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.

A Description of Our Family Member's and Our Experience - 2016 update

[April 2016]

[This piece is periodically updated as more information becomes available.  The 2011 version was my presentation to a group of health care professionals.  A later version was my presentation during a lobby day in 2013 in Phoenix for State legislators.]


In 2011 I was asked to present "my story" at a meeting of the local chapter of the IAEDP, one of the eating disorder associations, so the care providers present (therapists, nutritionists, residential program folks, etc.) could hear my story along with the stories of two others, as well.  We were limited to about 15-20 minutes if I recall correctly.  Sometimes I wish I could also hear my family member's (FM) story for I know that I only know the tip of the iceberg of her experience(s), many of which I know have been gut-wrenching in all senses of that word.   

Yet FM's is the journey that brought me to change direction of this blog.  FM's journey also led me to dig deep into my self some more and to learn how to respond better to the situation and to her needs.

I am now the in-my-seventies family member of and firm advocate for a beloved person who has been fighting bulimia/anorexia for more than 27 years.  FM began her fight in her mid teens although in retrospect there were signs of picky eating many years before.    I intend to talk here about my experiences in learning how to navigate the system here in Tucson to help my FM obtain assistance as well as offer suggestions for next steps.

As I have written elsewhere on this blog, I fought bulimia for about 15 years until I decided I was sick and tired of being sick and tired.  I quit about 40 years ago and have been in recovery - an ongoing process.
  

My family has a history of depression, eating disorders/disordered eating, anxiety disorders, autism spectrum disorders and even suicide.  I did not know these details when my FM first came to me for help in the late 1980’s.   She told me she had begun purging at the suggestion of a friend in order to lose weight (she had been teased) and had become hooked into it, so much so that she lost weight and descended into anorexia, as well.  I have since learned a lot more about what happened to her around that time and in her college years as she has gradually opened up to me.   

Bottom line?  The propensity for this disorder runs in our extended family but I didn’t comprehend or understand this when her journey began or even mine.  I was told then  and and had no reason not to believe that one month of residential treatment was sufficient for her to get into recovery.  I hoped that was true because I didn't want her to continue as I had for so many years.  As I later learned, a month is not enough..... for anyone.  Now I strongly recommend 6 months, especially for those for whom Family Based Therapy at home does not work.

FM did receive additional outpatient therapy over the next few years from a variety of therapists and then, as far as we could tell, she was in recovery.  Her weight appeared stable; she looked great, actually.   Her eating remained disordered but she told us she was no longer purging.

I have come to firmly believe that ED’s can become coping mechanisms gone awry (I know not everyone fits this profile), are  genetically based biological brain disorders and even linked to other addictive behaviors as well as brain disorders like anxiety thanks to extensive research  of many people who are devoting their lives to the study of eating disorders.  I also now understand that I and so many other parents didn’t cause this.

[Interesting that there now exists (May 2015) a document titled The Nine Truths About Eating Disorders and many of my beliefs are included in that document.]  

I have also learned that our family environment and learned behavior from our own family experiences can provide a climate that may need to be modified  on behalf of our children who have been diagnosed so that the family can become supportive of their need to get into recovery.    

I have learned better ways of communicating thanks to the wonderful work of Dr. Xavier Amador who developed the theory of LEAP and wrote about it in his book, I Am Not Sick, I Don’t Need Help as well as a terrific exercise based on the book The Five Love Languages by Gary Chapman.   I wrote about this communication method and this exercise in an essay about communication on my blog.  And, I learned about the success of the Maudsley Method that encourages refeeding at home coupled with Family Based Therapy, otherwise known as FBT.  I first learned about this method after I discovered Laura Collins's book Eating with Your Anorexic on the shelf in the University of Arizona bookstore.

In the early days we parents turn to therapists and other practitioners in the field of eating disorders – relied on them, actually --  to help our offspring get on the path to recovery.   I also have believed for a long time that FM’s recovery depends on a team effort that includes family members.  And, as Dr. Janet Treasure in England and others are helping the profession to understand, this disease turns a family and its members upside down and inside out. 

By the time we get to therapists with our loved one, many of us are frantic with worry.  Not only that, but our family dynamics seem to be abnormal because everything and everyone is in disarray.  For example, there have been times when I thought I would die of sadness and pain because of my FM’s illness and my seeming inability to do anything to help her.  I was labeled overly enmeshed.  How could I not be?  How could anyone not be?  Many parents develop Post-Traumatic Stress Disorder.  I certainly did.

The team approach/family based therapy hardly existed as recently as 2004.   That’s when FM descended again further into her own hell, finally cried out for help from us, and we launched a concerted effort to help her in any way we could with what we knew at the time, which wasn’t much.  Thus began a series of several residential treatments and many hospitalizations, one occurring a few years ago and lasting about six months of in-patient treatment -- at her request and with her initiative – a major step forward.  A more recent placement at the same location lasted shortest of the lot (less than a couple of weeks) for she was re-admitted only to rebel (as many with ED do) and be discharged for being non-compliant.  The facility has since indicated they are unable to treat her.  What in the world can be done when this barrier is erected?  Just give up and let the person die?  No.  Not on my watch. 

Support for the care-er was non-existent in 2004 when my family member first went into treatment at a local well-known facility.  The family, as many of you know and perhaps learned during your training, was considered for many years and still by many to be the incubator for eating disorders, the mother being especially culpable.  This is a myth.  In fact, FM emerged from the first long-term residential experience with the conviction that pretty much everything was all my fault.  That facility has since re-examined all of its theories and practices to involve family members more and to work with them. However, after that first experience with Family Week, I lived under a cloud of guilt and blame until several things happened over the next two years.

 

The first was that two independent psychiatrists diagnosed FM with a co-occurring mental illness and emphasized, as well, a present and overwhelming depression and anxiety disorder.  What I had been suspecting for years – since FM's teens, actually, was finally being understood.  Not only that  but I did not have access to the same earlier diagnosis, unfortunately.  [I learned this years later in an authorized two-way discussion with the therapist who had worked with FM in 2004.]  Whether I could have done something or not, I do not know.  The diagnosis then was avoided by many in the field and believed to be impossible to change.

In 2007 thought I no longer needed to feel weird each time I spoke up and asked, “don’t you see something else? Something isn’t right. Please spend time with FM.”   In fact, more than 65 percent of people who develop eating disorders have a pre-existing anxiety disorder.  Since characteristics of the Autism Spectrum run in our family, that may be a factor, as well.

The second was that a friend of mine suggested I attend a Family to Family several week course offered by the local chapter of the National Alliance on Mental Illness, better known as NAMI.  This course provided me with phone numbers, information about what to do in a crisis, a better understanding of the brain and of mental illness, what resources were available in our community including a wonderful local resource called SAMHC, and an understanding parent group to which I came and they came for support.

The knowledge I gained was amazing and the frustration I heard from other parents who attended was amazing, too.  And, I know not too much has changed because I continue to periodically sit in waiting rooms.  If anything, because of the State of Arizona cutbacks, the situation is even worse because many people are now taking generics rather than the original medications that are critical for their state of mental health... or no longer are taking any medications at all because they have been dropped from the AHCCCS roles and cannot afford the cost.  Often, these generics aren't the same as the original medication.  My doctor explained that the drug companies that make the generics have the leeway of anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill.  There have been draconian funding cuts to the behavioral health agencies that provide services, as well, so that more of the slack has had to be addressed by our local police and fire departments.  Fortunately we now have something called the Crisis Response Center.  Unfortunately, often these same people are stabilized and released back on the street again with little support to continue their treatment on the outside, especially those who have been mired in their illnesses for some time.

The third was that I joined Al-Anon.  I was unable to find an ED support group for family members of those with eating disorders.  This group and the people on  (that no longer exists, I believe) “Something Fishy” listserv literally saved my life.  Something Fishy disbanded.  However, F.E.A.S.T. also maintains a site called Around the Dinner Table.  We shared and continue to share our experience, our strength and our hope.  Not everything applies but a lot does.  As the saying goes, “Take what you need, and leave the rest.”

And fourth, I was referred to an excellent therapist who took me on as her patient and has continued to work with me so I could/can develop tools and behaviors that  help me in my role as advocate.  Her guidance also helped me to replace my ingrained at times unavoidable - given my FM's physical health - and hysterical involvement with healthier boundaries. 

After my FM returned to her destructive behaviors after one four-month period of treatment and before three more recent treatments (the most recent being a full year), I despaired and my therapist referred me to a psychiatrist who interviewed me at length, has been following me for more than three years, and who prescribed two medications (one of which I no longer need to take) that with our joint tweaking has helped me deal with this ongoing and other situations within my family, including the increasing ill health of my mother and her eventual death in 2009 and its aftermath.

Prior to pulling all of these resources together, I would go to bed at night and feel my heart beating raggedly in my chest.  I wasn’t sleeping well.  I was terrified that at any time I would receive a call that my FM had died.  Truthfully, I still know that this phone call or visit might happen.  FM insisted on living separately after the first two-month residential treatment experience in 2005 - the parentectomy thing.  For a time, every time I heard a fire engine or saw an ambulance, knowing that my FM had called these for help on many occasions, I would think the worst.  I had been overwhelmed watching my FM’s sabotage of her self.  My marriage was suffering.  I knew I had to do something. And I learned that, like many people in a similar situation, I was suffering from post-traumatic stress disorder and I needed to get help myself.

I began to read and learn.  I read all the materials I could on eating disorders and mental illness.   I acquainted myself with the work and online materials of the National Eating Disorders Association, NEDA.  I began to write about my experiences in dealing with the system here.  I continue to keep a log of everything including all medical records and emails.   Later I became aware of the on-line group F.E.A.S.T. 

For those family members reading here, because of HIPAA laws, often those who care for our loved ones never receive critical information from previous experiences/hospitalizations including, for example, the names of medications that are contraindicated or don’t work.  I began to feel comfortable enough with my experience to share it with other's  – both my mistakes and our successes. 
 

Because FM is an adult, I wrote an essay on my blog that includes steps one can take if one is the parent of an adult with an eating disorder.

This journey has been awful, not only for me but also for my family member.

Beginning in August 2007 after learning about my family member's additional diagnoses, I needed to initiate another Title 36 episode because no one else who was knowledgeable about the situation would.  The only other time one had been initiated was by two doctors at the hospital to which she was transferred from the first treatment facility in 2004  She had been dismissed (ejected is a better word) from treatment by an ED residential facility for non-compliance (so common, especially for the first month or two in treatment). I began to live in my car (so it seemed) for hours each day taking FM at her determined to get well request to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs .... etc. in order to be admitted to treatment again.  It was not safe for FM to drive herself.

 

I spent a chunk of many days in the waiting room of one of the behavioral health providers here learning by observing, while I waited, about others' experiences.  There were times when I could have cried.  So many times, people would come to the facility having had to take at least two buses to get there, only to arrive later than their appointment was scheduled and told to reschedule.  Family members and/or friends would take precious time off to get their family member to the facility to avoid missing an appointment.  Others, because of their mental illness, would become confused and lacking an advocate would forget what it was they were to do next or forgot to have their prescription renewed and had to wait for an appointment to get more.  Sometimes they need to wait until the medication is approved by the carrier.  What then?  What about withdrawal symptoms from missed doses?  Some people who came in were belligerent and upset others who were waiting their turn.  I witnessed so much.

I also lived the frustration and sadness of trying to help FM navigate the system only to see FM fall through the cracks and almost die -- at least four times -- because although she was and continues to be officially Seriously Mentally Ill (SMI) and assigned to a behavioral health agency, due to high turnover of staff at that time no one was keeping tabs or because eating disorders are still totally misunderstood by many or because I did not have the right to learn of missed appointments (HIPAA) and no one from the agency followed up or because, characteristic of her illness, she refused to participate or seek treatment.

Thanks to my NAMI class I learned who to call and where to go.  I was present at meetings whenever I could be and was allowed to be and took voluminous notes.   It’s really important that family members ask for their loved one’s consent to do this.  FM gave consent.  Also know, however, that even without consent it is legal and okay to report changes in behavior to your loved one’s doctors and therapist.  Parents are with their children far longer than the hour in the doctor’s or therapist’s office!  Some health care providers really do not like to be contacted but a short note will document the situation, something that may be important to refer to later.  Again, refer to that truths document.  

I continue to worry about those who do not have advocates.  I wonder about those who show up at emergency rooms and are thrown out because they are disruptive when in fact they desperately need help and would not have gone there in the first place if they didn't (I know this happens; I saw it happen.  Parents need advocates.  So do adults.).  

I know there are still [2016] hospital staff here that simply do not understand eating disorders -- imagine sitting in a locked down area in the ER and having a doctor ask a person with an ED about their "regularity", hearing them say they are constipated, and then hearing the doctor offer a laxative!!!??  or watching as nurses administer a large dose of a medication that was contraindicated for FM (learned at the same hospital during a previous ER admission and in their records) only to send FM into an extreme panic attack (this is called a paradoxical effect)  that culminated in an escape from the ER with an IV still in place?  Note that even getting into the ER and staying there was a hugely scary undertaking for FM.  FM walked two miles home.  I had left the hospital earlier after being reassured that she would be spending the night there and was fourteen miles east of the hospital when I received a call from the hospital on my cellphone telling me that I was observed picking FM up after her escape.  As you might imagine, I was shocked by the false accusation, furious at the staff,  and I did not sleep well that night wondering where she was and how she was until she called me the next day.

Can you imagine sleeping on the floor overnight in a cubicle in a section of the ER in order to ensure that your loved one will be seen by a doctor and will remain there long enough to be evaluated?  Without resorting to Title 36 procedures in the first two years or so - actually not really being aware of what Title 36 offered, I did that and several other things until I realized I'd run out of options and the doctors on staff just didn't "get it".

I know things can be better because one hospital here stepped up to the situation and worked to understand what was needed.  The staff was wonderful.  Now that hospital's psychiatric ward has been closed and the hospital's related longer-term facility has also been closed due to  lack of funds.  Fortunately the Tucson area now has the Crisis Response Center, the centralized place for anyone in mental health crisis to go for help.

There was a behavioral health provider team (her team) in action here that went to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is difficult to obtain through the county system and as we know very expensive for the amount of time that should be spent in a facility to recover the lost “self” and the lost ability to feel hunger and/or fullness, among other issues.  Residential treatment for adults and even minors is not covered by many, many insurance companies and states nationwide.  This needs to change, too.  There is an Eating Disorder Coalition working in Washington, DC, to effect that change.  Read the most recent legislation update here.   NAMI is very active, as well, to obtain parity with coverage of other illnesses.

Take note:  there is precedent in the State of Arizona now of treatment arranged and paid for by a government agency for an adult.  There is a long-standing precedent for treatment paid for a child under the age of 19.  Private insurance companies should, in my opinion, follow suit.  Whether funding is available is, of course, another factor.

If the hospital I referred to and my family member's first formal team can learn and change, so can others.  But, it takes resources. The AED has published a booklet that can help.  Distribution is desperately needed.  [See list on the right side of my blog for a link to AED and directly to that booklet.]  

Freelance Science Writer Carrie Arnold recently completed a comprehensive book about ED titled Decoding Anorexia:  How Breakthroughs in Science Offer Hope for Eating Disorders.  This book could/should be required reading for all in medical school and further by all in the field who treat or might treat someone with an eating disorder.  This book is especially valuable to parents and to those adults with the illness who are determined to recover.

However, I realized that no matter how much I learned and understood, the bottom line was that FM, an adult, needed to come to the conclusion herself that she needed help and that she needed to ask for help. In fact, she does ask for help only to succumb to the effects of her brain disorder that sabotages what her "self" so desperately needs.

Unfortunately, the act of asking for help immediately characterizes her and others as not a "danger to self" and yet she and they are a danger to self because the (as I just wrote) this brain disorder sabotages what her "self" so desperately needs.


A few years back a respected member of the medical profession - a pediatrician - also succumbed to this disease.  A doctor.  Someone knowledgeable about the workings of the human body and brain.  Does not this tragedy indicate how deadly and distorting of reality this disease can be?

FM was officially declared Seriously Mentally Ill for the first time in early 2005 and was court-ordered into treatment as I wrote earlier, following Title 36 procedures instituted by wise doctors at the hospital to which FM was transferred from the first residential facility that ejected her after only a few days in late 2004 when she refused to accept treatment and follow procedures.  She became eligible for a variety of services.  Although she became and continues to be a client of a local behavioral health provider, at that time she slipped through the cracks and because of HIPAA laws, as I stated earlier, I was unaware of several things until a crisis developed.   

As well, because eating disorders were - actually, are -- still not well understood, assumptions regarding my daughter’s abilities and state of mind were incorrect and she received substandard care.   In other words, she could present herself as knowledgeable and “together” but, in fact, she could not sustain this state given her health, both physical and mental.

As I indicated above,  her behavioral health team continued to engage with her for her ongoing treatment.  Getting there took a lot of effort by all members of her team, including me.  I did not hesitated to speak up, provide materials, and advocate for her.  She has a different team now that operates under different circumstances.  

However, I learned early on that in spite of a court order that in this case was still in place, a family is often left to make decisions like petitioning again under Title 36 for involuntary evaluation.  Each time I have petitioned, I’ve wrestled with the decision knowing not only would this course of action infuriate her (and, of course, it did), it might also limit her possibilities later in life.  Yet, I believed, the step would save her from herself and hopefully save her life.  I also learned that in spite of petitioning and seeing red flags everywhere, it’s possible for a petition to be denied anyway.  Hers was dismissed at a critical time.   I experienced what it was like to come upon the results of a desperate act that I knew was coming (2009).  

As an important aside, please advise your client’s family members that they should not under any circumstances go alone to their loved ones place of residence when they suspect that something bad has happened.  Call 911 and explain the situation and ask for a welfare check.  Or meet the officer or team but wait outside.

Things became worse after that episode that was followed later by hospitalization when her weight and physical state had plummeted even further.  Imagine needing to call a lead person of the oversight organization personally to intervene to get your family member admitted to treatment in local facility and then finally hospitalized only to experience the horror of learning your daughter was treated incorrectly in the hospital, after one horrendous episode of electrolyte imbalance at a local residential facility that advertised itself to treat eating disorders, to the possible point of compete disability? 

This is a point that  bears repeating, especially if your loved ones binges and purges.  Her or his electrolytes can become terribly unbalanced and it's critical that the staff know that your loved one does binge and purge and that blood electrolytes are assessed.  Being provided with just intravenous saline could cause more harm; potassium may also be needed.

Here we are in the Spring of 2016 following one year of inpatient and 3 years of outpatient and FM's eating disorder is firmly entrenched.  Several recent visits to the ER of local hospitals have reminded me that some doctors still do not know enough to recognize, for example, the symptoms of binging and purging even when my FM (and I) have said that she has bulimia.  One of the more recent ER visit and subsequent hospitalization occurred because FM's electrolytes were 2.1 for potassium, 25 for sodium, and low calcium.  She was slurring her words upon arrival by ambulance because her brain was not functioning - a doctor assumed she was under the influence of something.  Only when the bloodwork came back shortly afterwards did the ER go into action and then they almost lost her because they gave her saline solution without potassium.  When her potassium fell further, they realized their error. She was subsequently admitted to the hospital but as has been the pattern, FM demanded to be released two days later.  A similar event occurred only a couple of weeks before at a different ER.  Both facilities have her records.  What's the problem?  For starters Arizona does not legally recognize eating disorders as illnesses to be treated and paid for by insurance.

After a year of merry-go-round of admissions to the crisis center, hospitalizations, and then discharges with nothing gained, I became my FM's guardian in hopes of effecting better treatment for her.  My FM has been in the hospital for almost five weeks.  I am so very grateful that she is being helped.  Plans are being put in place for next steps.  Her weight is gradually approaching enough for her to be thoughtful and have more insight.  But, she's not there yet.  Advocacy has continued to be my full-time occupation.

To wrap up,  I’m going change course and focus on what I wish would be available to every parent whose offspring starts to show signs of an eating disorder.  

Much is summarized in this letter addressed to the parent.

Second, I wish all family doctors and dentists would be trained to know how to detect an eating disorder and what to do about it including what tests should immediately be run.  This information is available in a booklet from the the American Academy for Eating Disorders . I recently received materials that I hope to distribute to local area hospitals.  There's legislation moving through at the national level to address this and other facets of treatment. The organization F.E.A.S.T. - Families Empowered and Supporting Treatment of Eating Disorders -  founded by Laura Collins and currently led by Leah Dean maintains similar information on its website.  The Anna Westin Act is making its way through Congress thanks to the growing support and initial introduction of the legislation by bipartisan legislators, the diligence of countless volunteers, parents, family members all spurred on by the Eating Disorders Coalition.

Third I was delighted to learn in 2010 that the IAEDP began a local chapter here because I believed its presence might speed things up.   Much work needs to be done. There needs to be a list of all qualified and up-to-date in eating disorder theory and practice, including Family Based Therapy, therapists, nutritionists, and psychiatrists.  This list should be available in doctor’s offices and at the least at local hospitals in the social worker’s offices, ER’s, and in school and college counseling offices.

Fourth, NAMI needs to incorporate information about eating disorders into its local efforts and programs.  NAMI need to focus on each state and to work with legislators in states that do not recognize eating disorders as treatable biologically-based mental illnesses (similar to OCD, bipolar disorder, borderline personality disorder [which isn't a personality disorder but rather an emotional regulation disorder] depression, and schizophrenia).  Arizona is one of them.  Those with anxiety disorders, BPD and other mental illness often develop eating disorders.  The two often exist together.  They needed to be treated at the same time.

Fifth, local educational institutions starting at the grade school level should have the NEDA  publications about coaching and for teachers in their counseling offices as well as in their sports departments.

In fact NEDA will send information upon request to any educational institution.  Here is the link to make that happen.  Scan down the page for information on how to do this.

Sixth, Tucson desperately need post-residential and post- in-hospital treatment housing for adults working on recovery.   I think the Haven here in Tucson provides a working model for something that could be developed.  I believe it’s critical to have support services in-house something along the lines of retirement communities but for younger folks whose capabilities are on a higher level, as are most of those with eating disorders.

Finally, we parents need compassion and understanding from the therapeutic community.  It’s frightening and disorienting to watch a healthy young person get trapped in a path towards death.  We need more parent support groups or the knowledge of the existence of parent support groups that meet at a convenient time and often.  I know one of us presenting here sponsors one.  There are guidelines through NEDA regarding how to start one and how to manage it.

Guest Post by Dr. Marilyn Heins - brain development/teaching good choices

After reading the following post in the Arizona Daily Star (11/6/2011 p E6), I contacted Dr. Marilyn Heins, a Tucson pediatrician, parent, grandparent and the founder of the website ParentKidsRight.com, and asked her if I could post her Parentip of the Week here. Her column today focuses first on brain development and her presentation makes this concept - which can be complicated for those without a scientific background - easier to understand and then on teaching good choices.  For those with children who also already may be exhibiting impulsive behavior, the tools may help.   She said yes! so here's her Parentip:

Why do parents of teens need to know about the prefrontal cortex of the brain?

The prefrontal cortex is the boss. It is the part of the brain that takes information from other parts of the brain so that we can make decisions. The executive function that we need to make decisions comprises planning, organization, working memory and control over the part of our brain that would lead us to do stupid or dangerous things if unchecked.

The frontal cortex is the thin covering of the brain. It is the part of the brain that evolved last and had to fold in on itself, creating many valleys in order to achieve the size it needed to do its job within the skull. The prefrontal cortex is just behind our forehead.

Brain development starts before birth. And we know that this magnificent organ, which makes us human, continues making connections as long as we live. Connections (synapses) are the the marvelous biological demonstration of the interaction between genes (nature) and the environment (nurture). It's not either nature or the environment that counts, it's both.

Brain development all through life consists of and depends on plasticity.

No, our brains are not made of plastic. Plasticity means that the brain has the ability to change neuron pathways based on new input from new experiences.

[To the theme of my blog, the above is an important point for those of us who must teach our children to let go of harmful behaviors such as binging and purging or not eating at all and to learn new behaviors.  This point illustrates in part why therapies such as cognitive behavioral therapy (CBT) and dialectical behavioral therapy (DBT) make a difference by helping our loved ones gain tools to help prevent a relapse.]

We used to think that brain growth ceased when physical growth did. Wrong!

As a matter of fact brain growth continues well into the 20's, which accounts for some of the puzzling aspects of teenage behavior.

When, oh when, can parents expect their teenager to develop a mature brain that can make wise choices? Alas, long after the teen years have passed, somewhere in mid-20's or even later.

So, what's a parent to do?

Start early to prepare your child for making good choices in this complex world.

Impart healthy values.

Be a dream-thrower:  talk together about what wonderful things your child might do one day - college and travel and creative or socially important work.

Take a stand against the consumeristic, oversexed media culture.

Expect the best from your child at school.

Encourage children and teens to take healthy risks in sports and challenge themseves to reach a personal best.

Give children and teens ways to practice being grownups by gradually assuming responsibility in the home.

Let your children help make family rules so they learn the correlation between responsibility and freedom.

Give your teen increasing tiny doses of freedom so he or she can make little decisions.  Tell them they will be "graded" and allowed bigger decisions later if they pass the course."

When Kids CANT Eat

After breakfast this morning, I had intended to start a blog post on the F.E.A.S.T. Eating Disorder Conference in Old Town Alexandria, Virginia held on November 3 and 4, 2011. I have just returned from the conference at which, because of the need for a model of activism, Dr. Ruth Sullivan , the first president of the Autism Society of America spoke. But, I was sidetracked....

I opened our Sunday newspaper - The Arizona Daily Star - here to Section B, for Tucson and Region, and at the top of a page the headline, "When kids can't eat, local nonprofit offers vital help" jumped off the page at me.

At first I thought the article might refer to those kids whose families do not have enough funds to feed them. But no, the article literally is about children - people - who "cannot eat without help."

So I read further........ "....up to 75 percent of children on the autism spectrum have food aversions."

Where's the footnote!?! Is this true? Is there perhaps a link to eating disorders here? I know it's been explored before by others. Some people have wondered about such a link. I know I have. The autism spectrum indeed runs in one side of our family. And so do eating disorders but in a different side. Coincidence or more? Note to self: need to check with the Autism Society on the statistic presented.

I also learned from the article that there's a "....new local nonprofit group [that] wants to help families with early intervention." The group is called Nourish. It has a website. There's also a link on the site to therapy for those with autism.

So, interesting. I am happy to see that such a group now exists on behalf of those families who cannot afford the help because they earn too much to be eligible for AHCCCS and not enough to buy insurance coverage.

And, it would be interesting to learn the techniques used by Nourish to help children eat a balanced, nutritious meal. These tools might help those parents who want to help their children with anorexia, for example, eat.