Updates and Thoughts re Eating Disorders that have become entrenched

Recently, I've posted three comments in other places that I've decided to draw together here.  This post will be somewhat disjointed as a result and I will probably return to edit it.  In the meantime, this also serves as an update of sorts and as another thank you to a woman -- Laura Collins -- who has made an enormous difference in the world of treatment for those with eating disorders.  It occurs to me, as with other social movements, that change comes from the bottom up. People like Laura Collins of F.E.A.S.T. and others connected with the organization she has founded (many, many parents and people currently on the -- at times -- tenuous road to recovery) are gaining a strong toe-hold and getting the attention of those who need to listen, many of them psychiatrists and therapists and treatment facilities who/which aren't keeping up with developments in the understanding of the brain and behavior and the influence of environment, and should be.

The recent news out of Great Britain of a teenager who recently died because she was released from a eating disorder treatment facility by people who decided that because she was an "adult" she could move on to take care of herself motivated me to return to post here.  Those people forgot that first, her brain was poorly nourished and therefore not functioning well, and that two, her prefrontal cortext -- the seat of where decision making is made -- was not (as with most teens is not) fully matured and probably would not be until her mid-twenties or because she had starved her brain, later than that.

An update of sorts is in order, because I have not posted here for quite some time.

First, for those with adult children with an ED that has become entrenched and who has a co-morbidity for example a diagnosis of borderline personality disorder and there seems to be no light at the end of the tunnel may I suggest that you

(1) never give up hope;

(2) believe that their true self is still in there, buried under the eating disorder's take over of their mind and it is, believe me, a take over;

(3) search for any means possible to force/persuade the person into treatment at a facility where your loved one will be safe for at least six months (twelve months would be better) - not only from herself or himself but also from all the many outside influences that may take him/her off track; 

[At this point of my list, I do suggest that you read Wasted by Marya Hornbacher. She was in such a treatment facility.  Continuing to help someone with a long-term eating disorder is absolutely critical. You are dealing with, I am sure you know, a deadly illness. 

(4) with an attorney if necessary, work with the medical/psychiatric staff at the facility to implement Sarah Ravin's excellent step program and be sure to follow the treatment. The first order of business is nutrition, nutrition, nutrition to bring your adult child's brain back to functioning order. Here is a link to what I am talking about:
http://www.blog.drsarahravin.com/eating-disorders/active-ingredients/
and then read this, too, also by Dr. Sarah Ravin:
http://www.blog.drsarahravin.com/eating-disorders/navigating-phase-ii/
This schedule is geared for someone whose ED is not as entrenched but it still highlights the time that is needed to overcome the ingrained behaviors.  
 
(5) Even if nothing else but restoration of weight and stabilization of electrolytes and of your adult child's brain occurs in that twelve months or so, your loved one will have been given an opportunity to heal in ways that seem invisible but that are critical for recovery. A nourished and somewhat stable brain is the first step.

(6) If at all possible eliminate all diet soda esp that with aspartame as recent research has indicated diet soda seems to exacerbate depression.

(7) If at all possible eliminate or cut way back on anything with caffeine so that the person's sleep patterns and sleep itself are not interrupted.

(8) Again, looking at Sarah Ravin's schedule, know and understand that recovery is fragile and tenuous every step of the way for those first six months or so. Remember that a set-back is not the end of the world. 

(9) A step-down facility may be (probably will be) necessary following this treatment in a locked facility.

(10) If you can, put together a team of people who "get" eating disorders and who "get" the person they are working with. An ideal team includes:
team leader who is herself/himself an experienced therapist
case manager
therapist for the co-morbidity
therapist for trauma work (if relevant)
nutritionist/registered dietician with ED education
occupational therapist
medical doctor
psychiatrist also trained in ED
http://desertdwellergettingon.blogspot.com/2010/11/team-approach-how-to-keep-recovery.html
 
An important component of this plan, as noted in the above link, is they all must have clearances to speak with each other and with the person (parent, spouse, etc.) who knows your son or daughter.

(11) if Borderline Personality Disorder was diagnosed (or emotional dysregulation disorder), get the very best therapist you can skilled in dialectical behavioral therapy who is at once kind but also hard as nails and who doesn't hesitate to seek their own therapist to help them because BPD is very difficult but not impossible to treat.

(12) remember that recovery is a long process rather than a one or two month treatment program.  Most therapists recognize that recovery can and probably will take 5-7 years.  

Progress...... one very small step at a time. 

Always remember the saying, progress not perfection. 

Also remember, eating disorders are brain disorders - an illness of the brain. If your loved one had tuberculosis (and the entire world is mobilizing for this disease probably because people suddenly realize it's becoming a real threat again, but just the same it is an illness) or cancer or MS or Parkinson's, real medical insurance companies would cover the treatment. There must be parity when it comes to eating disorders.  Contact your national and state legislators.  Demand parity.  NAMI and NEDA are very active in this work.   Our loved ones must be given a chance to heal just as someone with any physical disease must be given a chance. If treatment takes a long time or if it is chronic, then it must be covered and paid for.  It must be.

To close, I woke up this morning and remembered something one of my family member's therapists told me a few years ago having to do with ED treatment:

There was a time, in California, when there was a program connected with a major university, the organizers of which believed a year of treatment was necessary for someone to overcome an eating disorder (as a first step). The program was funded by a government grant, as I recall.

So little. So soon. Too soon for the rest of the psychiatric world to learn about and identify with before the program was discontinued, unfortunately. 

It's time to turn all of that around and return to the concept of long-term treatment, either in the home with paid leave covered by insurance to do this using formats such as that developed by therapist Dr. Sarah Ravin or in a formal treatment center that remains humanely connected with the family and that uses a very long term step-down program geared to the healing of the patient and not to some prescribed "everyone does it this way" kind of treatment.

I really do not know - I am not prescient - what the outcome will be for my family member but I do believe that it's important to share here what is being attempted on this person's behalf because little attention is being paid to those adults with entrenched ED's who could not benefit back then from what is known and is beginning to be practiced now.  

A link between diet soda and depression

The United States Department of Agriculture announced on Friday a proposal for "new standards to provide healthy food options in schools."

Note that this is a proposal and there is a call for the public's input, and a web address is provided in the news release.  So, the announcement does not necessarily mean a fait accomplit although the soft drink lobby is quite powerful.

Among the proposals is the availability of diet sodas for high school students and the choice of one diet soda each day for lunch.

At the same time, neuroscientists and presumably some members of the public are aware that an NIH study released in January reported a link between diet soda and depression!  Among the media reporting this was US News and World Report.

Earlier on my blog I wrote about the potential dangers of aspartame, an artificial sweetener found in many versions of diet soda.  I was surprised to find that the Mayo Clinic has actually addressed the question that I raised about phenylalanine.  

Here's a Mayo Clinic response to the question of phenylalanine,a substance found in diet soda.  Short answer - it can be harmful.

Today (March 14, 2013) another article that appears in the Huffington Post, this one by Dr.  Joseph Mercola titled Aspartame Pathway reports on the toxicity of another substance that appears when aspartame is broken down by the human body -  methanol.  From the article:  "Methanol acts as a Trojan horse: It's carried into susceptible tissues in your body, like your brain and bone marrow, where the alcohol dehydrogenase (ADH) enzyme converts it into formaldehyde, which wreaks havoc with sensitive proteins and DNA."

I hope more parents and the general public will become more aware of research that is uncovering links between aspartame and brain circuit disorders.  Perhaps in the meantime, if one wants a coca-cola, one might want to lobby their Costco or whatever to bring coca-cola that is bottled in Mexico (with cane sugar) to their locale.  Perhaps other soda manufacturers might want to return to real sugar, as well.

Yes, real sugar as well as sodas can be harmful, too, taken in excess.  In fact, studies have shown that some people became addicted to sugar when it first became widely available in our country in the 1800's.

Moderation is the key in all things.

Important step: Asking for Help

[revised - thought of some points while hiking later today]

Earlier this week I received an email from Real Age titled "4 Tips to Break Bad Habits."  One of the tips is "enlist support -- ask for help."

I've learned over the years while listening at conferences and support groups, and reading literature that the concept of asking for help can be quite difficult for those with an eating disorder, particularly those with a perfectionistic bent and whose cultural norm is self-sufficiency, a norm heavily promoted by our society in my experience.  Think of all those self-help books one finds on bookshelves.

Our sons and daughters who enter treatment at a residential or out-patient facility or even independent treatment with (hopefully) a skilled eating disorder therapist, are often given what are called tools to combat their brain disorder.   The goal of those tools is to help them choose an alternative course of action rather than to turn to the behaviors that are endangering their lives or slowly killing them.

What is missing from the tool box, it seems to me, is the creation of a list of human resources -- people -- who will help the person in the moment thwart the desire to binge/purge or refrain from eating.

Many find they have a very hard time picking up that thousand pound telephone, even a cellphone can weigh that much when confronted with the need to call someone for help.  Yet these contacts are critical - a buddy system, if you will.   The buddy system is used in the Army when recruits are going through Basic Training. 

Although much research continues on eating disorders, many have pointed to clues that the behaviors involved in eating disorders become actual habits that are rewarded by the release of dopamine and other substances that either bring pleasure or relief or reduction of anxiety/fear (among other things).

The goal is to change that habit.

Before release from treatment in a residential facility or before leaving the day program for home or while working with a therapist in a 50-minute session, the person with an ED would be well-served with the creation by him/her working with the therapist of a people resources list that might even be laminated and carried with him/her at all times or entered into a cellphone database.

Many treatment facilities will forbid a visit to the rest room for an hour after meals.  That's great but who will become the monitor after the fact?  Instead, provide practice sessions where the person graduates to no monitoring but is encouraged to go find help if the urge sneaks up on them to purge.  In real life situations out on pass, for example, encourage the person to ask for help before the urge to grab a handful of aspartame packets at the coffee shop or give a sandwich to a friend during school rather than eat it for lunch takes over.  I'm sure there could be lots of other examples and I mention only a few to avoid triggers for those reading this.

There are Facebook pages and individual blogs out there used by people in recovery who reach out when they find themselves struggling -- another great way to ask for help.

Asking for help is part of the new behavior that must be developed for the person to survive.  Some might be able to turn to their own inner resources immediately (possibly because they're sick of being sick and tired), but most will need this extra step to make it all fit together, I think.  Perhaps the lack of this is one contributor to the relapse rate?

Encourage the creation of a multiple buddy system of people who will support the endeavor to get well rather than enable the person to continue with their behavior!

Just maybe we cannot do "it" alone.

[I write this piece with thanks to a therapeutic clinical treatment team that has developed this approach.  I think the approach makes a world of sense.]

The Buddha and the Borderline: A Memoir

Normally I would write a substantive essay before posting here; however, I want to highlight Kiera Van Gelder's book, The Buddha and the Borderline - A Memoir:  my recovery from borderline personality disorder through dialectical behavior therapy, buddhism, and online dating (New Harbinger Publications, Inc., Oakland, CA, 2010) now and write more about the book later after I figure out how I'm going to present it in terms of being a family member.

After perusing Kiera Van Gelder's work but setting it aside late last Spring to read and review Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D., earlier this week I picked it up again and read it word for word  because I wanted to get a first-hand up-to-date look at BPD from the perspective of a person who takes the reader on her journey with BPD (meaning she introduces the reader to BPD, to the effective (for her and why) therapies used, and how her life has played out - at least until 2010 when the book was published).

I learned so much from this book! and recognized my loved one's behaviors more times than I can convey here.  I highly recommend this book, too, as do many well-recognized to the field of BPD people among them (from the pages just inside the cover) Robert O. Friedel, MD, author of Borderline Personality Disorder Demystified; Perry Hoffman, Ph.D, president (2010) of the National Education Alliance for Borderline Personality Disorder; Blaise Aguirre, MD, medical director of the Adolescent Dialectical Behavior Therapy Residential Program at McLean Hospital in Belmont, MA.; Tami Green, internationally recognized speaker, life coach and advocate for those in recovery from mental illness, Roy Krawitz, author of Borderline Personality Disorder The Facts; Randi Kreger, author of Stop Walking on Eggshells and The Essential Family Guide to Borderline Personality Disorder -- this latter book by Randi Kreger helped me a lot!) and several more.

As Robert O. Friedel, MD, notes - "A must-read for people with this disorder, their families and loved ones, and mental health professionals."

I hope to illustrate why and how Kiera spoke to me through her writing.

More later.