, and also start to look forward using the questions provided including "where are the new parent activists going to come from?"  From there we'd get some guidelines, and then hear from Dr. Thomas Insel, director of NIMH, who would summarize and give us a heads up on where research is headed.  The question and answer period to follow was designed to provide the panelists here represented by the acronyms of their organizations (NIMH, EDC, BEAT, AED, and the AAP) with our concerns as parents and to obtain their feedback.

Finally, we were to be given the opportunity to hear from four people in recovery from the United States, the UK, and Australia.  A rather wonderful way to wrap it up.

The first speaker was Dr. James Lock, a professor of Child Psychiatry and Pediatrics in the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine where he also serves as Director of the Eating Disorder Program for Children and Adolescents.  He is co-author with Daniel Le Grange of the important book, Help Your Teenager Beat an Eating Disorder.  Their work has changed how eating disorders are treated. His research includes 4 current NIH funded projects and his recent research focuses on integrating treatment research with neurosciences in eating disorders.

His presentation, titled Rocky Terrain: Challenging Ideas About How Professionals Look at Families began with a photo of a pile of rocks.  He steered the direction of the conference towards better understanding of why many in the Eating Disorder Treatment Field use outdated methods (they were taught that way and find it difficult if not even terrifying to change what they are so invested in) and then on towards how to encourage change.  He reminded the audience of the original opinions about autism and schizophrenia and eating disorders, citing several well-known names whose theories are no longer mainstream.  He also reminded us that medicine is a "practical art" and used Greek mythology imagery to discuss the old way love affair with etiology that eventually crashed on the shores.  He reminded us, too, that not everyone responds to the same kind of therapy and expressed concern about the insular quality of treatment centers.

This reminder was an underlying theme that was repeated throughout the conference.

I connected with his list of characteristics of a good parent in a crisis situation:  enmeshed, rigid, anxious, over-involved.  As he stated, when a child is ill, why not?  He also referred to a study that looked at parents of children who were cancer survivors and found many suffered from PTSD even ten years later!

Becky Henry, author, speaker and coach and member of the F.E.A.S.T. Board of Directors moderated a question and answer period involving those present with Dr. Locke.  Some of the highlights I grasped  included:

His suggestion that parents remember a therapist may have been taught in the "old way" and need to be approached with the initial question, "Do you know about Family-Based Therapy?"  If amenable to hearing about the technique, share information and get a sense of what might be next.  If not, move on.

To the question of when to start therapy after diagnosis, Dr. Lock referred to the responses of the patients themselves:  1/3 wanted to work; the other 2/3 were not ready yet.  The conceptualization has a lot to do with the reaction of the 1/3 who said they were ready to work, he said, and when healthy behaviors are disrupted for a long time, the individuals take longer to shift back to healthy behaviors.  He said art therapy was okay but otherwise to follow the suggestions in their book and manual at the beginning.

Re underlying traits, acknowledging that some do not fit the profile, he said there is a continuum and that anorexia can exacerbate these such as anxiety but for others, not at all.

Re boys with eating disorders - he remarked in his experience that although the frequency of illness may be less, the personality and behaviors are similar to those of girls.  He said his studies were the first to include boys and noted that the content of an assessment for boys and men needs to improve; a thorough and in-depth study is needed.

Following the break, Cynthia M. Bulik, PhD, author of the book Crave (see my review elsewhere on this blog), and Director of the University of North Carolina Eating Disorder Center, concentrated on the avoidance of pseudoscience and misinformation.

She underscored the complexity of eating disorders and reminded us that a cure will not be simple; genetic and environmental information blend in unforeseeable ways. She advised us to avoid blame and sensationalism, recommended Carrie Arnold's blog (ED-bites.com), and emphasized again that "no one shoe fits all".  This attitude is important, especially for those fighting an ED for whom treatment did not work (including FBT).  She said the emphasis on only one way can lead to what she called evidence-based guilt on the part of the patient.  In other words patients can be overwhelmed by guilt when they are repeatedly told that x treatment works and yet can see for themselves in their own experience that it does not.  The no one shoe fits all information can also help parents help their children look for something else rather than just give up.  Bulik also reminded all of us that we mustn't let desperation interfere with our critical thinking as we examine information presented to us.

Next up was Dr. Walter Kaye, Director of the University of California, San Diego Medical Center Eating Disorder Treatment and Research Program.  Building on what Dr. Bulik had said, he noted that to date our evidence base is limited; a lot of research involving more participants needs to be done.  In other words, currently there is little long-term outcome data.  This will change as more funding for such research becomes available and our work is to agitate for that funding.

Dr. Kaye briefly summarized what is known in the fields of genetics, biology and traits.  He noted that 50 to 70 percent of those who develop eating disorders recover by their mid-twenties.  Why?  He repeated that we do not have enough data on the course of the illness to answer that question.  We do know that some people fit a profile; others do not and that traits continue after the eating disorder is gone that need to be addressed.

Dr. Kaye drew attention to the state of programs for the treatment of eating disorders.  He suggested that programs need to provide more data to illustrate that their approach can work (if the materials say so) rather than just publish blanket statements about their success.  He said in our search for a program we need to know who is involved in the direct care of patients and especially the time they've spent in training, their expertise, their skills and direct experience with those with eating disorders.  As an aside, he observed many sites will mention they have a staff but will not provide a list of who's currently on the staff, whether they are full time or part time, and what their credentials and background are.  He emphasized the importance of staff training in the facility's environment. We, he said, should be able to contact the program and evaluate the owner's expertise in the field, as well.

We, he said, should look for constructive skill training with real life applications and preparation for the patients.

Dr. Kaye summarized the need for data, better knowledge of genetics and of behavioral wiring, improved treatments, outcome studies and Centers of Excellence which provide intensive internships in those improved and evidence-based treatment programs.  We all should call for the intensive re-training of all those involved in the treatment of eating disorders.  He repeated that currently we have what he termed terrible longitudinal data and expressed the hope that with funding such as he has now received, he will be able to add to that data.

In closing, Dr. Kaye announced that he had received funding to conduct brain imaging studies on a cohort of those in recovery between the ages of 18 and 45, who are not on any medication, and for women those who have menstrual cycles.  The funds will pay for travel to his research center and expenses while there.  Here is a link for more information about the study and eligibility.

After a welcomed break for lunch following an intensive morning, we returned to hear from Dr. Ruth Sullivan and her summary of the history of the organization that she helped found - the Autism Society of America - and what we, as parent activists, might take away to implement in order to gain traction.  This link to an interview provides a lot of the information we gained yet for those present her personal spin and sense of humor brought the history of the Autism movement to life.

Dr. Sullivan then joined Darcy Gruttadaro, Director of the NAMI Child and Adolescent Action Center, in a discussion moderated by Kitty Westin of the Emily Program.  Some of the points that were highlighted in the discussion included:

• work to avoid infighting
• define common ground
• take a stand
• obtain training through, e.g., the Eating Disorder Coalition on how to influence Congress and other federal agencies
• contact state and national legislators
• ask for what you want and work with other ED organizations to say it in the same way
• involve celebrities (Dustin Hoffman, Rainman (autism) and Glenn Close, Bring Change to Mind
• develop a forceful and attention getting PSA
• continue to research the data and the science
• demand better quality of care
• invite legislators to meetings, to breakfast
• work to agree to disagree and still talk
• respect the dignity of others

Re the PSA, I was quite taken with the suggestion to develop a poster/an ad/a PSA using the photo of a young person apparently in terrific health coupled with the words, "this is the face of anorexia".  As we learned during day two, there is a theory that eating disorders like other developmental disorders first begin below the surface, so to speak, and that the actual behaviors of the disease itself indicate a late stage in this disease.  This poster would speak to that fact and experts might want to work on what the poster might say.

Wonderful activists Jeanine Cogan, PhD, and Kathleen MacDonald, of the Eating Disorder Coalition came to the microphone and continued the discussion, specifically geared towards working with legislators.  They highlighted the F.R.E.E.D. Act and its potential far-reaching effects on policy and practice in this country including, for example, the establishment of Centers of Excellence.  They both emphasized the importance of the stories of those affected by eating disorders and gave examples of the EDC's effectiveness to date.  They encouraged those attending to participate in lobbying at the Capitol.

We closed out the day with the opportunity to attend one of four offerings in Activist Training:  Government/Policy Change; Traditional Media and Public Speaking; Virtual Media; and Online Social Networking.  I chose to attend Carrie Arnold's group to discuss Virtual Media since I've been enjoying working on my blog and am wondering how I might improve it.  Carrie focused first on on-line news-sites and the need for new information all the time that is presented in an exciting, edgy and sometimes but not always negative (sensationalistic) way.  She encouraged those of us who visit such sites to click on "like" if we do because the number of hits influence the direction of future articles (as well as bring in advertising income) and to not share a story if we disagree with it.  Carrie then outlined some poinst to know about blogging, using the history of her site as an example.  She reminded those present that the information becomes archived forever on the internet.  She advised using pseudonyms if one is concerned about privacy and she gave us tips about how to gain more information about a subject in the blogging and twitter world.

After resting up, I joined quite a crowd at the Bilbo Baggins restaurant where we commandeered a large room and had a raucous but very good time.  I sat with a new group of folks and was fortunate to meet several moms whose names were familiar to me on Around the Dinner Table and to sit next to a woman in her twenties who, after battling anorexia for quite some time, established recovery by researching the Around the Dinner Table Forum and extracting menu and food options to give herself the structure she needed until she re-nourished herself and moved on.

I was glad to get to bed shortly after that and enjoyed another good night's rest in preparation for the day ahead.