An Infographic - A Visual Tool - to grab the attention of the Medical Team

Background:  After getting nowhere for a year, as I brought my family member (FM) to the ER and/or a local Crisis Center to be admitted (but FM summarily was discharged multiple times over my objections as the  Court Appointed Legal Guardian) in my attempts to grab the attention of doctors/psychiatrists of a local psychiatric wing of a hospital/crisis center, and even after, a year ago next month, arranging a consultation for the psychiatrists with one of the world's foremost researchers on anorexia - and getting a rejection of the opportunity -, and while continuing to watch my family member's weight slowly drop to a red flag danger zone, I resorted this past Spring to something that my son taught me.

Infographic Visual Tool:  My son is an expert in the communication of information through Infographics and I have observed that these tools work quite well. I plotted my family member's weight over a year's time, beginning in June of 2018, and presented the resulting chart during a team meeting at the hospital in May of this year. 

I thought I would share this idea in case someone else needs a visual to drive home a point. I used Excel to develop the infographic, plotting weight on the vertical axis and dates on the horizontal axis over the previous year to date.  The infographic also includes a few recent admit and discharge data points. It's a powerful visual and I recently learned that the message provided by the infographic was written into the official medical record!!!  Perhaps this kind of information would also be useful to gain support from the individual's Insurance Company.

[Obviously other factors were taken into account when FM was finally admitted in May for a longer stay because her weight was frighteningly low (low 70's) but even then, the remark of the ER physician was "she is awfully thin" [pause for several exclamation points !!!!!!!] but she otherwise noted that all her labs came back normal (meaning electrolytes) and then said the recommendation was to discharge FM.  My response was, long story short, to say "...she is dying and she will die if you do that...."]

In summary, the infographic reflects FM was discharged more than a year ago with a weight of just under 100 pounds but as time went on into the summer, fall and winter, as has always been the case because she has never been fully in recovery, her weight dropped, came back up a little, dropped more, came back up a little, dropped significantly, etc., etc.  In May 2019, FM was discharged at her insistence (Anorexia took over) at a ridiculously low weight only to drop again enough in two weeks to be rehospitalized. FM was admitted for another almost three weeks but again, at her insistence at a weight that was at least 20 pounds under a reasonable goal based on so much documentation and the recommendation of her PCP, FM was discharged again.    The decline, unfortunately, as I write this, is repeating.

Closing:  I am so grateful to Dr. Bulik et al whose research results have recently been published in an article written by @Sumathi Reddy the Wall Street Journal titled "A New Genetic Explanation for Anorexia" (see link) including findings on the genetic metabolic and psychiatric links, as well as to others who continue to push for a stabilized (ie for several weeks if not months) weight before assuming a person is safely into a recovery phase allowing for outpatient treatment.  Maybe, someday, doctors will receive more than 1-5 hours on eating disorders during their medical training.

Severe and Enduring Eating Disorders - Another Look

Update:  August 28, 2019
In addition to adding a section on case management and a link to a Team Approach, I have also updated the HIPAA document.   This document explores elements of the full-range of possibilities.   I am attempting to keep this document parent/family oriented or even parent/family/patient oriented rather than clinician oriented.  Early on several adults diagnosed with eating disorders accessed my blog and remarked upon it.  This document is for them, as well.


Overview:  More attention is being paid to adults diagnosed with eating disorders who now are living with chronic illness.  This post takes a look at this development, relevant publications and our family's journey with the goal of providing information for others.

It should be noted that, in general, many with eating disorders whose illness becomes entrenched are also dealing with multiple diagnoses such as depression, anxiety, obsessive-compulsive disorder, bipolar disorder, and borderline personality disorder.   They may have turned to substance abuse and become addicted because no pill exists (yet) to stop the disease.   All aspects need to be treated concurrently.  They may have sought treatment at multiple residential treatment centers over the years and were discharged because they were determined to be non-compliant (one of the key behaviors known to occur in early treatment is rebellion and anger so non-compliance should be expected!) and therefore have given up on treatment, regarding themselves as failures.  They may have needed multiple visits to hospital emergency departments to address electrolyte imbalance or short term hospitalizations over many years to stabilize.  And, their insurance companies may have balked at further treatment expense and/or caused them to be discharged to a lower level too soon.  Or,  their inpatient doctors/psychiatrists have not utilized motivation techniques to persuade them to stay hospitalized and instead, the person demands to be discharged thereby potentially and usually losing the ground they gained while hospitalized.   As a consequence they have many times become poorly motivated, socially isolated, chronically ill, are filled with despair, lack trust that anything might work and have carried on this way for more than 10 or more years.

Anorexia carries the highest death rate of any mental illness.

Where the concept of SEED began:  Several years ago I came across a book authored by Dr. Paul Robinson titled Severe and Enduring Eating Disorder (SEED) - Management of Complex Presentations of Anorexia and Bulimia Nervosa (John Wiley and Sons, 2009).  Because my family member (referred to as FM) at that point had been struggling with anorexia subtype bulimia for about twenty years, I bought it.  FM had just completed yet another course of treatment (this time for more than six months!) and immediately, upon release at a weight, again, above FM's comfort level, stopped eating and over the following year returned to a dangerous pre-admission weight.  I was overwhelmed by despair but held on to the hope that something might be done to interfere with the insidious control of the eating disorder.  Few in the field were focusing on people with a severe long-term eating disorder; in fact, one might justifiably state that they were being neglected, and myths as well as misconceptions  about eating disorders continued to circulate.

Instead, and understandably so, the emphasis was and continues to be on early diagnosis and immediate treatment with the goal of returning the individual to a full, recovered life.  Yet, few understood what eating disorders were all about.

During a relatively short period of time since 2010-11, much has been accomplished in the fields of for example neurobiology, biology/genetics, nutrition and psychiatric care and a plethora of journal articles and books has been published, conferences for both researchers and parents/families/individuals have been held, the internet has helped to speed up the process of dissemination and many more individuals and their families have managed to overwhelm the disease process through early diagnosis and treatment including Family Based Treatment (FBT).

Robinson's book was an excellent first step and remarkably (in the sense of deserving high praise) contains detailed explanations and suggestions re how to treat people who have had the diagnosis of an eating disorder for a very long time.  Dr. Robinson notes that he was the person to coin the classification "Severe and Enduring Eating Disorder" or "SEED" in 2006.  He wrote (p 5) "We have two groups of patients therefore, the acutely ill young patient with a short history of Anorexia Nervosa and not much else and the chronically ill patient with a long history of Anorexia Nervosa with physical, psychological and social complications.  The acronym SEED applies only to the latter."

The Table of Contents partially explains this book's importance to the field and Robinson investigates the topics at length while using patient cases to illustrate his points.

1. Introduction
2. SEED, Psychiatric Considerations
3. Medical Aspects of SEED [this is comprehensive]
4. Social and Occupational Aspects of SEED
5. Family life with SEED
6. Care Programming in SEED [immensely valuable discussion re the role of case management]
7. A Pilot Case Series Using Qualitative and Quantitative Methods: Biological, Psychological and Social Outcome in Severe and Enduring Eating Disorder (Anorexia Nervosa)
8. A Comparison between SEED and Chronic Schizophrenia [to be clear, the point of this chapter is to "use the extensive experience gained in the development of the rehabilitation field in schizophrenia and begin to appy it to SEED" - a remarkable and important step to inspire hope, I think.]
9.  Research Ideas - [this chapter is amazing and includes long lists of ideas to look at related to each chapter discussion and includes a suggestion for a symposium, as well.  The section on care or Care Program Approach - CPA - is quite useful.]

Our Family's Experience:  In retrospect, FM finally had had the advantage of a multifaceted team [there is a link to a post about team composition and roles later in this post] from one of the mental health services here that addressed many of these points and wonderfully, at the same time, the team was  welcomed by the residential treatment centers (2009 and beyond except for the State hospital in 2012) at which FM was a patient so all could work together to overcome FM's already entrenched behaviors.  I wrote of my experiences and of the knowledge I had gained in posts here on my blog (and have continued to update them).

In 2015, after FM once in 2012 had been court ordered and placed for almost a year in the state hospital as a last gasp measure to literally keep FM alive and from which FM emerged having gained enough weight to take advantage of services but over the next two years and ongoing has been unwilling to do so, I came across the open access  editorial/article written by Drs. Stephen Touyz and Phillipa Hay titled "Severe and enduring anorexia nervosa (SE-AN): in search of a new paradigm" that appeared in the Journal of Eating Disorders (2015) 3:26.  The authors note, "We need to rethink our treatment strategies by drawing upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong with them'." 

I also attended a conference on eating disorders at UCSD in 2016  (also described in a post listed in the Index) that brought me up to date on much of the research being done and new avenues of therapy.  I shared much of this information with the lead doctor at the time (who was very knowledgeable about eating disorders) at University Medical Center Banner Behavioral Health South and with FM's mental health service psychiatrist, as well.

Since then, also in 2016, I took on the role of Court Appointed Legal Guardian with mental health authority on the advice of FM's team psychiatrist in order to help FM with FM's desire to sustain life and have worked closely with the psychiatrist and with FM's PCP in order to do that.  My previous post re Emergency Department visits reflects only part of this journey.  I have never lost the sense of hope.  This effort has been all-consuming yet from a carer perspective, I've also steadily sought the help of a therapist who has coached me to seek outside activities and to maintain healthy relationships with others including my husband, extended family, and friends.  Her assistance has been exemplary.  Here's a link to ideas for self-care.

FEAST SEED Focus:  Not one to give up, on March 17, 2019, I attended a one-day family members conference titled "Feast of Knowledge" scheduled by F.E.A.S.T. to follow the annual International Conference of Eating Disorders (ICED) held in New York City.  Several presenters at ICED came to provide summaries of their presentations.  During the discussion, the concept of severe and enduring eating disorders was discussed and I offered to initiate a discussion that will hopefully generate a usable body of knowledge - perhaps even a pamphlet - to help families whose loved one has struggled for a long time.  This project is now underway and I have contributed this post.  There hopefully will be a link to stories written by family members and those either in recovery or working towards recovery.  I am unable to participate in this project at this time because my family member again is losing ground because she again was discharged too soon at too low a weight.

Having read several papers, I am arbitrarily suggesting that a long time (enduring) be defined as more than 10 years of ongoing treatment.  Others suggest 7 years.  I began my blogging at the marker of 20 years in FM's case.  As is outlined in the first paper of Managing Severe and Enduring Anorexia Nervosa - A Clinician's Guide (see below for the reference) titled "What Do We Know About Severe and Enduring Anorexia?" by Anna C. Ciao, Erin C. Accurso, and Stephen A. Wonderlich, defining SE-AN or SE-ED continues to be an issue.

Blog Linked Resources re Anorexia in Adults:  Here are some resources with suggestions to continue that conversation building on what I have posted on my blog previously and learned as time has gone on (and provided links to above and in the Index of my Posts).   I recommend a look at:
First Steps if you suspect your loved one has an eating disorder;
Tips for Parents of Adults with an ED; and
Team Approach - A suggested way to keep recovery going. This provides the reader with suggestions for team members.
You may also find the post Financial: how/where to get help to pay for treatment helpful as well as the posts about a
recovery coach  and, importantly,
HIPAA and your right to call your loved one's treatment provider, ask to speak with her/him and state you would like to share what you believe is important information about your loved one.  More details are in the HIPAA document.

As I have noted on my blog, "This site is only for informational purposes.  Posts do not represent medical advice.  Readers should not base any personal medical decision on information posted on this site.  Any health concerns should be discussed with your personal physician, psychiatrist, or therapist."

Recently Dr. Jennifer L. Gaudiani published her book Sick Enough: A guide to the Medical Complications of Eating Disorders (Routledge, 2019).  From the book's cover:  "Patients with eating disorders frequently feel that they aren't "sick enough" to merit treatment, despite medical problems that are both measurable and unmeasurable.  They may struggle to accept rest, nutrition, and a team to help them move toward recovery.  Sick Enough offers patients, their families, and clinicians a comprehensive, accessible review of the medical issues that arise from eating disorders by bringing relatable case presentations and a scientifically sound, engaging style to the topic.  Using metaphor and patient-centered language, Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture.  Dr. Gaudiani is a board-certified internal medicine physician, known nationally and internationally for her work on the medical complications of eating disorders...." 

FM and FM's PCP at El Rio Medical Center have read this book cover to cover.  I learned last week that others within the PCP's extensive practice are also reading it.  I have distributed copies of this book to the local Tucson  Crisis Response  Center, to social workers and psychiatrists at University Medical Center Banner South campus and to all members FM's treatment team. 

I believe this book should be required reading as part of the curriculum for all medical students, especially those who go on to psychiatric practice, for this knowledge and what goes on in the minds of those with eating disorders is not understood by many in the field here in Tucson nor is adequate treatment available here, either, especially for those with long-term eating disorders.

In addition, BioMed Central provided, in 2017, open access to several articles relevant to the discussion of SEED.  These include the original editorial written by Dr. Stephen Touyz and Phillipa Hay mentioned above and linked in the "Of Note" section of my blog and also articles and reviews titled (see the link also in the "of Note" section for full acknowledgements) Examining a staging model for anorexia nervosa: empirical exploration of a four stage model of severity; Applying neurobiology to the treatment of adults with anorexia nervosa;  Neurobiological Model of the persistence of anorexia nervosa, Case Management at an outpatient unit for severe and enduring eating disorder patients at Stockholm Centre for Eating Disorders - a study protocol; Avoid hospitalization for severe and enduring anorexia nervosa by personalizing your care; Listening in the dark: why we need stories of people living with severe and enduring anorexia nervosa; Predictors of therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa.  

One of our keynote presenters during the F.E.A.S.T. of Knowledge conference in March 2019 was Laura Hill. Ph.D., LLC, Assistant Clinical Professor, Department of Psychiatry, The Ohio State University, and formerly with the Center for Balanced Living.  The research article "Applying Neurobiology to the treatment of adults with anorexia nervosa" that she co-authored with Stephanie Knatz Peck, Christina E. Wierenga and Walter H. Kaye (also present at the conference) describes the treatment written about by Carrie Arnold titled and linked here  "Treatment for Adults: A Grown-up approach to treating anorexia."

Neurobiological Approach: While the concept of staging I believe is beneficial for the overall understanding of eating disorders, I believe family members may be looking for more specific tools and the why behind the tools.   Using neurobiological descriptions to explain treatment, the role and value of case management, the role and value of treatment modalities, and discussions about how to increase trust and build a therapeutic alliance between and among a person's team members would seem of great value not only to the patient and his/her family members but also to the team members as well as professionals treating the person in a medical and/or psychiatric setting.

The neurobiological aspects of eating disorders are being researched heavily.  We have learned that the brain can learn new behaviors - literally rewire to shift neural pathways that are sort of like roads in the brain leading to certain behaviors.  The goal is to override learned habits and substitute new ones.   This can be done!!!!!

In May of this year, Tabitha Farrar published a second book titled Neural Rewiring for Eating Disorder Recover: for real and meaningful mental freedom.  See below regarding her first book along with a link to her blog.  She is a recovery coach.  I personally endorse this book because I know from my own recovery experience that re-wiring as she explains the process is critical to recovery.  Re-nourishment is only part of the process and re-wiring takes longer.

Care Planning:  Robinson addresses "Care Planning" [Chapter 6, p. 95].  His view of  a "care manager" and their role is very important.  I address this at length at this link.  This role can be filled by a parent, especially for those working with a therapist trained in FBT, who continue to have the energy and are building knowledge about eating disorders and how to help their loved one get into recovery.  For adults diagnosed with a long-term eating disorder and for their family members, I am recommending that they and  those in the field of eating disorders as well as insurance companies explore the possibility of hiring (and having insurance pay for) a professional case manager, perhaps one who is a psychiatric social worker with extensive clinical eating disorder training.  Those of us, like myself, who are now in their late 60's or 70's, may need help.

Palliative Care:  Sometimes, especially when our loved ones adamantly quit trying, the subject  of palliative care comes up.  As Allan S. Kaplan and Amy Miles note in their paper titled "The Role of Palliative Care in Severe and Enduring Anorexia Nervosa" published in the Touyz, Le Grange, Lacy and Hay volume, Section 14, it is important to get beyond the early definition and to this instead:  "...However, as the palliative care movement has developed, so too has its scope.  As conceived today, palliative care encompasses the provision of multimodal, highly personalized treatment designed to improve quality of life when symptom-based approaches have proved ineffective or otherwise undesirable."  Some are learning to live with their illness rather than continue to fight it.
Also take a look at the article "Eating Disorders and Palliative Care" linked below in the resources section.

Dr. Gaudiani, in Part V - Specific Populations also brings relevant discussions to this conversation about SEED with the topics, "Older Patients","Substance Use Disorder", and, critically, "Caring for the Patient Who Declines Treatment: The Spectrum from Mandated treatment to Hospice Care "(pp. 220-242).

As a skilled therapist once told me, "Hope for the best yet prepare for the worst."  Remember, some have recovered.  It is possible.

On that note, Managing Severe and Enduring Anorexia Nervosa - a Clinician's Guide includes, Document 17 pp. 273-285, an essay by June Alexander who introduces herself by saying "I regained by self from anorexia nervosa (AN) in 2006, 44 years after developing the illness.  My story adds to the pile of evidence that recovery can be achieved at any age...."

Resources listed include:

Sick Enough: A Guide to the Medical Complications of Eating Disorders by Jennifer L. Gaudiani, MD, CEDS, FAED, Routledge, NY, 2019

Managing Severe and Enduring Anorexia Nervosa - A Clinician's Guide edited by Stephen Touyz, Daniel Le Grange, J. Hubert Lacy and Phillipa Hay (Routledge, 2016)

"Eating Disorders and Palliative Care" by Patricia Westmoreland, MD and Philip S. Mehler, MC, FACP, FAED, CEDS published in the Gurze-Salucore Eating Disorders Resource Catalogue, January 27, 2019.

Tabitha Farrar, a recovery coach, has recently published Rehabilitate, Rewire, Recover! - Anorexia recovery for the determined adult.  I am reading this now.  For more information about Tabitha Farrar, her coaching, her valuable podcasts, and her book go to this link.  As noted above, she has just published a second much shorter book titled Neural Rewiring for Eating Disorder Recovery: for real and meaningful mental freedom.  This is not a quick fix.  The process takes work.

Kathryn Hansen published Brain Over Binge - Why I was Bulimic, Why Conventional Therapy Didn't Work, and How I Recovered for Good.  I discovered this book while taking a psychology course offered by the University of Arizona's Humanities Series that included neurobiological aspects of the brain.  Since I, too, am in recovery for more than 40 years from anorexia/bulimia, I read the book and believe it offers a possible useful course of action for some mired in this diagnosis.  Here's a link to a review I wrote.

And, remember, Food is Medicine.  The recent (Routledge, 2018) book How to Nourish Your Child Through an Eating Disorder - A Simple, Plate-by-Plate Approach to Rebuilding a Healthy Relationship with Food by Casey Crosbie, RD, CSSD and Wendy Sterling, MS, RD, CSSD will help.  FM who has had countless sessions with nutritionists over the years has been using and recommends this volume.

This post will continue to include newly discovered resources and other contacts.

Emergency Department Intervention for Dangerously Low Electrolytes

3/24/19

As many of us have learned, unless you live in a city or area that offers a hospital with an up-to-date eating disorders treatment facility, when your family member's [FM] electrolytes are found by lab work to be dangerously low or his/her behavior indicates something is awry, the place to go for help is the nearby hospital emergency department [ED].  There one can obtain a lab order for blood work and, if necessary, electrolyte replacement and professional attention as well as admission to the hospital.  This important visit can be life saving.   A process to streamline this is needed.  Better yet, would be a clinic or hospital wing with staff trained to provide immediate care.

However, since the ED often has a line of people waiting for care ranging from things (observed this most recent visit) like uncontrolled vomiting, pain from kidney stones, high fever and coughing to broken limbs, heart attacks and concussions, the practice is to triage each patient.  This process evaluates the person and the immediacy of his/her need for attention.  In other words, just because you came in before the next person does not mean you'll be seen before that later arrival.  Then the person is seen usually by a nurse practitioner or doctor who places orders for procedures.  These first two steps can sometimes consume at least an hour or more of time.   The lab order needed requires a ready phlebotomist to draw blood and the lab analysis can take an additional 30 minutes or more.  Next steps can be delayed even further if the ED doctor(s) have many patients and have not been alerted to the results.

As those of us have learned as we support our FM, many times there's nothing "visible"
during triage to evaluate their place in line unless our FM has collapsed and been taken to the ED by ambulance.  Even then, as I have again recently been reminded, that method of transportation does not guarantee immediate action because there's still the question, "why are you here"?  In one instance, for example, FM was slurring her words and the ED doctors accused her of drinking alcohol when in fact her sodium level was 119.  Fortunately FM was alert enough to strongly object to the incorrect diagnosis and knowledgeable enough to demand a blood draw because FM knew what likely was wrong.  Perhaps a medical ID bracelet would be a good idea?

Having observed all of this many times, I have made certain that we have information in hand that can potentially speed up the process from triage to electrolyte replacement.  The most recent visit still took more than 3 hours from triage to set up, a time delay which could mean the difference between life and death for someone whose system cannot tolerate dangerously low levels.

Following is a suggested process that could be implemented at a hospital ED.  I have found it helpful to bring along a copy of the Academy of Eating Disorders Guide to Medical Care that provides critical points for early recognition and medical risk management in the care of individuals with eating disorders.  You can access this guide here, download it and print it or you can order copies from the AED (see the website for more information).

(1) your family member with an active eating disorder, for example anorexia subtype bulimia involving starvation combined with binging and purging or water loading (meaning drinking water prior to being weighed to increase his/her weight or even drinking water to feel full), needs to have a standing lab order in place from his/her PCP for at a minimum a Basic Metabolic Panel taken at least every two weeks and perhaps more often.

(2)  The laboratory that receives the standing order must provide you or if an adult, your family member, as well as your doctor with the results immediately if a dangerously low reading is obtained.  Be aware of what low levels are.  This report needs to be available electronically, if possible, so you can download and print the results to take to the hospital ED.  Time can be of the essence.  The report may indicate "LL" for very low level.  Often the report will highlight low level items in a separate list on the report.

(3) if you/your family member are alerted that the levels indicate immediate electrolyte replacement, upon arrival at the hospital ED, during triage provide the lab report and highlight the low electrolyte information.  Often I have learned the low numbers do not trigger the response you hope for so if I am present (and if not my FM knows to say) I call attention to the number and now state, "I need a phlebotomist to perform a blood draw and electrolyte replacement as soon as possible, please."

(4) Next step is with the medical professional who orders the necessary lab draw and any other tests or alerts deemed necessary.  Often, because ED's are usually very busy, FM will be told to go back out into the emergency area to wait rather than taken to a room.  If so, please encourage FM to stay put and within earshot to hear his/her name.

(5) FM is taken to a room or bay area and preparations are made to draw blood and to have an IV port inserted for administration of fluids with electrolytes.  The blood draw specimen goes to the lab.  Expect an additional wait of 30-40 minutes at this point.

(6) if the levels of both sodium and potassium are unsafely low (my FM once had a low of 115 for sodium (Na) and the hospital called me and prepared me for her possible death before I got there) your FM will receive the necessary electrolytes by IV.  It's extremely important that the sodium level be increased slowly and carefully (this information is explained in the above booklet).  In my FM's case, she is unable to tolerate the pain caused by IV administration of a potassium solution and demands an oral solution instead.  NB - if your FM is known to self-sabotage by purging whatever s/he is given or  drinking water from the faucet in the bathroom, alert the staff and request a commode in the room.  Ditto if the FM requests food once food and drink are permitted.  Your FM may be attached to a heart monitor especially if the potassium reading is dangerously low.   Years ago (2011) FM was mistakenly given a sodium solution for several hours and her levels went far above normal.  Fortunately there were no side effects possibly because FM's system was accustomed to these huge swings.  You can learn more about this at the link eating disorders and central pontine myelinosis.

(7) if the level of eg potassium was found upon admission to the ED to be 2.5 or less, the ED personnel should request a followup blood draw before discharge from the ED or admission.  I now always ask for this blood draw especially because our FM gets the solution orally and if the ED is inclined to discharge him/her directly home rather than admit her/him to the hospital.

(8) if levels were found to be very low, best practice would be admission to the hospital floor and oversight administered by a hospitalist who is well-versed in the care of someone with an eating disorder.  Most recently my FM was very fortunate to have a hospital floor nurse who knew immediately that another blood draw was needed to establish next steps.  Again, the booklet will prove very helpful.  The goal at this point will be to stabilize your FM and increase his/her electrolyte levels to the minimums and develop a plan for discharge and follow up with his/her PCP.

I also recommend (and have been distributing) the recently released (Routledge, 2019) book Sick Enough - A Guide to the Medical Complications of Eating Disorders by Jennifer L. Gaudiani MD, CEDS, FAED.  This has been at considerable expense to me but I believe that in addition to possibly saving the life of my family member, the book just might educate other medical professionals who have the curiosity to learn more about eating disorders.   I have learned here in Tucson that many doctors, even those attending in local psychiatric hospitals, have received minimal training in the medical aspects of eating disorders, nor have they a reasonable understanding of what goes on in the mind of someone fighting an eating disorder.

Severe and Enduring Eating Disorder (SEED) News, Developments and Commments

Updated 3 29 2018
As readers here know, a member of my family has been struggling with anorexia nervosa/bulimia nervosa combined with severe depression and anxiety since her teens.

A year ago she spent five weeks in a local medical hospital while her providers earnestly attempted to find a bed for her in a Level 1 (as it is called here in Arizona) psychiatric hospital as well as to a well-known eating disorder facility to no avail given the complex nature and longevity of her diagnosis.

During her stay, as a layperson although I have worked hard to be well informed (citizen advocate) on the subject, I met with push back and a certain level of patronization when I would inquire about lab results, her weight, and behaviors as well as offer suggestions.  As a result, I often sought, as her Court appointed legal guardian, to obtain the ongoing medical records in order to learn clinically what was going on.  Much of what I asked about I know is important information for those who practice in the field.

So, I was quite delighted to learn that the Journal of Eating Disorders has just provided Open Access to an article just published this year titled "Outcomes of an inpatient medical nutritional rehabilitation protocol in children and adolescents [up to age 23] with eating disorders".  Peebles et al. Journal of Eating Disorders (2017) 5:7 You can access the full article here:

In 2015, the Journal of Eating Disorders provided an important commentary on SE-AN titled "Severe and Enduring Anorexia Nervosa: in search of a new paradigm", an editorial comment written by Stephen Touyz and Phillipa Hay found here :  [Touyz and Hay (2015) 3:26]   My take-away from the article was that providers need to focus on a 'recovery model,' the goal of which is to "....draw upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong' with them."  The authors propose that "....Most patients with SE-AN are unlikely to fully recover.  Some do but they are in the minority.  It is therefore extremely important not to focus solely upon symptom reduction, but also to take into account a more holistic model of care....to take cognisance of the person as a whole by improving not only quality of life, but overall general functioning, employment and access to suitable housing as well."  I was hopeful, as I read their commentary, that additional research would be done and articles published to assist providers.  And so, apparently this is happening as the reader can find in the Peebles et al article above as well as the following that I've quickly put together here.

One may be of interest to therapists - Predictors of Therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa found here.  [Stiles-Shields et al. Journal of Eating Disorders (2016) 4:13]

Another is titled "Listening in the Dark:why we need stories of people living with severe and enduring anorexia nervosa" and can be found here.  [Conti et al. Journal of Eating Disorders 92016) 4:33]

I believe, as a family member, it's very important to hold on to hope.  I also am observing that a person with a severe and enduring eating disorder displays a tremendous amount of courage to keep going rather than to throw in the towel.  I think we as a society have a responsibility to stand by that person.