Postscript : When the Financial Well Runs Dry - Minnesota leads the way

This article that appears in Minneapolis-St. Paul Star Tribune illustrates what can be done when insurance companies "get" that treatment for eating disorders is not only critical but also a necessarily prolonged process in order to help a person fully recover from an eating disorder.

In case this article is not accessible to the public beyond this week which often happens, the article written by Chen May Yee of the Star Tribune in the Lifestyle section on December 25, 2010 notes that treatment for eating disorders is available in Minnesota at a far higher level than in others due to "...the willingness of the state's insurers to pay for treatment." 


Two centers are cited:  the Melrose Institute in St. Louis Park Minnesota and the St. Paul-based Emily Program.  The Melrose program admitted ten percent of its patients from out of state and the Emily Program admitted six percent from out of state, according to the article.  The Emily Program has expanded to seven locations within the state.  The Melrose Institute apparently is considering opening another center in Twin Cities.


This development was spurred by an important and successful lawsuit ten years ago by Kitty Westin and her family after the death of her daughter when Blue Cross/Blue Shield failed to provide adequate treatment.  Now, to quote Dr. Murray Zucker, identified in the article as a medical director with OptumHealth, the care management arm of United Health Group, "...From a cost-effectiveness standpoint, it makes sense to treat eating disorders as quickly as possible and in as efficacious a way as possible."


I hope the national headquarters of these and other insurance companies will step up rather than wait for a similar lawsuit in other states.  To repeat what was said in the article, immediate and adequate attention to eating disorders can ultimately save hundreds of thousands of dollars for the insurance companies (there's that economic benefit again) as well as many lives.  The work of NEDA and other organizations is certainly important to this process.

Reflections on the team approach - massage therapy

Earlier, I wrote a piece on the team approach to be utilized when a person has been discharged from a residential treatment facility and clearly needs ongoing assistance in the process of recovery that often can take up to seven years.

I've also written twice about oxytocin and this hormone's potential/possible value to the recovery process.

I'm proposing the addition of a skilled massage therapist to the treatment team.  By skilled, I mean someone who has taken some sort of certification in the knowledge about eating disorders and body dysmorphic disorder that can accompany the symptoms of one with an eating disorder.

I believe that part of my recovery was thanks  to the monthly massages I obtained early in my recovery process.  To add a bit of a story to this proposal, I was a single mom at the time and could not possibly afford the luxury of a massage.  Fortuitously, my next door neighbor needed someone to haul out her trash bin and I was strong enough to do it so she paid me.  Each month I accumulated enough money to get a massage.  Touch.  How important that was.  The feeling of wellness that seemed to course through me each time.  Now I know at least part of that was due to oxytocin.  The feeling of lying there and becoming acquainted with touch on my body in a  non-threatening way.  The feeling that I was worth it.  The feeling of where my skin was and how my muscles felt being stretched.

I enjoyed a massage this week and talked about all of this with my massage therapist who is skilled in this area.  She recounted her treatment of those who needed a kinesthetic sense of their bodies.  Imagine if folks could be gradually introduced to their physical sense of self through the wise and trusted treatment of a massage therapist.  Imagine coupling this with the work being done in group and individually!

Reflections on Recovery: out with the old, in with the new

I think some of the most useful developments in understanding concepts in the fields of psychology, neurobiology, and medicine seem to happen when these concepts are applied to things that people who are healthy wrestle with from time to time.

An example, that I think will be translatable for those whose loved ones have an eating disorder or some other harmful/unhealthy behavior, is the topic of the article that appears in today’s Wall Street Journal, December 22, 2010, p. D1.

Sue Shellenbarger, one of my favorite writers for a very long time, has investigated “How to Keep a Resolution – Forget Willpower, Reaching a Goal Means Retraining Brain to Form New Habits.”  The first three paragraphs highlight the hurdle and I’m repeating them here.  I don’t know if the editors will decide to make this article accessible to the public in order to read the whole thing, but I hope so.  Here’s the link.

“As the peak season for making New Year’s resolutions draws near, most people, behavioral experts say, approach the process exactly wrong:  They rely on willpower.

“Willpower springs from a part of the brain, in the prefrontal cortex, that is easily overloaded and exhausted.  What works far better, researchers say, is training other parts of the brain responsible for linking positive emotions to new habits and conditioning yourself to new behaviors.

“When setting a resolution, simply deciding to change your behavior may work for a while.  But when the cognitive parts of the brain responsible for decision-making become stressed by other life events, that resolve is likely to succumb to an emotional desire for instant gratification, says Baba Shiv, a Stanford University marketing professor who specializes in neuroeconomics, the study of the biological bases for making economic decisions.”

Pause here.  For those of you with loved ones working to recover from an eating disorder, doesn’t that sound sort of similar?  And for those who think their loved ones can just quit using their mighty willpower, do you understand now why this can be so difficult?  Willpower just can’t cut it, especially when a person is overwhelmed with anxiety or another brain disorder or whose brain is so malnourished that it isn’t working properly anyway.

Getting on the road to recovery is a process.  And, as I’ve mentioned in other posts here, our society is quite linear whereas recovery isn’t.  It’s very hard work but it can be done.

The article includes techniques for anyone to reinforce the behavior they are hoping to change ranging from overeating to organizing their office to preparing for Christmas.  I think this article would be a great tool for people beginning the process of trying to understand some of the “mechanics” that underlie getting into recovery.

A Swan of a Different Color

I've spent two days mulling over the movie (this next link provides a psychological discussion of the movie and has a couple of spoilers)  Black Swan, which is definitely not the original ballet Swan Lake although the music and the back story are somewhat similar.  In fact, there's been a more recent ballet that places men in the traditional lead roles.  The movie was beautifully done and beautiful.  It was also horrifying.

When I was a little girl (in 1950), my parents signed me up for ballet lessons.  I remember the shoes (by no means was I on my toes then) and the little outfit I wore although I cannot find any photos in my parents' vast collection that would give me any further memory of this.   However, shortly afterwards we moved to Colombia where I was introduced to something like gymnastics but I never returned to ballet.  Until I was in my late teens, I was quite short but otherwise had the slender figure for it.   I've always loved to watch ballet even though I never developed an aptitude for it.

So, when I heard about Black Swan, I wanted to see it in the theater for a larger than life view.  Whew!  A larger than life view it was.  And, I will say right up front here that I do not recommend that anyone see this movie if they are not solidly in recovery from an eating disorder.

This movie reminded me of my growing up experience with Gulliver's Travels.  When I was a little girl, the story was just that, a story.  When I reached junior year in high school, suddenly the story turned into a not so pleasant analysis of people (to make a long story short).

Black Swan became the same for me at several levels.  There is the story of a young woman who wants to be perfect and is compulsive about her work to get to that place.  There is the story of a young woman who is caught up in the requirement to have a lithe body, and what that means in terms of eating or not eating, in this case.  There is the story of a young woman who is striving to separate herself from the girl her mother sacrifices herself for in order to become the independent woman who needs to "let go" and have a life of her own.  Her struggle incorporates other behaviors often seen in those who also have eating disorders and Borderline Personality Disorder.

The mother especially embodied all the horrible theories that have been prevalent in the field of brain disorders -- the person who totally lacks boundaries and is responsible, it used to be/continues to be said, for signs and symptoms of illnesses like schizophrenia and eating disorders.

The struggle that involves the metamorphosis into the young woman we see on the screen is amazing and chilling and the ending left my husband and me totally exhausted, probably because he and I have been far too close to what we saw on the screen.  I suppose that some of us could even interpret the Black Swan to be the wicked ED.  Natalie Portman played this role to, forgive me, perfection, as did Barbara Hershey, Mila Kunis, and Winona Ryder among others.  I believe I have not given away too much here.  Again I would not recommend this movie for anyone who is not totally in recovery.

A Teenager's Brain

Newsweek Magazine has just published another article in the December 16, 2010 issue written by Russ Juskalian about the teenage brain, this one titled "The Kids Can't Help It."  As research continues about the vulnerability of the brain during the maturation process, I hope that more parents will read this information or learn it from their pediatrician or from others to learn how to facilitate their child's journey to adulthood.

"If you really knew me, you'd know that ...." - for parents to consider

"If you really knew me, you'd know that ...." is the title of a thoughtful link on the Something Fishy website and a segue to another post that was shared this morning by Kathleen McDonald of the Eating Disorders Coalition who continues the challenge of persuading our country's legislators to pass the FREED Act, among other things. 

 The link on the Something Fishy website lists some statements shared by those who are and/or were in the throes of an eating disorder.  I think it's important for parents to carefully read through these and just ponder that these thoughts are real to the person even if they do not make sense or seem possible to those who love her or him.  I am not suggesting that you show your loved one the list and ask something like, "do you really feel this way?"  Rather, these statements are a starting point from which a parent can become an ally with their loved one against the eating disorder.  These statements are relevant whether your loved one is still a child or now an adult.

The post by Kathleen McDonald is a presentation she made in 2002.   This is her story; this is her experience.  It is intense yet helpful to understand what goes through the mind of a person with an eating disorder.  I'm reprinting it here with her permission:


"Fighting for Survival: When Treatment Becomes a Matter of Life or Death
Kathleen MacDonald, person recovering from an eating disorder
June 13, 2002

My name is Kathleen MacDonald and I am here before you today to talk about the total devastation and destruction an eating disorder brings upon one’s life, and why equal coverage for treatment of eating disorders is so desperately needed.
It is impossible to condense 60% of my life down into just 10 minutes. I don’t know if I should start at the beginning or begin with where I’ve ended up as a result of having anorexia – which would make the biggest impact on your thoughts? Regardless of where I begin, when I finish, I hope you understand how simply an eating disorder oftentimes begins, and how my life digressed to the devastated plight it is in today because of a simple beginning. You need to hear these details not for the sake of feeling compassion for me specifically, but to know that I, Kathleen Ann MacDonald, a daughter, a granddaughter, a sister, a niece, a girlfriend, a sister-in-law, a best friend, am only one among seven million, nine hundred ninety nine thousand, nine hundred and ninety nine other Americans whose lives bare too close a resemblance to the hell I have lived through day after day for the past 16 years. I hope the details you hear from me today do not make you pause to think about someone you know and love who suffers from an eating disorder, but chances are they will. I hope my words convey to you the misery those of us with eating disorders live through every day; both during the disease and throughout recovery. I hope my words bring you closer to understanding what this mental illness is truly about. And what I hope my words do most today, is convince you to follow the outstanding example of so many of your colleagues, by pledging your support for mental health parity.

Sixteen years ago I watched a movie called, “The Best Little Girl in the World”. Those of you familiar with the movie know that it is based on a young woman who falls victim to anorexia. In the movie, she gets ‘sick’, gets an exorbitant amount of attention, gets taken to the hospital where she makes new friends, and gets better by the end of the two hour long movie – her family and friends acknowledging her more, and her life going on more beautifully than before. The movie made anorexia look easy and attractive. This movie, coupled with all the other messages I received from media, friends, and family, compelled me to take a simple step the next day that would change the rest of my life.

The day after watching the movie, I threw away my lunch for the first time. I was twelve.

The next time I remember eating lunch was 16 years later. You may not believe that I can remember the exact day, but the reason I can recall exactly when I ate my next lunch is I actually called my mother to tell her I was eating lunch. Most people at my age don’t call their parents every time they eat something – they call to tell them about a job promotion or a raise, or to tell them they’ve completed a graduate program. I called because I’d eaten half a cup of soup. It was the first time I ate during the day (outside of a hospital setting) in sixteen years.

I was scared to death that I’d just eaten a ½ cup of soup – part of me wanted to rejoice in feeling healthy, but most of me, having lived without being healthy for so long, did not even know how I was going to go into work that night with a full stomach. I was crippled by the fact that I had food in me and that I would have to be seen in public having just eaten. I was crippled by these thoughts, knowing they were crazy. And I was crippled by the sickness that wouldn’t let me let go of these crazy thoughts. It is a vicious circle that doesn’t let go of your mind once an eating disorder takes control. I called into work sick.

That night I started thinking about what a waste my life had become. I started thinking what a waste I’d been for sixteen years– focused solely on food and whether or not I was fat, disappointing my parents, disappointing myself, disappointing family, losing friends, losing best friends, losing boyfriends, having to leave college, re-entering college and being asked to leave again, losing jobs because I was always sick, lying all the time, depleting my finances, and seemingly never able to get rid of the awful disease that controlled my life and made me miserable.
I finally came to the conclusion that day, that if I couldn’t get better, I didn’t want to live any longer. I wanted nothing more than to die because getting better seemed to be harder than being sick, and the toll anorexia had taken on my life seemed to be greater than my will.

I was compelled to kill myself because of a ½ cup of soup.

Just when I thought I had made a breakthrough in my sickness by eating, my heart sank. The thought of having to live this way for the rest of my life, was unbearable. I was caught in the game anorexia plays with you and won’t let you win on your own. I needed to eat to live, but I couldn’t live with eating. The absolute control this eating disorder retained over my every thought, my ability to like myself, my power to function in any capacity within society, was just that; absolute.

Unlike what I saw in the movie when I was 12 years old, I realized, yet again, that this disease isn’t simple or pretty. The thinness you sustain from being anorexic gets you nothing. I looked at my life, consumed in the torment of contemplating suicide because I’d eaten some soup, and saw the devastation of the disease all around me.

Imagine waking up every day for two years not wanting to wake up in the first place. And then, when you do wake up it is to a life filled with disappointment and regret. The reality of having had anorexia for 16 years had set in. I lived for so long up until that point thinking that my thinness would reward me for all the years of pain. It didn’t.

What it did bring me was over $60,000 worth of debt - that doesn’t include what my parents spent. Twice my parents hospitalized me in a 28-day program costing upwards of $1,000 per day. They paid for therapy sessions – not just for me, but for themselves and for my sister because my anorexia destroyed my entire family’s life, not just mine. I depleted my IRA’s, my mutual funds, and my bank account. I used this money because I couldn’t seem to keep a job for more than a year at a time, and when I did hold a job, I called off sick so often that my paychecks didn’t amount to enough for rent. Because of so many years of being sick, therefore calling off from work constantly, therefore increasing my debt, I now fight every single day trying to figure out what to do – to simply manage. Last week I called a lawyer to discuss bankruptcy; he advised me to file. Bankruptcy is not something one normally associates with anorexia. I know I didn’t, but now I do – every day.

I did have times when I thought I was strong enough to go to therapy and hopefully get rid of this disease. So I made appointments. I canceled most of the appointments - for a couple of reasons. First of all, the overpowering thoughts I had that I was too fat to be seen by anyone, or that the therapist would think I was too fat to be anorexic, prevented me from going. The other reason I canceled appointments, which I needed so that I could stop the insanity of feeling too fat to be seen by anyone, was cost. Most therapy sessions cost $110/hour, sometimes more.

Because of anorexia, I am still in college. I now pay for tuition on my own because my parents grew tired of watching me waste their money when I had to withdraw from semesters because I was sick. I cannot receive financial aid from the government because I defaulted on a student loan, because I couldn’t go to work enough to earn enough money. I cannot receive a loan from a bank because of defaulting on my student loan.

This is only part of the vicious, cyclic toll anorexia has taken on my life. I wake up knowing that if I continue being sick I will die. I wake up therefore, wanting to go to therapy so I don’t die and become a statistic. But, because I haven’t been able to afford therapy for so long, I feel too fat to attend sessions.

I do not want to live my life as a result of anorexia; I want to live my life beyond anorexia and all the years of torment and mistakes made. However, I am scared that I might have been sick for too long now, and I wonder if the costs of anorexia will force me to become part of the 2-5% statistic of eating disorder victims who take their own life.

This is the reality of anorexia. It does not resolve itself easily like in the movie. It is not simply about being thin or getting attention. It is a exhausting mental illness and those of us suffering need help. My life is an emotional, financial, social, and familial conundrum as a result of anorexia. Every day I toggle between starting back up with anorexia (sure suicide) because I have created so many messes in my life, or continuing to try and plod through the cement-like consistency of this nightmare anorexia brought me, that only seems to thicken every day I remain alive.

I never dreamed that throwing my lunch away one day would 16 years later result in me seriously considering suicide– for two years, every day, all day.

I am one of many millions of reasons you need to support mental health parity."


Some people think that recovery is a matter of just quitting.  By the time most parents discover that their loved one has an eating disorder, the eating disorder is already on its way to totally taking over the life of the person.  This situation is a medical emergency.  It's not a matter of "just quitting".  It's a matter of medical attention, re-nourishment, and assistance (not only for the person with the ED, but also for the family members to help them help him/or her).

Others think one can never be in recovery.  I'm here to tell you that one can be in recovery.  I am.  Kathleen is.  Others are.   One can be recovered.  Believe it.  At first your son or daughter may simply need to believe in your belief before they go on to actually believe it themselves.  Your belief is critical and something for them to hang on to as they start on their way.

Reflections on life

Sometimes life takes my breath away.  

Last week, after reading Laura's soapbox offering that morning, I set aside my plans to write more about nutrition and specifically serotonin, to think about my own loved one's struggle and how impossible life would have been without the work that has been accomplished in the world of eating and brain disorders since the diagnosis in the late 1980's.  How much more needs to be done.

Then, the following day I was shocked to read an obituary in our local newspaper that revealed the accidental death of a woman in her prime; a loving, nurturing healer who brought a ray of sunshine into my and others' lives.... and so much more.  Who many in reflection on her life have called an angel for she shined a light on a path for the rest of us.  Who was younger than I but in many ways wiser and older.  Her life and story is not related to the current subject matter of this blog.

I have not been able to write here until today.  She, too, was among our best and brightest and I will miss Marta Kellogg. 

Among our best and brightest

Several years ago, when I was working on a project that needed funds, a colleague of mine suggested I focus on the economic benefit the project would offer to society.    I revised the presentation with economic benefit in mind and noticed that more attention was paid to the proposal.   Later, when I was involved in a major overhaul where I worked, I advised people to do the same and in the process saw ideas, projects and even departments benefit from that change.  The bottom line matters to many people when they are attempting to balance their own budgets.  It’s wise to determine what is valued and point to that value.

This was on my mind this morning when I learned that another battle for the life of a loved one with an eating disorder was lost.  This was on my mind when I heard Lynn S. Grefe, Chief Executive Officer (New York) of the National Eating Disorders Association (NEDA), say that the stage in New York’s Central Park wasn’t big enough for the families who came to represent their lost loved ones at the walk.    

This thought is actually on my mind daily as I learn of people with illnesses ranging from cancer to eating disorders to other brain disorders like schizophrenia who have died from lack of health care, expertise, continuing education, funds, and a host of other variables including sponsored research and especially time.

Pause for primal scream!!!!!!!!!!!!!!!!!!!!!!!!

How does one put a value on a human being?  I know this happens all the time in courts in accident cases, for example, but when you get right down to the nitty gritty, how in the world is it really possible to quantify – in our case – a beautiful (inside and out), brilliant, compassionate, multi-talented, loving human being who can offer the world a mind that could change it.  Who was handed to me immediately after birth and who nursed at my breast.  Who laughed and sang and played beautiful music.  Who, in this person’s case, majored in psychology, minored in math and business, and took every single darned course in architecture even though not admitted into that specific program.  Who can write exquisitely.  Who is still, after more than twenty years, courageously struggling so hard.  How does one quantify this?

Multiply this one person who is struggling against an entrenched eating disorder the claws of which go very deep by hundreds of thousands if not millions of people who in their own way with their own special talents and energy and passion could change the world into a better place.

How does one quantify this?  How can we, the parents and friends, present this information to the policymakers, the rainmakers and the tycoons of the world so they can hear, be persuaded, and pass legislation and/or open their bank accounts to help those families who desperately need the funds, knowledge, health care and the expertise (for themselves and for their loved one) to provide a way out of the terrible pit that eating disorders cause? 

 

Somehow, some way,  it must be done.  I know we can.

Update on research on oxytocin

Perhaps the tipping point has been reached re study of oxytocin.

I've written about oxytocin here earlier.  I'm excited to see the latest research in MSNBC's "My Health News Daily."  Here are some known effects of oxytocin.  There certainly are ways to increase the natural amounts in our bodies, for example massage. 

Children and eating disorders

I just came across this entry in the Huffington Post, added the link to my "Of Note" collection, and provide a link here, too.  The article, titled "Eating Disorders: Identifying Warning Signs in Children",  is written by Melinda Hutchings.  Not only does she note the signs to watch for but also provides valuable tips on how to interact with your child to actually see these signs in action.

Since 60-65% of those who began to fight anxiety disorders early in life go on to develop eating disorders, this is an important addition to the parent tool box.

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.  

Nutrition: Answers to Anorexia by James M. Greenblatt, MD

James Greenblatt, MD, is the author of a recently released book titled Answers to Anorexia - A Breakthrough Nutritional Treatment That is Saving Lives (Sunrise River Press, 2010).    You can learn more about Dr. Greenblatt here.

As noted in the introduction (p. vii), "This book aims to help you understand how nutritional deficiencies affect brain function and the expression of genes, and their relationship with anorexia nervosa."  He goes on to write, "Nutritional deficiencies with anorexia nervosa?" Is this a ridiculous question?  Perhaps, but nutritional deficiencies are still an obvious and neglected component of our current treatment model."

When I first joined the website Something Fishy I was struck by the number of posts by a woman -- I'll call her M -- who constantly reminded those of us who read what she had to say that we needed to think about adding zinc as well as Omega-3's and other supplements to our loved ones' meal plans.  She also offered a lot of information, care and concern to those of us who were new to the world of parental support.  I had up until this point heard and read about feeding one's loved one at home but had understood there to be more focus on finding ways to get calories into the equation but less on specific nutrients as well as why properly balanced nutrition is so important.  Of course my mindset at first was to help my loved one get into treatment so that a knowledgeable team of people could help her regain her weight and hopefully her health.

It's clear to me that there's more to weight gain than just calories.  Dr. Julia O'Toole's Give Food a Chance and Dr. Greenblatt's book offer a more in-depth view.  These two books as well as the information provided to me by Martie Fankhauser as well as my own doctors including my general practitioner, gynecologist, and pulmonologist -- who all now inquire if I'm taking the supplements I'll be mentioning --  offer guidelines to help us help our loved ones and ourselves.

Nutrition: Vitamin D

My closer look at nutrition actually began by looking at myself and thinking back.  I have a hunch that those who develop eating disorders genetically are either more susceptible to the effects of lower levels of specific nutrients in the body or, in my case and perhaps my daughter's and indeed my mother's, our genetic make up makes us less able to either maintain or produce the levels we need.

Having lived overseas for so many years where holistic care was more likely, twice I was given Vitamin B-12 shots (more on this vitamin later) and part of my getting into recovery package included (inadvertently because I didn't understand the connection at the time) adding specific vitamins and supplements to my diet when I was in my early thirties at the recommendation of a long-time runner who researched nutrition extensively.  I honestly do not know if my body developed these deficiencies because I had binged and purged for years or if I was deficient in the first place.  I think it would be interesting to test young girls whose mothers have recovered from an eating disorder or are still battling on to see what their levels are.

I also recommend two important books to supplement (sorry) this discussion.  The first is by James M. Greenblatt, MD titled Answers to Anorexia - A Breakthrough Nutritional Treatment that is Saving Lives (Sunrise River Press, 2010).  The second is by Dr. Julie O'Toole titled Give food a chance: A New view on childhood eating disorders (Perfectly Scientific Press, 2010).

And, again, I'm including information provided to me by Martie Fankhauser whose information I provided in the introduction to this series of posts, titled Nutrition, Nutrition, Nutrition.

This morning's Wall Street Journal article, "Triple That Vitamin D Intake, Panel Prescribes" by Melinda Beck found in Section D - Health (pp. D 1-2) helps me seque and pretty much covers a lot of what I was going to say about Vitamin D including the fact that it's really a hormone and we ordinarily do not get enough of it.  Why?  Because for years now we've been advised to stay out of the sun and slather on the sunscreen which means our natural means of creating this hormone in our bodies has been curtailed.

The article notes that the recommendation to increase the daily amount from 200IU's to 600IU's is to respond to the need for bone health.  Yet, as many doctors will tell you (and which is why so many test their patients and advocate for at least 1-2,000 IU's a day -- mine did shortly after the release of the Scientific American article in 2007), D does a heck of a lot more than just help keep our bones strong.

Scientific American was among the first publications to highlight the importance of Vitamin D noting that Vitamin D has anti-inflammatory and immune balancing functions.   Here are links to two articles:  the first in 2007 and the second in 2009.

Others have focused on Vitamin D and brain function.  An article was just published linking low levels of Vitamin D in mothers to schizophrenia in their children.  I hope more research continues in these areas to learn links between nutrition and neurotransmitters, including serotonin (more on this coming up, too).

Not only that but we must have cholesterol -- the incredible edible egg -- to naturally synthesize D in our bodies and since sunscreen pretty much blocks that natural conversion process, doctors are advocating for supplements.  And principally D3.  Vitamin D can be monitored by a blood test and one should ask for the 25-hydroxy Vitamin D level.  Annecdotally, although a level of 30 ng/ml is considered normal by most experts, those who work with clients who are depressed advocate a level of >50 ng/ml.   As we are all an experiment of one, so to speak, it's important that our levels be tailored to our needs.  Encourage your doctor to test you again a few months later to see if your levels have risen and to make certain that your level isn't approaching toxic levels.  Again, this is a matter between you and your doctor(s).

I was very pleased to see that among the tests required for my loved one at this most recent facility was for her level of 25-hydroxy Vitamin D level.  I encourage all parents of those with loved ones with eating disorders to add this test to the list during that first visit to the doctor.

P.S. A few minutes ago I indulged at our local Starbucks and picked up a New York Times.  Same report; different take.  The Institute of Medicine has recommended the tripling of the current acceptable amount from 200 to 600 international units to the agreement of many.  Yet those interviewed by the New York Times were not among the representatives of several medical groups like the Endocrine Society and the International Osteoporosis Foundation.  These groups indicate that 30 ng/ml is necessary for optimum bone health.  As noted in the Wall Street Journal, "...despite the paucity of randomized-controlled trials, the long list of chronic diseases associated with Vitamin D does make sense, given that it is actually a hormone that affects virtually every organ in the human body and regulates as many as 2,000 genes."

Finally, from the table in the WSJ (p. D2) those who need extra Vitamin D include "....people age 50 and older (our bodies are less efficient in synthesizing the vitamin); people with osteoporosis; people with limited sun exposure; people with dark skin who have moved to less sunny climes; people with fat malabsorption [this is the one that caught my attention given that those with anorexia often refuse to eat any fat] due to, for example, pancreatic enzyme deficiency, Crohn's disease, cyctic fibrosis, celiac disease, surgical removal of part of the stomach or intestines and some forms of liver disease; people taking certain medications; and people who are obese."

Update:  Wall Street Journal, 12/7/2010, p. D3 carries an article titled "Can Vitamin D Replace Flu Shots?" by Laura Johannes.  The article reviews what is known about Vitamin D (actually a hormone).  Vitamin D apparently promotes our immune system's ability to fight off disease - specifically by "....stimulating production of cathelicidin, an antimicrobial protein that serves as a 'natural antibiotic' in the body, says Michael Zasloff, a professor of sugery and pediatrics at Georgetown University Medical Center in Washington, DC."  The article focuses on the idea of taking enough Vitamin D to replace flu shots.  Other studies noted in the article refute this possibility in that those taking the vitamin statistically got the same number of infections as those who didn't.  

My hunch is that one's Vitamin D levels in the body as a result of metabolism and other processes is part of what matters.  Just because you ingest it doesn't mean your levels will necessarily rise.  There are many factors, but I believe that Vitamin D is part of the picture.

Nutrition, Nutrition, Nutrition

Wow!  I have an information headache.  And, it's a good headache to have.  I just spent an hour with a woman I worked with years ago when she, a professor of Pharmacology, was a member of the University of Arizona's Commission on the Status of Women and I was the Program Coordinator Senior for that group as well as the UA's Diversity Action Council.  I've met so many people over these more than sixty years of my life whose path(s) I find I am crossing again.  There must be a reason.  And this crossing of paths is fortuitous.  It also started with a flyer about a nutrition/pharmacology/psychiatric pharmacology oriented seminar that she was offering.  I could not attend due to a conflict so I made an appointment for a personal consultation with her.

But, first more about Martie Fankhauser, so you'll understand why I'm bringing her to this blog.  From her website to which I linked below:  "Martha (Martie) P. Fankhauser, received a Bachelor of Arts degree in biology in 1972 and a Bachelor of Science degree with distinctions in pharmacy in 1974 from the University of Kansas. In 1982, Ms. Fankhauser completed the Master of Science degree in hospital pharmacy at the University of Arizona and a one-year specialty residency in psychiatry. In 1997, she became a Fellow of the American Society of Health-System Pharmacists (FASHP) and was Board Certified in Psychiatric Pharmacy Practice (BCPP) in 2000 by the Board of Pharmaceutical Specialists.

Ms. Fankhauser was a Clinical Professor in the Department of Pharmacy Practice and Science at The University of Arizona College of Pharmacy from 1982 to 2010 (retired July 2010). She was the program director for the ASHP accredited specialty residency program in "Neuropsychiatric Pharmacy Practice: from 1993 to 2004. She trained 12 pharmacy specialists in the residency program and was a preceptor to over 24 Pharm.D. students each year in the psychiatry/ neurology/ pain clerkship program. She was involved in coordinating the Annual Neuropsychiatric Pharmacology Update in Arizona from 1994 to 2005."

You can read more about her and what she does here and also here.

I consulted her for three reasons:  first, as I've shared, I am in recovery from anorexia/bulimia probably based in life-long dysthymia (a form of depression) and I believe firmly there is a genetic basis to my disorder as well as a psychopharmacological/biological result; second, because the celexa I started taking late last Spring interferes (I believe) with too many other pieces of myself so I wanted to find out why; and third, because I wanted to get her take on the entire issue of drugs for those with eating disorders, including my loved one.

As I said, I came home with a good headache because I now have a heck of a lot of information to process.  It is said a little knowledge is a dangerous thing.   So, I'm being very careful here but also believe I have a tremendous background of acquired information through my early training in nursing until I changed fields as well as my life-long interest in medicine and more recently voluminous study and reading in neuropsychology/eating disorders/mental illness/brain disorders.  So I think I might have something to offer to others by distilling what I've learned, including today.

Because I am in recovery and because I am taking a medication that I am experiencing to interfere with other aspects of my life/mental health, I decided to learn more about the interaction of medications and nutrition with the neurotransmitters active in our brains.  What I came away with leads me to make three observations:

First, as many are saying but I don't think, based on what I've been reading, that many understand the extensive ramifications about what they're saying, which is nutrition is key --  including nutrition before birth and for the first three years after birth, especially, until the child eats a full complement of protein, complex carbohydrates, and fats.

Second, more needs to be understood by those prescribing medications like antidepressants and mixing those with other meds  that affect our brain and other bodily mechanisms including, for example, blood clotting ability;

And, third, I am delving deeper into why I believe the term eating disorder needs to be done away with and replaced with a term that better communicates what is going on in our vastly complicated psychophysiological make-up when genes interfere with proper balance.

Whew.  As I said, I have an information headache.

So, I am going to start in my next post with the first point about nutrition and explain some of the things I learned this morning including the point that registered dietitians (look for those initials, R.D.) must have this information in their training programs if they are to adequately treat those with eating disorders.   I believe my comments will again (as so many others have likewise contributed) underscore the value of the Maudsley Method in terms of the scope of nutrition.  I do not mean to say that the behavioral information is secondary; far from it.  Those who undertake this at home must have guidance and the tools to make it work.

However, it's not just about the food we put in our mouths and our loved ones' mouths.  It's what is in the food and what the food provides and what the appropriate balance of food is doing to keep our bodies -- our systems -- working well so we are healthy and our behavior is to our benefit.

And, I am also advocating for the inclusion of the information that Martie Fankhauser provided to me today in forthcoming NEDA conferences as well as IAEDP and others' gatherings.  I believe that the knowledge she has will add much to the progress being made in the field of Eating Disorders.

Inside The Teenage Brain

I'm always excited when I see an article in the Mass Media -- this time, Parade Magazine accompanying today's Sunday paper (Sunday, November 28, 2010) -- that presents an up-to-date description of how the teenage brain works and how vulnerable it is to assaults, so to speak, by things like alcohol as well as to impulsive thoughts, among other things.

Today's article What's Really Going On Inside Your Teen's Head by Judith Newman pp. 4-6 is very important.  The content also illustrates why it's so difficult to distinguish, at this age, between behaviors associated with some brain disorders and plain old teenager-hood that I used to call testosterone poisoning when it came to adolescent male behavior.  I never figured out a term for what I went through (in my parent's eyes although I was sent away to boarding school which may have been the best solution for all of us) or what my daughter went through.  We were different and yet we both developed eating disorders.

Basically, the teenage brain is different.  Or rather, the teenage brain is still developing as PET scans as well as fMRI's are illustrating.  Not only that but the human brain isn't done baking, so to speak, until one is well into one's twenties and in some cases early thirties.  The prefrontal cortex is the last area of the brain to develop!!!

So, what is going on in there?  and will it be possible to work with a pre-teen and a teen to develop skills to prevent eating disorders from developing?

P.S.   Later today I remembered one of the comments I continued to hear at the NEDA conference, which was that many parents couldn't get a handle on the information provided because it was too technical.  Perhaps at the next conference there might be an opening seminar on the brain that describes the different regions in a layperson's terms and what those regions do.

P.P.S.  Carrie Arnold's book Decoding Anorexia (Routledge 2013) includes a chapter on the brain's regions in layperson's terms.  Chapter 2: Interoception and the Insula, pp 22-37.

More ramblings about set shifting

Dr. Kate Tchanturia's recent appearance and presentation at the October NEDA conference in New York City  on Cognitive Remediation Therapy as well as set shifting has continued to intrigue me.  I came across this thoughtful post the other day about set shifting as a bio-marker for eating disorders.  

Whether my meager ability to use a qwerty keyboard on a cellphone although I can type lickety-split on a regular keyboard has anything to do with this, I'm not sure.  But it would make sense.  I simply cannot translate my ability to use all my fingers on the keys to the hunt and peck approach on the tiny cellphone.  My index finger has a set range of keys my brain looks for, I suppose, on the qwerty.  Yet if I'm using my "old fashioned" cellphone with the accustomed digital display, I have no trouble using my index finger to punch out any combination of letters and numbers.....

Another perspective is that I'm exercising my brain by learning to do something new and setting up new pathways.  Another good exercise is to periodically use your computer mouse with your left hand (if you're right handed).  I really want a Smart Phone.  Guess it's going to take some effort.  My husband's Blackberry keyboard is entirely too small for my bifocal necessity eyes, however.

Why Do You Eat?

Many people will probably answer this question with, “….because I’m hungry.”

Others might launch into a physiological discussion about the mechanisms of hunger and metabolism or about the principles of nutrition. 

But, really, why do you eat?

Earlier on this blog I wrote about Dr. Cynthia Bulik’s terrific book, Crave.  Here’s the link. 

I just finished reading Intuitive Eating: A Revolutionary Program that Works by Evelyn Tribole, M.D., R.D. and Elyse Resch, M.S., R.D,. F.A.D.A. (St. Martin’s Press, 2003).  The book has been on my shelf for awhile, now.  I ordered it after reading comments about it on Facebook as well as Something Fishy.  I had planned to read this book next having finished Dr. Julia O’Toole’s Give Food a Chance and Dr. James Greenblatt’s Answers to Anorexia.   I’m still reading on the topic of nutrition and hope to write more next month but it was important to me to get started on this concept.

When it was clear a few weeks ago that another residential stay for my loved one was necessary, I knew that not only was willingness a must but also a new approach was needed.  When I started reviewing the website of the residential treatment center where my loved one is and that was recommended by her personal therapist, I discovered that the philosophy of Intuitive Eating was integral to the program.  So is the clear acknowledgment that nothing can be accomplished without the person re-achieving a level of nutrition necessary to understand and utilize information.  Again, if the brain is malnourished, the person will find it extremely difficult to learn about and adopt new behaviors.  Medications aren’t very effective, either.  Nutrition must come first.  And, this can take time especially for a person who fears food.

But first, a digression.  I firmly believe that our advertising industry can totally overwhelm one’s ability to honor one’s body/one’s self/one’s hunger.  For those who are predisposed to an eating disorder,  what one sees, hears, and reads on websites with advertisements, on television, in magazines, as links to, for example, Facebook, etc. subtly provides messages that are difficult to ignore.   I think, if one contemplates the question that is the subject of this essay, many of us don’t really have the time to think about it anymore.    Lives tend to be busy and even chaotic.  Meals are taken at the counter in the kitchen or at the drive-thru window or separately when work hours vary or pulled lukewarm from the refrigerator later in the evening. 

It came as an enormous surprise when my husband and I took a trip about three years ago thanks to an award by his company for work well done.  He called me and asked if I’d like to visit Florence.  I paused, wondering what in the world (no offense intended) I might find in Florence, Arizona, that would propel me to say, “yes.”  In fact, I said that.  He laughed and said, “Florence, Italy.”  I was speechless.  This was one of our hoped-for retirement trips that was beginning to seem less likely given all that was going on.  We spent a week there. 

Why am I mentioning this?  Because for the first time in years – seriously – we both came to appreciate  again  (as did everyone we saw, whether tourists or natives) taking time out to sit down and enjoy a leisurely, delicious meal, even at lunchtime.  We savored not only the cooking, but the company, all week long.  One night, on our own, we asked the concierge for recommendations and he steered us about four blocks away to a tucked away place where we arrived only to find out that dinner didn’t start until 7 pm.  No problem.  Other knowledgeable patrons-to-be arrived with cups, a bottle of wine, and some delicious bread which they shared.  We joined them for dinner and had a wonderful time.  I came to appreciate the concept of intuitive eating (although I didn’t know that term).  Neither of us ate too much (one of the reasons being that portions weren’t preposterous) nor did we gain weight.  Everyone took their time.  No one hovered over our table like a vulture waiting to pounce on the first empty plate to hurry us along.   Rather, we enjoyed the experience of eating what and how much we needed and wanted.  It was amazing.  The whole trip was, actually.  A photo was taken of us during the week that we framed.  One of our relatives wondered who the man was in the picture!  My husband looked so relaxed and so happy.  So did I.

So, what is so special about Intuitive Eating?  Why did this book remind me of things Dr. Bulik mentioned in Crave?  Why do we eat?  Why is this important for those with eating disorders?

If your loved one has been diagnosed with an eating disorder s/he has been restricting or has learned to use food in a way that is not healthy, in fact dangerous.  S/he has lost the innate sense of the feeling of hunger that s/he came into the world with.   Your loved one needs to learn how to eat again using techniques that lead to healthy living.  This isn’t an overnight thing; it takes time.

The authors propose ten principles to intuitive eating (pp. 2-29):  “Reject the diet mentality; Honor your hunger; Make peace with food; Challenge the food police; Feel your fullness; Discover the satisfaction factor; Cope with your emotions without using food; Respect [love] your body; Exercise – feel the difference; and Honor your health – gentle nutrition”.  They write that awakening the intuitive eater is a process.  As I noted in an earlier post, our society is linear; the process of recovery is not.  One must be prepared for spurts and stops, for slips and falls, and for time to heal.  The authors note that there are stages to this process (pp. 30-40) and then proceed to discuss these stages in depth.  The stages are:  “Readiness – hitting diet bottom; Exploration – Conscious Learning and Pursuit of Pleasure; Crystallization; The Intuitive Eater Awakens; and the final stage, Treasure the Pleasure.”

All points are important.  I remembered Dr. Bulik’s important work about knowing yourself when I read Chapter 11 in which the authors spend time on “Cope with Your Emotions Without Using Food.”  That was a big one for me.  I did cope with my emotions using food and that behavior became a terrible addiction.  I did not trust for a long time in my ability to find another coping mechanism to take the place of binging and purging to relieve my anxiety.  Beginning to run (moderate exercise at first with thoughtful eating) became a solution for me as did a gradual sense of accomplishment.

Again, this is a process.  I like what the authors note in their Epilogue (p. 245):

“…becoming an Intuitive Eater requires a highly conscious decision and commitment.  It means letting go of the old way of surviving and opening up to a new way of viewing life.  It might take soul searching and introspective work to decide whether dieting [your eating disorder – my words] has been keeping you from your deepest appreciation of life.  Making this viewpoint change can be difficult to accomplish initially, but can ultimately become a way of living that knows no return.”

Yes!  Eat to live!

When the Financial Well Runs Dry

This post will be updated occasionally as I continue to find sites and references.  The piece includes comments following the financial section re obtaining care.
[March 2019]

I celebrated when I heard the news that with the passage of the Health Care Act, families can include their dependents on their health care plans for a longer time - until age 26.  And, your son or daughter does not need to be living with you in your home, either.  I've noticed that some private plans and the State of New Jersey (at least, there may be others) actually already extend that age until 30.  

Now, of course, one of the remaining hurdles is to provide parity in health coverage for those with brain disorders/mental illness including eating disorders.  The Eating Disorder Coalition and others are working towards that goal.  A recent decision re Wit v UnitedHealthCare written about by Steven Dunn on his blog www.adadsjourneywitheatingdisorders.home.blog  addresses this case and its ramifications.

On the insurance point, incidentally, Susan Maccia wrote an article for the Parent and Family Network Newsletter Fall 2011 issue titled, Insurance 201:Single Case Agreements outlining how to obtain special clearance for out of network treatment or out of state (e.g.) treatment.  There is precedent for this, even within Medicaid.

Here's a link to one woman's successful journey to effect change in her state (Missouri) as well as to obtain treatment for her daughter.  Annie Seal's story provides important tips on how to proceed.
 

In the meantime, and until your state or country enacts changes in the law to require insurance companies to pay for whatever treatment is necessary, what's a family to do when private health care coverage is not available for their adult loved one?  The Wall Street Journal among other media has occasionally run articles about people who have needed to declare bankruptcy upon exhausting all their funds.  Other families, whose members have working years ahead of them, have  chosen to completely decimate their retirement plans in favor of keeping a loved one in treatment.  What about people who are still in this battle and are retired or disabled themselves or literally cannot afford to exhaust their retirement funds.  What are other possibilities?

The first is to sit down and take a complete look at your financial picture and your age and ability to keep working.  If you're reading this, you have access to a computer and to sites like those offered by eg MetLife (there are many more and this is not an advertisement; I just happened to see it in the paper) or you can purchase software like Quicken  that has a planning retirement function to analyze what you'll need to live on post-retirement. 

This is an important step, too, because you need a complete picture with which to work when you do negotiate with residential facilities, many of which have funds set aside to help families whose means are not sufficient.  Do not hesitate to ask for help and be sure to factor things in like support for another aging family member or one with special needs.

The next is to consider treatment loans.  There are companies in this country that will work with you to finance long-term treatment.  Your doctor's office or local hospital may have literature about available loans.  edreferral.com provides all sorts of information about obtaining financial support - loans, trials, even free scholarships for the treatment of eating disorders including much of what I write about here.  For example, the non-profit organization called Project Heal also raises funds to provide assistance, if possible, to those who need it. 

A  legal ruling in New York State (legal work done by Kantor and Kantor) opens the door for support for nutritional counseling for those with eating disorders.  

At some point, there comes the time when other resources need to be considered and among those available for adults is Medicaid, SSDI and SSI, and other benefits at the State and Federal level such as Section 8 Housing and food stamps as well as private sources such as Catholic Community Services and similar church-run programs.  The Salvation Army is a resource, as well.

Your adult loved one may be eligible to apply for SSI (check on the asset limitations) or SSDI which can take time but is worth the time and paperwork. S/he should be able to find an attorney who will do this for her/him pro bono and as a compensation will receive a percentage of the declaration of support which usually is retroactive from the time your son or daughter sank into this quagmire of an eating disorder. The attorney will help your son/daughter figure this out as part of the application process.  A judge will have the final say. It's possible on at least the first go-round that the judge will deny your application. Your loved one (and you) needs to know not to give up! The attorney should know this, too, as it is not unusual.

In the meantime, if necessary for your family encourage your daughter/son to sign up for Medicaid which should be available to her/him as a low income/no income individual.  If your adult loved one has worked, s/he probably has paid into the system through payroll deduction and is eligible for these kinds of benefits. Some states offer a low cost health insurance program with a very small co-pay if the person is not eligible for Medicaid.  Many states are struggling with their own financial issues  but it's worth it for your loved one to pursue all these angles.

Once your daughter/son, should s/he choose to apply, is ruled eligible to receive SSI and begins to receive the financial assistance, her/his medicaid health coverage usually becomes part of this entire package.  Keep asking questions.  All states are different.

Your daughter/son may also become eligible for what's known as Section 8 Housing. The application process for this is also long and tedious but ultimately the cost (the rent) is subsidized.  The waiting period can be very long, however. 

Until your daughter/son obtains all/any of this assistance, s/he is going to need to find a place to live if s/he doesn't have one or cannot live with you (for a variety of reasons). S/he or an advocate (usually you) will want to check out long-term group homes or  shelters for those who have brain disorders/mental illness. If one is assigned, her/his mental health provider can help her with this. Usually these places are locked up at night and have someone who leads group sessions and that sort of thing during the early evening. Since they are run by non-profit organizations, there is usually oversight and rules. Often there are chores, so to speak, that they are assigned to do. Other options of course are group homes identified by a mental health provider or friends who are willing to share their home with your loved one for a low rent payment.  The Gospel Rescue Mission is an example here in Arizona.

Your loved one's journey may have included what is known here in Arizona as Title 36 procedures.  Depending on your State's laws, it may be possible for you to have your loved one picked up, taken to a hospital, and legally evaluated for their danger to self.  Some states prohibit this; others have a set time-line during which the person is evaluated.  

If the decision is to keep the person because of their mental/physical state, there is a time period within which next steps must be taken including a decision for a hearing with a judge.  These steps include a more thorough evaluation of, for example, their danger to self.  I'm keeping this general because there's so much variation among states.  

Ultimately, there is the possibility that the judge will rule the person to be SMI, meaning Seriously Mentally Ill, at which point the person can be assigned to a mental health provider that is by law required to oversee the mental health care and treatment of the individual. The judge's ruling may include Court Ordered Treatment. This can include treatment in a residential facility, especially if a precedent has been set.  Again, the laws vary as do the facilities.  Even where I live, those familiar with ED treatment know to which hospital one should take your loved one where they will encounter hospital personnel who are familiar with eating disorders and who are more likely to follow through with commitment and a thorough evaluation.  As I've said before, others are more inclined to simply provide an IV, stabilize electrolytes, and turn the [emaciated and endangered] person back out on the street.  I cannot begin to tell you what it feels like as a parent to watch a facility keep a loved one for only two hours in spite of the person's obviously emaciated condition and then release them.

As more information about eating disorders goes mainstream and doctors and other people in health care are educated, I believe that better and longer treatment will become available. 

Once the Court has declared your family member to be seriously mentally ill, the next step is to find a facility that has a contract with the State for this kind of treatment.  Often one does not exist.  Contact your state legislator or representative for help to find out more information.  If the person is under the age of 18, precedent may have been set by another person needing treatment for the person to travel out of state to good facilities that will accept Medicaid.  Florida, for example, has done this.  Arizona has in the past, as well. These arrangements are known as single case agreements.

Our local mental health community has collaborated in the development of a Crisis Response Center (CRC) at a local hospital where people can go for immediate help and evaluation.  Perhaps yours has done this, as well.  

Some law enforcement agencies require officer training to include working with people who have brain disorders/are mentally ill.  Others do not.  It's important for you to know what is available where you live.