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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What other steps can be taken?

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

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

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

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

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

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

Body, Mind, Spirit

Some years ago (actually in the 1970's)  the "Six Million Dollar Man" was a popular television show.  The series gave rise to "The Bionic Woman."  For those readers who weren't born yet, these series featured people who had what have now become more commonplace - artificial parts to replace or shore up our failing human biological components.  Nowadays, one can get implants or transplants for just about every part of the human body; an exaggeration, I know, but so often now we read of a new miracle of surgery and science.

My mother, had she lived a few more years, might soon have been able to see clearly again.  She lost her eyesight to the dry kind of macular degeneration and with the loss of her sight went her independence.  She soldiered on, as she put it, for a few years - until she turned 89 -  before she died after not surviving hip transplant surgery.  An artificial eye is on the horizon.  What a miracle that will be.

Any one of us now, given availability and more importantly insurance or a fortune or means to repay a loan, can get a tooth implant, a heart transplant, a liver transplant, and a new knee or hip, for example.  

One's teeth are covered by dental insurance, one's body is covered by medical insurance, in fact one's brain is covered by medical insurance, but the coverage of one's mind is at the whim of insurance companies or the government laws/legislatures.

Think about it.   Aren't your teeth part of your body?   I overheard someone speaking to my dentist this morning and he remarked he needed to return to his periodontist to be treated again at $20/minute.  One single tooth implant can cost upwards of $10,000 out of pocket  while a much larger and more complicated hip implant can cost you a relatively small copay if you have medical insurance.  If you suffer a stroke and are without insurance, you still can go to the hospital and get treatment that inevitably will be covered by some kind of insurance or absorbed by the hospital's financial machine (to its detriment).

But if you have a mental illness such as bipolar disorder or an eating disorder, good luck getting enough coverage or any treatment even if you have insurance with a mental health component so you don't have to go home prematurely (meaning before enough treatment is provided to reverse the effects of the disease) to die as someone I am somewhat electronically acquainted with put it recently.  

Aren't all of these organs from which these illnesses develop part of the human body?  Does it seem ridiculous to you as it does to me that there's no integrated insurance coverage to address all the ills of our bodies?  

Having studied anatomy and physiology in college, I became in awe of the interconnections of all parts of my body.  We spring from this tiny egg that is fertilized by a little sperm and eventually are born into this world with everything working correctly, if all goes well.  Beyond birth, our bodies are subjected to the vagaries of existence on this earth ranging from diet to shelter to opportunities.  

Yet when it comes to medicine, our bodies are splintered into parts that are addressed separately by members of the medical profession without regard to the fact that an abscess of a tooth can lead to death of the body, that dehydration and electrolyte imbalance can lead to death of the body, that a heart attack can lead to death of the body, that an infection from bacteria introduced to an opening in the skin when getting a transplant or implant or even a cut can lead to death of the body, that a imbalance of substances in the brain can lead to depression that can lead to suicide/the death of the body.

Read the above again.  Every single one of the things I've listed can and does happen to those with eating disorders.  Every single thing.  And yet our government of the people, by the people and for the people does not provide adequately for those who have a mental illness, even those who have insurance!!!!

And spirit?  What about spirit?  Wikipedia provides a rather broad definition of this term.  About three years ago I participated in a Family Week during which our group leader remarked that we are all spirits, if you think about it.  Our bodies are made up of molecules that are made up of particles that are in constant motion.  The body electric.  What happens over time to someone whose spirit is not nurtured, whose very being is maltreated or ignored.  Death.

Isn't it time to take a harder, more accepting look at  holistic medicine?

I think so.  I am angry that I need to go after these different facets to address and advocate for the well being of my loved one.  That one "side" won't work with the other "side" even though the basic team that meets includes all sides.  There's something wrong with our system.

Terms and Definitions - "Clinical Switch"

As do most professions, Behavioral Health (meaning mental health, mental illness, related substances abuse) has plenty of acronyms and code word expressions.  Over these last eight years I've needed to learn many and understand the nuances, too.

For example, now that my loved one has been released from the latest in a series of eating disorder residential treatment facilities due to non-compliant behavior (definition variable and behavior common to those with eating disorders) and medical issues that need to be addressed, the newest one I've come across is "Clinical Switch."   The meaning of this expression became instantly clear because it was apparent that my loved one's primary diagnosis of eating disorder is not driving everything; rather, it may be a secondary diagnosis made in the Spring of 2007 after years and years of behavior that seemed to point to it that is now believed to be the basis.  At least, that's where things stand now.

Yet, anxiety was present from a very early age, too.  Here's a recent post that includes a thoughtful discussion by Dr. Bermudez, a pediatrician, and doctor connected with the ERC.

So was "picky eating."  (I need to find more information on this because there was a useful article about this that appeared sometime in the last three months or so.)

I've been advocating this follow up stance for several years now on a website for eating disorders; namely, if your son or daughter has become re-nourished and has reached the target weight and has sat in his/her body for quite awhile, in acceptance of that body, yet maladaptive (another term) behaviors continue, it's time to seek another examination by a competent psychiatrist.  In fact, two opinions wouldn't hurt. 

Then, it's important to push for a re-examination of the entire situation.

As Marya Hornbacher notes in her book, Madness (Houghton Mifflin, 2008) in the chapter "Bipolar Facts" (pp. 281 - ), the average age of the development of Bipolar Disorder is 23 yet the average age of correct diagnosis is 40.  I imagine this may be the case for plenty of brain disorders that have symptoms that overlap.

Bipolar disorder (you may have heard the expression manic-depressive or you may have Kay Redfield Jamison's valuable memoir, An Unquiet Mind (Vintage, 1996)) is variable.  Some people have rapid cycles; others do not.  Without going into a lot of detail, this was one of my loved one's potential diagnoses when things turned really south about 9 years ago.

Besides anxiety disorders, Borderline Personality Disorder (BPD) should be suspected to be a possible driver.   From 25-28% of those with BPD also have an eating disorder.   An excellent very thick book is Get Me Out of Here:  My Recovery from Borderline Personality Disorder by Rachel Reiland.   The book gives the reader a lot of hope because the young woman did make progress.  So have others.  An excellent tool for treatment is Dialectical Behavioral Therapy, a method developed by Marsha Linehan.  A very good website to explore is dbt self help.   This site provides a definition, provides skills lessons, videos, and statements by those who are working towards recovery (among other things).  It was written for those who have the disorder rather than professionals yet it is comprehensive and understandable.

I've already in another post mentioned an excellent book by Randi Kreger titled The Essential Family Guide to Borderline Personality Disorder that I bought a couple of years ago when I began to really pay attention to the idea of a secondary diagnosis -- the term co-morbidity applies here.

The National Institutes of Mental Health provide a link, as well, for BPD.

So, enough of that.  I don't like labels; most people don't, either.  Pigeonholing someone in a diagnosis is a dangerous thing which is why the team has proceeded very carefully.  But it's time to take a more serious look.

What a digression!  On to some additional relevant definitions:

Clinical Switch - this should be obvious now as the therapy direction will be towards BPD and less so towards the eating disorder, which indeed is a mental illness.

Dual-Diagnosis - for the longest time I didn't have a clue what this meant until I attended a NAMI Family to Family series of classes and learned what it meant.  Many people with mental illness of all kinds will turn to other substances to calm themselves - something called "self-medication."  I thought the term meant co-morbidity.

Decompensation - I've heard this expression a lot lately.  Our local newspaper, The Arizona Daily Star, has begun a four-part series on Mental Illness .  Two full pages of the newspaper provide definitions, resources, and other information of vital importance for families who are trying to help a loved one with a mental illness.  I hope this series of articles will remain in the public domain as the information is so important. The definition provided by the Arizona Daily Star (p. A21) is "what happens when the condition of a person with mental illness who has been stable and functional, often on medication or other therapies, deteriorates and the person shows worsening symptoms of his illness.  A decompensating person is likely to end up in a mental illness crisis if he's unable to get treatment."

These seem the most relevant now. 

Nutrition: the brain and neurotransmitters

3/24/19

When I posted this originally, I wanted to take a brief look at the brain and in general the importance of neurotransmitters, the chemical messengers in the brain.   The most familiar to many parents on this journey is serotonin but there are other important neurotransmitters, as well, among them dopamine, norepinephrine and GABA which is really a derivative of an amino acid.  For those who want to learn more, here’s a great synthesis.

I note that serotonin is/may be familiar because one of the first lines of offense for eating disorders other than food are medications called SSRI's (or selective serotonin reuptake inhibitors) like prozac, celexa, lexapro and zoloft.  Take note, though, that many of these medications will not work or will not work effectively until the brain itself is functioning better through nutrition.

This chart linked above reveals that these chemical messengers – the neurotransmitters -- don’t just exist indefinitely in the body.  Rather, they are manufactured in the body which means we must eat foods that are known to help create these messengers.  This is why a full complement of protein, complex carbohydrates, and fats (lipids) is so very important.  We need brain food.  Our brains need on average 500 calories of glucose each day from complex carbohydrates (so the glucose is released slowly throughout the period between eating) to carry out its functions. 

The brain itself is composed of about 78 percent water, 10 to 12 percent lipids (fats) and smaller percentages of protein and carbohydrates and salts.  Again, it’s what’s in the food we eat that matters.  If, for genetic reasons, our bodies do not manufacture enough or manufacture too much of these substances or if we don’t utilize these substances or if the medications we are given interrupt this balance to our detriment, problems develop.

So, for example, for our bodies to manufacture serotonin, we need an essential amino acid.  Amino acids are the building blocks of protein and essential amino acids must come from food sources.  L-tryptophan is necessary for our bodies to manufacture serotonin.  Food sources include dairy and poultry including eggs, especially.  And, if one is taking a medication to block the reuptake of serotonin (e.g. Celexa, Lexapro, and Zoloft) so the neurotransmitters remains available to the neurons (and is therefore depleted eventually), these nutrients are even more important to synthesize more serotonin. 

In addition, remember that serotonin decreases dopamine activity in the brain so the person presumably feels more relaxed and less anxious.  However, if we aren’t eating well to produce the serotonin in the first place, our levels will drop and dopamine, that is manufactured by the body and that is also stimulated by caffeine and nicotine, for example, will predominate.  Excess dopamine can cause anxiety, insomnia, shaking, increased blood pressure, irritability and anger among other things.   Folate and Vitamin B12 are also required for the manufacture in the body of neurotransmitters.  It all works together and an imbalance can cause havoc.

Moderation and a healthy food plan is key.  As material provided by Martie Fankhauser indicates and as the Maudsley Method advocates, “….Work with the healthcare professional [in this case your loved one’s entire team] to be sure that nutrition, sleep (to help the body manufacture more neurotransmitters), exercise (to activate neurotransmitters and to convert melatonin back to serotonin), sun exposure (to combine with cholesterol to manufacture Vitamin D) and hormone balance are brought to maximum potential.”

For me specifically (anorexia/subtype bulimia), I figured out and Martie corroborated this for me in detail, that to prevent the urge to binge and purge, I needed to eat a full breakfast that did not include simple sugars but rather included a good balance of protein, complex carbohydrates and lipids.  I chose eggs and dairy for my protein and lipids as well as fruit for complex carbohydrates.  Later in my recovery when I gained confidence that this method worked, I added whole grain bread and higher protein cereal.  I avoided anything “sugared.”  I also made sure to supplement this with my vitamins and minerals and during the day snacked on foods that would not spike my sugar but rather would introduce, through complex carbohydrates and protein with lipids (like peanut butter), nutrients gradually during the day.   I frankly didn’t know what I was really doing at that point from a nutritional standpoint, but it seemed to make sense so I did it.  I am not saying this will work for everyone with bulimia, either, since we all are different.  But, it’s worth investigating as part of the package.  And, as I’ll mention when I talk about serotonin, there is a serotonin receptor in the gut that encourages vomiting when one creates too much, perhaps from overeating.  One can wonder if our ancestors developed this protective mechanism to avoid becoming too overweight, therefore slower, and therefore unable to go out to hunt and gather.  I hope more research continues about this very interesting neurotransmitter that is so important to bodily function.

In the Spring of 2007, when my loved one was rapidly losing ground and I was convinced that something was going on besides “just” starvation, I learned about the National Alliance on Mental Illness from a friend whose adult daughter was also struggling with a brain disorder.  NAMI maintains a terrifically informative website on which you’ll also learn about a class offered by chapters nationwide called NAMI Family-to-Family Education.  I signed up for the class and was taken through an immense amount of valuable material by two women whose family members had brain disorders and who received training to help us new parents navigate the mental health system with tools and understanding.  We all became educated advocates as a result of this class.   

I would highly recommend it to anyone whose loved one has an eating disorder because eating disorders have been shown to be the result of brain dysfunction, too.  There is a lot of stigma associated with mental illness.  We must get beyond that if we are to help those whose brains aren’t working “right.” 

 

In addition, as I’ve written before and others are emphasizing as well, if upon return to (through testing) that nutrition is maximum but behaviors regarded as abnormal or unusual (as was the case for my loved one) are still continuing, then it’s time to get another psychiatric opinion (or more) to evaluate if another brain disorder is present (what’s known as co-morbidity) in which case the eating disorder may have been your loved one’s way of coping with other imbalances such as an anxiety disorder.

A good example of this compound issue is Marya Hornbacher whose memoir Wasted  (Harper Collins, 1998) was followed ten years later by her book Madness (Houghton-Mifflin, 2008) in which she reveals that she was later diagnosed with Type 1 rapid-cycle bipolar disorder.  Hornbacher's memoir builds upon and adds important information to the earlier published and insightful memoir by Kay Redfield Jamison titled An Unquiet Mind (Vintage Books, 1996).

The fourth week of the NAMI class was devoted to brain biology and the underlying reasons for brain disorders from a chemical point of view.  Each class lasted a couple of hours.  I think it would be helpful for NEDA and other groups that offer conferences on eating disorders to include this session or one like it to educate parents about the workings of the brain and why nutrition is so very important.

Here is a very simple brain map on which you can click to illustrate which areas of the brain are keys to behavior and abilities.  Carrie Arnold's book Decoding Anorexia - How Breakthroughs in Science Offer Hope for Eating Disorders (Routledge, 2013) offers a detailed and in layperson's terms the functions of the different areas of the brain.  More recently even more details have been learned by those studying fMRI brain scans.

Clearly, if the brain is starved (remember, the brain itself needs 500 calories each day to function and it needs the neurotransmitters, that are dependent on nutrition and synthesis by the body, to work), everything falls apart.  If the brain’s chemicals are all messed up by binging and purging (electrolytes and nutrients are vomited  which means the body/brain regulatory systems in their frantic efforts to bring the body back to balance start setting off alarm bells)  biochemical balances that are also key to everything working right are disrupted, too.

Wise nutrition is key.  

Guest Post - Boundaries

The concept of boundaries presents many layers of comprehension.  There's the definition itself, there's my boundary and how I've come to establish that definition, there's my family members' boundaries both from my perspective as well as theirs....  I recently shared at a meeting that I grew up in an environment where, using the idea of a cellular membrane, mine were fairly permeable and my elders regarded them as permeable.  I have learned with a lot of work that I have the right to make mine less permeable and, as well, that my family members have the right to make their boundaries nonporous, if they wish!  In other words, we all need the right to autonomy and sense of self that works for us.  Our children need to develop a sense of self and we, as parents, need to provide that space as well as a healthy working model of what boundaries mean.

That said, I obtained permission to post a recent commentary from an eating disorders facilitator -- Marjie Ruth -- who regularly posts about concepts that those of us with loved ones with eating disorders need to think about.  Her latest is on boundaries.  This post is very important, especially for parents of adults but as well for parents of soon to become adults.

"This week I'd like to recommend a book to you. As you are probably
aware, there are quite literally hundreds of books written about eating
disorders and thousands about addictions with many, many more about
relationships, psychology, etc. Quite frankly, I'm not one who has read
very many of them. I find it can be quite difficult to read about the
nightmare while I'm living it on a daily basis. I tend to want to
reserve what little reading time I have for something more enjoyable
than the blow by blow description of someone else's horror story. Yes, I
like use my down time for pure escapism with light hearted comedies
being my favorite. But while in my local grocery store one day, I
happened to see a title on a book display stand near the deli counter
that caught my eye (Yes, clever marketing to reel me in while waiting to
be waited on!). I grabbed the very last copy of Setting Boundaries with
Your Adult Children (subtitle: Six Steps to Hope and Healing for
Struggling Parents) by Allison Bottke that they had, and I'm so glad I
did. This book has turned out to be a real gem. I'll provide detailed
information at the end of this email in case you're interested in trying
to secure a copy for yourself.

What Ms Bottke has done is to write a 'How To' manual based on her
personal experience with her drug addicted son. While the title refers
to "adult" children and many of the scenarios are definitely geared to
adults, most of the the concepts she puts forward regarding boundaries
are applicable and useful with minor children and, indeed, with all
relationships. The steps she outlines are especially helpful for those
of us who have a tendency to enable--and I most certainly place myself
in that group.

What follows is my very brief compilation of some excerpts from
Setting Boundaries with Your Adult Children by Allison Bottke:

  " What is the difference between Helping and Enabling?

Helping /is doing something for someone that she (or he) isn't
capable of doing herself.

Enabling/is doing for someone what she could & should be doing for
herself.

An enabler is a person who recognizes that a negative circumstance
is occurring on a regular basis and yet continues to enable the
person with the problem to persist in his detrimental behaviors.
Thus, enabling creates an atmosphere in which our adult children can
comfortably continue their unacceptable behavior.

ARE YOU AN ENABLING PARENT?
 
The following questions might help you determine the difference
between helping & enabling:

1.Have you repeatedly loaned your adult child money, which has
seldom, if ever, been repaid?

2.Have you paid for education &/or job training in more than one field?

3.Have you finished a job or project that she failed to complete
herself because it was easier than arguing with her?

4.Have you paid bills she was supposed to have paid herself?

5.Have you accepted part of the blame for her addictions or behavior?

6.Have you avoided talking about negative issues because you feared
her response?

7.Have you bailed her out of jail or paid for her legal fees?

8.Have you given her "one more chance" and than another and another?

9.Have you ever returned home at lunchtime (or called) & found her
still in bed sleeping?

10.Have you wondered how she gets money to buy cigarettes, video
games, new clothes, binge food & such but can't afford to pay her
own bills?

11.Have you ever "called in sick" for your child, lying about her
symptoms to her boss?

12.Have you threatened to throw her out but didn't?

13.Have you begun to feel that you've reached the end of your rope?

14.Have you begun to hate both your child and yourself for the state
in which you live?

15.Have you begun to worry that the financial burden is more than
you can bear?

16.Have you begun to feel that your marriage is in jeopardy because
of this situation?

17.Have you noticed growing resentment in other family members
because of your adult child?

18.Have you noticed that others are uncomfortable around you when
this issue arises?

19.Have you noticed an increase in profanity, violence, and/or other
unacceptable behavior from your adult child?

20.Have you noticed that things are missing from your home,
including money, valuables, and other personal property?


If you answered "yes" to several of these questions, chances are
that at some point in time, you have enabled your adult child to
avoid her own responsibilities & to escape the consequences of his
or her actions. Rather than helping him/her grow into a productive
and responsible adult, you have made it easier for your loved one to
become even more dependent and irresponsible.

If you answered "yes" to most or all of these questions, you have
not only been an enabler, but you have probably become a major
contributor to the problem.

It's time to stop.

If you've found this interesting or helpful, you might want to try to
obtain a copy of her book. Here's the pertinent info you will need to
find a copy either on the internet or at your local book seller: ISBN
10-0-7369-2135-4 Copyright 2008. Published by Harvest House
(www.harvesthousepublishers.com).

We'll talk more about this in our group meeting. Enabling can be a
difficult concept to come to terms with, especially when it comes to
identifying our own enabling behaviors. But we shouldn't let that
difficulty discourage us from trying to recognize and deal with the
problem. The stakes are too high. Because we easily become overwhelmed
with concern and/or fear for our loved one, it's oh-so-easy to justify
our actions on that basis. That's why it's important to go back and
reread the definitions. Still having trouble understanding? That's
OK--it is difficult and next week I'll share a bit more with you from
this book and about enabling..

Marjie Ruth

727-244-9011 (c)

PS Anyone reading this may feel free to share it with others. Please
include the entire email so that all material within is attributed to
the proper source. Feel free to contact me if you'd like to be added to
my regular mailing list. It is entirely confidential. And just let me
know if at any time you'd like to be taken off the list. It's OK, really."

Borderline Personality Disorder and Eating Disorders

I continue to mention Borderline Personality Disorder (BPD).  My book list contains a few items about BPD.  And, as I noted in my previous post, I prefer to call BPD Emotional Disregulation Disorder.  This characterization is not entirely accurate since BPD is said to have three dimensions having to do with cognition, feeling, and acting.  Those diagnosed with BPD exhibit faulty thinking, emotional disregulation, and impulsivity.  And, there are genetic underpinnings with the inheritance of traits.

When I started researching this topic, one of the first things I learned was the anecdotal response, namely that those diagnosed with it are difficult to treat and most therapists (this was three or four years ago) are not willing to work with people who’ve finally been diagnosed with it.

I say finally because in many cases the behaviors and reactions of one with BPD mimic other disorders so the diagnosis is not made for years (similar to the variations of bipolar disorder for some folks, which by the way, is termed a brain disorder).  Marya Hornbacher, author of the pivotal memoir Wasted, notes in Madness, A Bipolar Life, that the average age of onset of bipolar disorder is 23 yet the average age of correct diagnosis is 40 (p. 282) 

In the past couple of years, a broad group of psychiatrists, researchers, parents and friends have worked hard to increase the knowledge about BPD including the fact that it is treatable.  They have formed organizations such as the National Education Alliance for Borderline Personality Disorder  that has a website:  http://www.borderlinepersonalitydisorder.com/  

 In addition, several books have been published, one of the most helpful for parents being The Essential Family Guide to Borderline Personality Disorder written by Randi Kreger.   

This group worked long hours with the National Alliance on Mental Illness with the result that this disorder is now recognized on the NAMI website (as are eating disorders).  The NAMI and the NEA websites are outstanding.  The NAMI website includes a link to medications 
as well.  I've often referred parents of those with eating disorders to the medications link because many of the descriptions are up-to-date and several of the medications are prescribed.

One of the reasons I am raising this issue is a variety of studies show that at least 25% of people with an eating disorder also meet diagnostic criteria for BPD.  Other studies indicate a lower or broader percentage range. Whatever the case, this gets back to my recommendation to parents that if, when re-nourished, a person’s maladaptive behaviors continue in spite of the use of the tools gained during treatment, then it’s time to have another psychiatric evaluation.  Since something on the order of 65% of people with eating disorders earlier exhibited an anxiety trait, a psychiatric evaluation is useful in any case to make certain the person receives treatment to learn how to deal with it.

If the diagnosis of BPD is made, remain steadfastly supportive of yet detached with love from your loved one because it’s a lonely place to be.  These  Guidelines have been identified as useful for families.   Treatment protocols are broadening as understanding of how to work with people with this diagnosis increases.

Dr. Amy Baker Dennis provided an excellent presentation on the treatment of those with BPD at the NEDA conference, unfortunately scheduled the very last day at the very last session before the closing general session.  Often those with BPD turn to other substances to self-medicate.   Using treatments like motivational interviewing and dialectical behavioral therapy, progress can be made.  Others would benefit from hearing her talk.  I hope it was recorded.  

PS - I just stumbled upon (9-2011) Dr. Thomas Insel's thoughts about Borderline Personality Disorder and am pleased to add his remarks to this conversation.  How refreshing to see that he, too, feels that the diagnosis terminology is misguided.

Is the term "Eating Disorder" a misnomer?

This subject has been bugging me for a very long time.  I feel the same way about the term Personality Disorder and more specifically Borderline Personality Disorder (BPD) because I believe that BPD like ED originates somehow in the brain.  Something isn't working "right."  For example, I believe that BPD really should be called Emotional Disregulation Disorder until a real, working name can be ascribed to the disorder. 

For the same reason, I think there needs to be another term for what we now call Eating Disorders.  I also think that Dr. Walter Kaye's research may just provide an answer for my dilemma.

About three weeks ago I ordered and received The Oxford Handbook of Eating Disorders edited by W. Stewart Agras.  This impressive volume contains an article by Walter H. Kaye and Tyson Oberndorfer titled "Appetitive Regulation in Anorexia and Bulimia Nervosa" that one, at least for the time being, can access by going to this link and scrolling down through the contents.  

One can access a related article here published in Neuroscience, Vol. 10, August 2009, p. 537-

I'm still pondering everything that I've been reading this morning but one thing does hit home and that is this quote on page 84: 

"Taken together, these PET-radioligand studies confirm that altered 5-HT neuronal pathway activity persists after recovery from AN and BN and support the possibility that these psychobiological alterations might contribute to traits such as increased anxiety, which may contribute to a vulnerability to develop an ED."

Imagine if one could instead call these disorders 5-HT disorders.  Not as sexy, sure.  But if these are indeed brain disorder/dysfunctions as I at a gut level (sorry) believe them to be, then what a change there might be in the community as a whole to the call for treatment -- complete treatment -- of these disorders as psychobiological illnesses therefore eligible to be covered by health insurance to the fullest extent until a person is recovered and has learned tools to harness their personality traits.

As one who has recovered from a 5-HT disorder (there, I said it), I think there are a lot of links that our bodies will reveal.  For example, if my running was indeed a stress reliever (and I believe it was), then what of my own tendency to absorb liquid rather than perspire it out while I run?  In my case, my hormone vasopressin  has consistently been secreted at a higher than normal rate when I run long distances or hike long distances.  My body perceives stress and responds by secreting more of this which leads to water retention.  I actually gain weight when I run long distances and drink to replace fluid lost in perspiration.   Is this related in some way?  Maybe further research will uncover the truth.

In the meantime, I think I'll start calling an ED a 5-HT disorder.