National Eating Disorders Association's Parent Toolkit

Parent
TOOLKIT
NEDA TOOLKIT for Parents
Table of Contents
I.
The NEDA Educational Toolkits Story...................................................... 3
II.
About Eating Disorders............................................................................... 5

Eating Disorder Myths
Risk Factors for Eating Disorders
Emotional and Behavioral Signs of an Eating Disorder
Physical Signs and Symptoms of an Eating Disorder
Eating Disorder Statistics
III.
Supporting a Loved One........................................................................... 16

Encouraging a Loved One to Seek Help
Encouraging Your Child to Seek Treatment
First Steps to Getting Help
How to Support a Loved One with an Eating Disorder
How to Talk to a Loved One about an Eating Disorder
Talking to Young Children About Eating Disorders
When Your Loved One is Over 18 and Refusing Treatment
IV.
27
30
36
37
40
Insurance Issues........................................................................................ 43
Understanding Insurance Issues for Eating Disorders Treatment
Obtaining Insurance Benefits for Higher Levels of Care
Common Reasons for Denying Further Care
Steps to Take When Determining Coverage Allowances
Strategies for Providers for Fighting Insurance Denial
How to Manage an Appeals Process
Sample Letters to Use with Insurance Companies
Other Steps for Loved Ones
VI.
17
18
20
21
22
23
24
Treatment Information............................................................................. 26
Level of Care Guidelines for Patients
Finding Treatment for Your Loved Ones Eating Disorder
Questions to Ask a Treatment Provider Privately
Selecting a Treatment Center for Your Loved One
Treatment Glossary
V.
6
10
11
12
14
44
47
48
49
50
52
53
63
Making Sense of Neuroscience .............................................................. 64

Appetite
Body Image
Neurotransmitters
Reward
Temperament and Personality
65
67
69
72
74
Page |2
The NEDA Educational Toolkits Story

The Background
When a friend or family member is diagnosed with an
eating disorder, its often terrifying and confusing. How
did this happen to our family? Is my child going to be
okay? Will my friend ever get better? Its all too easy to
get tangled in these questions and become mentally
trapped, paralyzed with fear and unable to help
yourselfor your loved one.
Of course, no toolkit, no matter how thorough, could

possibly address the diverse range of issues that are
unique to each individual and family. Instead, our
goal is to provide a comprehensive overview of eating
disorders and treatment in one easy-to-use document.
We have provided resources for more in-depth
information that may address these unique issues.
Helping your loved one recover from an eating disorder

will take a lot of work from everyone involved. As
with many jobs, having the right tools is crucial. Eating
disorders have a steep learning curve, and you and your
family member will need to develop lots of tools to
work towards recovery.
Our goal is to maintain the usefulness of the toolkits

by treating them as ever-evolving documents. We will
continue reviewing and revising them, adding the most
up-to-date research and information. NEDAs clinical
advisors will be the primary reviewers, along with other
experts and stakeholders invited by NEDA, including
families and members of professional organizations that
will be disseminating the toolkits. If you have suggestions
for improvement, we want to hear from you!
The NEDA Parent Toolkit was created to provide some

of these tools that can be used in critical moments in
your search for help, hope and healing. As one parent
told us, this toolkit was exactly the resource we
needed when we started the journey for our family, we
needed real resources, reassurance that we were not
the only family with the challenge and that there would
be light at the end of that tunnel. The toolkits are
designed to put crucial information at your fingertips
and offer your family a range of ideas on how to best
help your loved one recover from an eating disorder.
Some of the questions you might find answered in the
following pages are:
What are eating disorders and how are they
treated?
What are signs of a medical or psychiatric
emergency?
How do I deal with school issues while my child
is ill?
What types of treatment are available?
How do I know what type of treatment will work
best?
How do I get my insurance company to cover my
loved ones treatment?
A Brief History of the Toolkits

In September 2007 the Board of Directors of NEDA
officially approved the organizations new strategic
priorities, listing educational toolkits as a new NEDA
priority fitting the new mission: To support those
affected by eating disorders and be a catalyst for
prevention, cures, and access to quality care.
Educational Toolkits were created to strengthen
NEDAs online material offerings and provide vital
information to targeted audiences. A list of audiences
was prioritized by the board and serves as a reference
for ongoing materials and toolkit development.
The toolkits were initially developed to combine
existing information with new findings to create a
complete package to assist individuals in their search
for information and help. They were meant to provide
guidance, not create standards of care, and would be
based on the best available information at the time of
development.
Page |3
The first toolkits were created with the assistance

of the ECRI Institute, an organization known for its
ability to translate complex healthcare research into
accessible, usable information. After developing
the first draft of the Parent Toolkit, NEDA and ECRI
convened several focus groups of parents to review the
document. Together with input from NEDAs Board of
Directors and other eating disorders experts, the first
Parent Toolkit was released in 2008. A revised Parent
Toolkit was released two years later.
We are currently seeking funding for the ongoing

development of toolkits, as well as distribution
and marketing. If you or anyone you know may be
interested in contributing to, sponsoring or providing
a grant to support these efforts, please be sure to
contact our Development Office at 212-575-6200, ext.
307; development@nationaleatingdisorders.org.
We hope youll find these toolkits useful and will share
this resource with others.
With the continuing advances in eating disorder

research and treatment, NEDA realized that another
more significant revision was needed. Again, the input
of parents, former eating disorder sufferers, and eating
disorder experts was used to further refine the draft
document. In 2015, version 3.0 of the Parent Toolkit
was released.
Page |4
About Eating
Disorders
Page |5
Eating Disorder Myths

Even for professionals who have been treating them for years, eating disorders can be baffling and confusing
illnesses. Adding to this confusion is the fact that eating disorders are surrounded by a large number of myths and
misconceptions. It can be difficult for some people to take an eating disorder diagnosis seriously. This section will
help dispel some of the most common misunderstandings about eating disorders and those affected by them.
You may wish to print out this section and share it with others (other family members, friends, teachers, coaches,
physicians, etc.).
Eating disorders are a choice. I just need to

tell my loved one to snap out of it.
Eating disorders (EDs) are actually complex medical
and psychiatric illnesses that patients dont choose
and parents dont cause. The American Psychiatric
Association classifies five different types of eating
disorders in the Diagnostic and Statistical Manual, 5th
Edition (DSM-5): Anorexia Nervosa, Bulimia Nervosa,
Binge Eating Disorder (BED), Avoidant Restrictive Food
Intake Disorder (ARFID) and Other Specified Feeding
or Eating Disorder (OSFED). Several decades of genetic
research show that biological factors play a significant
role in who develops an eating disorder. EDs commonly
co-occur with other mental health conditions like major
depression, anxiety, social phobia, and obsessivecompulsive disorder.
Doesnt everyone have an eating disorder

these days?
Although our current culture is highly obsessed with
food and weight, and disordered patterns of eating
are very common, clinical eating disorders are less so.
A 2007 study asked 9,282 English-speaking Americans
about a variety of mental health conditions, including
eating disorders. The results, published in Biological
Psychiatry, found that 0.9% of women and 0.3% of
men had anorexia during their life, 1.5% of women and
0.5% of men had bulimia during their life, and 3.5% of
women and 2.0% of men had binge eating disorder
during their life. The consequences of eating disorders
can be life-threatening, and many individuals find that
stigma against mental illness (and eating disorders
in particular) can obstruct a timely diagnosis and
adequate treatment.
Eating disorders are a choice.

The causes of an eating disorder are complex. Current
thinking by eating disorder researchers and clinical
experts holds that eating disorders are caused by
both genetic and environmental factors; they are
bio-sociocultural diseases. A societal factor (like the
media-driven thin body ideal) is an example of an
environmental trigger that has been linked to increased

risk of developing an eating disorder. Environmental
factors also include physical illnesses, childhood teasing
and bullying, and other life stressors. Historical data
reveals that some of the earliest documented cases
of eating disorders were associated with religious
fasting. Additionally, they may run in families, as there
are biological predispositions that make individuals
vulnerable to developing an eating disorder.
I need to figure out what I did to cause my

childs eating disorder.
Organizations from around the world, including
the Academy for Eating Disorders, the American
Psychiatric Association, and NEDA, have published
guidelines which indicate that parents dont cause
eating disorders. Parents, especially mothers, were
traditionally blamed for their childs disorder, but
more recent research supports that eating disorders
have a strong biological root. Eating disorders develop
differently for each person affected, and there is not a
single set of rules that parents can follow to guarantee
prevention of an eating disorder, however there are
things everyone in the family system can do to play a
role in creating a recovery-promoting environment.
Psychologists have seen improvements in the speed at
which children and adolescents begin to recover when
including parents in the treatment process.
Its just an eating disorder. That cant be a big

deal.
Eating disorders have the highest mortality rate of any
psychiatric illness. Up to 20% of individuals with chronic
anorexia nervosa will die as a result of their illness.
Community studies of anorexia, bulimia, and eating
disorder not otherwise specified (EDNOS, now called
OSFED) show that all eating disorders have similar
mortality rates. Besides medical complications from
binge eating, purging, starvation, and over-exercise,
suicide is also common among individuals with eating
disorders. People who struggle with eating disorders
also have a severely impacted quality of life.
Page |6

Anorexia is the only serious eating disorder.
When researchers examined the death rates of
individuals with any eating disorder diagnosis who were
being treated as outpatients, they found that bulimia
and EDNOS (now OSFED) had mortality rates that
approached the high rates seen in anorexia nervosa.
During the study, roughly 1 in 20 people with eating
disorders died as a result of their illness. Individuals
who abuse laxatives or diuretics or force themselves to
vomit are at significantly higher risk of sudden death
from heart attacks due to electrolyte imbalances.
Excessive exercise also can increase the risk of death
in individuals with eating disorders by increasing the
amount of stress on the body.
Since I dont see my loved one engaging in

eating disordered behaviors, I dont need to
worry about them.
Many eating disorder sufferers go out of their way to
hide symptoms of their illness, either out of shame or
because they are afraid someone will make them stop.
Its not uncommon for loved ones to be caught off
guard at how severe and pervasive the eating disorder
behaviors are when a diagnosis is made or when people
close to the sufferer become aware they are struggling.
If you are aware a loved one is struggling it is important
to express concern, with empathy and compassion, and
encourage the individual to seek help.
My loved one isnt ready to recover from their

eating disorder, and theres nothing I can do
until they are.
Some eating disorder sufferers have difficulty recog
nizing that they are ill or appreciating the severity of
their situation. Still others may desperately want to
stop their behaviors but are afraid. While expressing
a readiness and willingness to recover is a positive
sign, treatment doesnt need to wait for your loved
one to be ready. If your loved one is under the age
of 18, and even if they arent, it is crucial to begin
treatment as soon as you are aware of the problem.
Early intervention is consistently associated with higher
recovery rates. If the individual struggling is an adult,
family and friends should continue to express concerns
about the negative impact of the eating disorder on
their loved ones life and encourage him/her to seek
professional help.
As a parent, theres not much I can do to help

my child recover.
Research continues to consistently find the opposite is
true: parental involvement in a childs eating disorder
treatment can increase chances of recovery. Some
forms of treatment, like Family-Based Treatment (FBT)
(also known as the Maudsley Method), require that
parents temporarily take control of the childs eating
and monitor for purging until a healthy weight and
regular eating patterns are established. Other loved
ones can continue to provide support to the eating
disorder sufferer by helping to reduce anxiety over
eating and reminding them they are more than their
illness. Even if you decide FBT isnt right for your family,
there are still plenty of ways for you to be involved in
your childs or loved ones treatment.
My family member wont recover until they

uncover the reason they developed their
eating disorder.
While some people can point to a reason or event
that they believe caused their eating disorder, plenty
of people with eating disorders dont have a specific
reason. Nor is there any evidence that uncovering the
cause of an eating disorder is correlated with recovery.
Regardless of why someone may have developed
an eating disorder, generally the first priorities of
treatment are to restore normal eating and weight.
If my loved one insists they are fine, I should

believe them.
Problems with accurate self-awareness are one of the
hallmarks of EDs, so your loved one may not have the
self-awareness required to recognize a problem. Thus,
the individual struggling may genuinely believe they are
fine when they are acutely ill. Other people may deny
the presence of an eating disorder even when they
know they are ill because they are afraid of treatment.
Regardless of the reason, it is important to insist on
treatment by a trained mental health professional
and regular medical follow-up with a physician who is
well-versed in eating disorders. (See page 20 for more
information on medical tests.)
Page |7

Strict rules about eating or fad diets arent a
problem.
What appears to be a strict diet on the surface may
actually be the beginning of an eating disorder. Even
if the symptoms do not meet the criteria for a clinical
eating disorder diagnosis, disordered eating can have
serious medical consequences, such as anemia and
bone loss. Individuals dealing with serious disordered
eating may benefit from intervention and treatment to
address their concerns before it becomes a full-blown
eating disorder. Chronic dieting has been associated
with the later development of an eating disorder, so
addressing these issues right away may prevent a fullblown eating disorder.
As long as someone isnt emaciated, they are

not that sick.
Most people with an eating disorder are not under
weight. Although most people with eating disorders
are portrayed by the media as emaciated, you cant
tell whether someone has an eating disorder just by
looking at them. These perceptions can perpetuate
the problem and may cause distress in eating disorder
sufferers for fear of not being sick enough or good
enough at their disorder to deserve treatment.
Additionally, you cannot determine if an individual is
struggling with binge eating disorder (BED) based on
their weight. It is important to remember that just
because a sufferer is no longer emaciated, or has lost
weight in the process of treatment for BED, it doesnt
mean they are recovered; an individual can experience
a severe eating disorder at any weight.
The main eating disorder symptom I have to

worry about in my loved one is weight loss.
Although anorexia nervosa and other restrictive eating
disorders are characterized by weight loss, many
people with eating disorders dont lose weight and
may even gain weight as a result of their disorder.
Eating disorder behaviors only focus on food.

Individuals with eating disorders generally have an
unhealthy focus on food and weight, but the symptoms
of an eating disorder can extend far beyond food.
Numerous scientific studies have shown links between
eating disorders, perfectionism, and obsessionality,
which can lead to a fixation on grades, sports
performance, etc. Although many sufferers report that
eating disorder behaviors initially help them decrease
depression and anxiety, as the disorder progresses, the

malnutrition caused by eating disorder behaviors can
ultimately increase the levels of depression and anxiety
that can affect all aspects of life.
My loved one doesnt claim to feel fat. Can

they still have an eating disorder?
Absolutely. Body image distortions are very common
in eating disorders, but they are far from universal.
Clinical reports indicate that young children are much
less likely to have body image disturbance, and plenty
of teens and adults also dont report this symptom.
Since eating disorders are linked to biology,

my loved one doesnt have much hope for
recovery.
Its important to remember that biology isnt destiny.
There is always hope for recovery. Although biological
factors play a large role in the onset of EDs, they are not
the only factors. The predisposition towards disordered
eating behaviors may reappear during times of stress,
but there are many good techniques individuals with
eating disorders can learn to help manage their emotions
and keep behaviors from returning.
I have a son. I dont have to worry about eating

disorders because theyre a girl thing.
Eating disorders can affect anyone, regardless of their
gender or sex. Although eating disorders are more
common in females, researchers and clinicians are
becoming aware of a growing number of males who
are seeking help for eating disorders. A 2007 study by
the Centers for Disease Control and Prevention found
that up to one-third of all eating disorder sufferers are
male. Its currently not clear whether eating disorders
are actually increasing in males or if more males
who are suffering are seeking treatment or being
diagnosed. Because physicians dont often think that
eating disorders affect males, their disorders have
generally become more severe and entrenched at the
point of diagnosis. There may be subtle differences
in eating disorder thoughts and behaviors in males,
who are more likely to be focused on building muscle
than on weight loss. They are also more likely to purge
via exercise and misuse steroids than females are.
Although gay, bisexual, and transgender males are
more likely to develop an eating disorder than straight
males, the vast majority of male eating disorder
sufferers are heterosexual.
Page |8

My child is too young to develop an eating
disorder.
My son has bulimia, so he wont develop

another type of eating disorder.
Eating disorders can develop or re-emerge at any age.

Eating disorder specialists are reporting an increase
in the diagnosis of children, some as young as five or
six. Many eating disorder sufferers report that their
thoughts and behaviors started much earlier than
anyone realized, sometimes even in early childhood.
Picky eating is common in young children, but doesnt
necessarily indicate an eating disorder. Although most
people report the onset of their eating disorder in their
teens and young adulthood, there is some evidence
that people are being diagnosed at younger ages. Its
not clear whether individuals are actually developing
eating disorders at younger ages or if an increased
awareness of eating disorders in young children has led
to improved recognition and diagnosis.
Many with eating disorders will suffer from more than

one disorder before they ultimately recover. Roughly
half of all people with anorexia will go on to develop
bulimia. Some individuals show signs of both anorexia
and bulimia simultaneously, regularly binge eating
and they may also purge while at a low weight (this
is clinically classified as anorexia, binge/purge type).
Still others transition from one diagnosis to another, a
process known as diagnostic cross-over. All may involve
life-threatening consequences.
Now that my loved one is no longer a teenager,

I dont have to worry about an eating disorder.
Theyll grow out of it.
People can struggle with an eating disorder regardless
of their age. Research literature has identified a
subset of people with eating disorders who seem to
recover spontaneously, without treatment. However,
many people who struggle with eating disorders and
disordered eating in their teens continue to struggle
into adulthood unless they receive treatment. Men and
women at midlife and beyond are being treated for
eating disorders, either due to a relapse, ongoing illness
from adolescence or young adulthood, or due to the
new onset of an eating disorder.
Im not worried about my friend because

everyone eats too much ice cream sometimes.
Everyone must have binge eating disorder.
Binge eating disorder only affects 3.5% of women,
2% of men and up to 1.6% of adolescents, and it is
not the same thing as occasionally eating more than
is comfortable. Those who are struggling with binge
eating disorder engage in recurring episodes at least
once per week over three months in which they eat
significantly more food in a short space of time than
most people would, and experience a sense of loss of
control over their eating behavior. The frequency and
severity of the disorder have a significantly negative
impact on the individuals life, with many sufferers
experiencing co-occurring conditions such as major
depression and anxiety.
Purging only involves self-induced vomiting.

Purging includes any method of removing food from
the body before it is fully digested. Many times, an
individual is driven to purge to compensate for what
was perceived as excessive food intake. While selfinduced vomiting is one of the most common ways that
an individual will purge, its far from the only method.
Individuals can also use laxatives and enemas, as well
as use non-purging compensatory behaviors, such
as abusing insulin, fasting, and excessive exercising.
Individuals can also purge by using more than one
method. Each method carries its own particular risks,
but all involve potentially life-threatening electrolyte
imbalances.
Once my daughter with anorexia gains weight,

she will be fine.
Weight and nutritional restoration are only the first
steps to anorexia recovery. Once an anorexia sufferer
has returned to a weight that is healthy for them, they
can usually participate more fully and meaningfully
in psychotherapy. Other psychological work usually
needs to be done so the person can manage difficult
emotions without resorting to anorexic behaviors.
Weight recovery alone does not mean the eating
disorder is cured.
Page |9
Risk Factors for Eating Disorders

Eating disorders are complex conditions that can arise from a combination of long-standing behavioral, biological,
emotional, psychological, interpersonal, and social factors. Once started, however, they can create a selfperpetuating cycle of physical and emotional destruction.
Although scientists are still investigating the factors that can contribute to the development of an eating disorder,
they have identified some risk factors for the development of an eating disorder.
Psychological Risk Factors

Perfectionism
Anxiety
Depression
Difficulties regulating emotion
Obsessive-compulsive behaviors
Rigid thinking style (only one right way to do
things, etc.)
Sociocultural Risk Factors
Biological Risk Factors

Having a close family member with an eating

disorder
Family history of depression, anxiety, and/or
addiction
Personal history of depression, anxiety, and/or
addiction
Presence of food allergies that contribute to
picky or restrictive eating (e.g. celiac disease)
Presence of Type 1 Diabetes
Cultural promotion of the thin ideal

Size and weight prejudice
Emphasis on dieting
Ideal bodies include only a narrow range of
shapes and sizes
Page |10
Emotional and Behavioral Signs of an Eating Disorder

Those struggling with an eating disorder may have some, but not all, of the following emotional and behavioral
signs. Presence of any of the signs that your loved one may be struggling is cause for serious concern and you
should encourage them to seek professional help.
Intense fear of gaining weight
Negative or distorted self-image
Frequent checking in the mirror for perceived
flaws
Self-worth and self-esteem dependent on body
shape and weight
Fear of eating in public or with others
Preoccupation with food
Eating tiny portions or refusing to eat
Avoiding eating with others
Hoarding and hiding food
Eating in secret
Disappearing after eatingoften to the
bathroom
Unusual food rituals (cutting food into small
pieces, chewing each bite an unusually large
number of times, eating very slowly)
Any new practice with food or fad diets,
including cutting out entire food groups (no
sugar, no carbs, no dairy, vegetarianism/
veganism)
Little concern over extreme weight loss
Obessive interest in cooking shows on

television and collecting recipes
Consumption of only safe or healthy foods
Social withdrawal
Making excuses for not eating
Cooking elaborate meals for others, but
refusing to eat them themselves
Eating strange combinations of foods
Elaborate food rituals
Withdrawing from normal social activities
Hiding weight loss by wearing bulky clothes
Flat mood or lack of emotion
Irritability
Mood swings
Hyperactivity and restlessness (unable to sit
down, etc.)
Rigidity in behaviors and routines, and
experience of extreme anxiety if these are
interrupted
Excessive exercising
Exercising even when ill or injured, or for the
sole purpose of burning calories
Individuals with eating disorders may be at risk for co-occurring conditions such as mood and anxiety disorders,
substance abuse (alcohol, marijuana, cocaine, heroin, methamphetamines, etc.), self-harm (cutting, etc.) and
suicidal thoughts and behaviors.
Page |11
Physical Signs and Symptoms of an Eating Disorder

Those struggling with an eating disorder may have some, but not all, of the following physical signs and symptoms.
Presence of any of the signs that your loved one may be struggling is cause for serious concern and you should
encourage them to seek professional help.
Noticeable fluctuations in weight, both up and
down
Stomach cramps, other non-specific
gastrointestinal complaints (constipation, acid
reflux, etc.)
Menstrual irregularitiesmissing periods
or only having a period while on hormonal
contraceptives (this is not considered a true
period)
Difficulties concentrating
Abnormal laboratory findings (anemia, low
thyroid and hormone levels, low potassium,
low blood cell counts, slow heart rate)
Dizziness
Fainting/syncope
Feeling cold all the time
Sleep problems
Cuts and calluses across the top of finger joints
(a result of inducing vomiting)
Dental problems, such as enamel erosion,

cavities, and tooth sensitivity
Dry skin
Dry and brittle nails
Swelling around area of salivary glands
Fine hair on body
Thinning of hair on head, dry and brittle hair
(lanugo)
Cavities, or discoloration of teeth, from
vomiting
Muscle weakness
Yellow skin (in context of eating large amounts
of carrots)
Cold, mottled hands and feet or swelling of feet
Poor wound healing
Impaired immune functioning
Signs of Anorexia Nervosa

Dramatic weight loss
Dresses in layers to hide weight loss or stay
warm
Is preoccupied with weight, food, calories, fat
grams, and dieting
Refuses to eat certain foods, progressing to
restrictions against whole categories of food
(e.g., no carbohydrates, etc.)
Makes frequent comments about feeling fat
or overweight despite weight loss
Complains of constipation, abdominal pain,
cold intolerance, lethargy, and excess energy
Denies feeling hungry
Develops food rituals (e.g., eating foods in
certain orders, excessive chewing, rearranging
food on a plate)
Cooks meals for others without eating
Consistently makes excuses to avoid mealtimes
or situations involving food
Maintains an excessive, rigid exercise regimen
despite weather, fatigue, illness, or injury, the
need to burn off calories taken in
Withdraws from usual friends and activities

and becomes more isolated, withdrawn, and
secretive
Seems concerned about eating in public
Has limited social spontaneity
Resists maintaining a body weight
appropriate for their age, height, and build
Has intense fear of weight gain or being
fat, even though underweight
Has disturbed experience of body weight
or shape, undue influence of weight or
shape on self-evaluation, or denial of the
seriousness of low body weight
Postpuberty female loses menstrual period
Feels ineffective
Has strong need for control
Shows inflexible thinking
Has overly restrained initiative and
emotional expression
Page |12

Signs of Bulimia Nervosa
In general, behaviors and attitudes indicate
that weight loss, dieting, and control of food
are becoming primary concerns
Evidence of binge eating, including
disappearance of large amounts of food in
short periods of time or lots of empty wrappers
and containers indicating consumption of large
amounts of food
Evidence of purging behaviors, including
frequent trips to the bathroom after meals,
signs and/or smells of vomiting, presence of
wrappers or packages of laxatives or diuretics
Appears uncomfortable eating around others
Develops food rituals (e.g. eats only a particular
food or food group [e.g. condiments], excessive
chewing, doesnt allow foods to touch)
Skips meals or takes small portions of food at
regular meals
Steals or hoards food in strange places
Drinks excessive amounts of water
Uses excessive amounts of mouthwash, mints,
and gum
Hides body with baggy clothes
Maintains excessive, rigid exercise regimen
despite weather, fatigue, illness, or injury, the
need to burn off calories
Shows unusual swelling of the cheeks or

jaw area
Has calluses on the back of the hands and
knuckles from self- induced vomiting
Teeth are discolored, stained
Creates lifestyle schedules or rituals to make
time for binge-and-purge sessions
Withdraws from usual friends and activities
Looks bloated from fluid retention
Frequently diets
Shows extreme concern with body weight
and shape
Has secret recurring episodes of binge
eating (eating in a discrete period of time
an amount of food that is much larger than
most individuals would eat under similar
circumstances); feels lack of control over ability
to stop eating
Purges after a binge (e.g. self-induced vomiting,
abuse of laxatives, diet pills and/or diuretics,
excessive exercise, fasting)
Body weight is typically within the normal
weight range; may be overweight
Signs of Binge Eating Disorder

Evidence of binge eating, including disappear
ance of large amounts of food in short periods
of time or lots of empty wrappers and containers
indicating consumption of large amounts of food
Develops food rituals (e.g., eats only a parti
cular food or food group [e.g., condiments],
excessive chewing, doesnt allow foods to
touch)
Steals or hoards food in strange places
Hides body with baggy clothes
Creates lifestyle schedules or rituals to make

time for binge sessions
Skips meals or takes small portions of food at
regular meals
Has periods of uncontrolled, impulsive, or
continuous eating beyond the point of feeling
comfortably full
Does not purge
Engages in sporadic fasting or repetitive dieting
Body weight varies from normal to mild,
moderate, or severe obesity
Page |13
Eating Disorder Statistics

How many people will struggle with an eating disorder during their lifetime?
It sounds like an obvious, easy-to-answer question, but its more complicated than you might think. Since the
vast majority of people with eating disorders either never seek formal treatment for their disorder or are never
formally diagnosed (Hart et al., 2011), researchers cant just search medical records. Still, scientists in the US
and around the world are trying to gather data to give sufferers, loved ones, and the general community more
information about how many people have eating disorders.
Researchers calculate the frequency of eating disorders using two main measurements:
Incidence the number of people who first develop an eating disorder during a specific period of time
(usually one year)
Prevalence the total number of people who have an eating disorder during a specific period of time
Population-Wide Statistics
NEDA has gathered data on the prevalence of eating
disorders from the US, UK, and Europe to get a
better idea of exactly how common eating disorders
are. Older data from other countries that use more
strict definitions of anorexia and bulimia give lower
prevalence estimates:
In a study of 31,406 Swedish twins born from
1935-1958, 1.2% of the women had strictly
defined anorexia nervosa during their lifetime,
which increased to 2.4% when a looser
definition of anorexia was used (Bulik et al.,
2006).
For twins born between 1975 and 1979 in
Finland, 2.2-4.2% of women (Keski-Rahkonen
et al., 2007) and 0.24% of men (Raevuori et al.,
2009) had experienced anorexia during their
lifetime.
At any given point in time between 0.3-0.4%
of young women and 0.1% of young men will
suffer from anorexia nervosa, 1.0% of young
women and 0.1% of young men will suffer from
bulimia, with similar rates for binge eating
disorder (Hoek & van Hoeken, 2003).
Several more recent studies in the US have used
broader definitions of eating disorders that more
accurately reflect the range of disorders that occur,
resulting in a higher prevalence of eating disorders.
A 2007 study asked 9,282 English-speaking
Americans about a variety of mental health
conditions, including eating disorders. The
results, published in Biological Psychiatry,
found that:
0.9% of women and 0.3% of men had

anorexia during their life
bulimia during their life
binge eating disorder during their life
(Hudson et al., 2007).
When researchers followed a group of 496
adolescent girls for 8 years (Stice et al., 2010),
until they were 20, they found:
5.2% of the girls met criteria for DSM5 anorexia, bulimia, or binge eating
disorder.
When the researchers included nonspecific eating disorder symptoms, a total
of 13.2% of the girls had suffered from a
DSM-5 eating disorder by age 20.
Combining information from several sources, Eric
Stice and Cara Bohon (2012) found that
Between 0.9% and 2.0% of females
and 0.1% to 0.3% of males will develop
anorexia
Subthreshold anorexia occurs in 1.1% to
3.0% of adolescent females
Between 1.1% and 4.6% of females
and 0.1% to 0.5% of males will develop
bulimia
Subthreshold bulimia occurs in 2.0% to
5.4% of adolescent females
Between 0.2% and 3.5% of females and
0.9% and 2.0% of males will develop
binge eating disorder
Subthreshold binge eating disorder
occurs in 1.6% of adolescent females
Page |14

Based on the Hudson et al., 2007 study of 9,282
people, approximately 20 million females and 10
million males in the US have a clinically significant
eating disorder at some point in their lifetime.
Eating Disorder Diagnosis Over Time

Have these numbers changed over time? The answer
isnt clear. It does appear that, at least for the last two
decades, the rates of new diagnoses of anorexia and
bulimia have remained relatively stable.
An ongoing study in Minnesota has found
incidence of anorexia increasing over the
last 50 years only in females aged 15 to 24.
Incidence remained stable in other age groups
and in males (Lucas et al., 1999).
A Dutch study published in the International
Journal of Eating Disorders found that new
diagnoses of anorexia and bulimia remained
relatively steady in the Netherlands from
1985-1989 to 1995-1999 (van Son et al., 2006).
An analysis of many studies from Europe and
North America revealed that rates of anorexia
increased sharply until the 1970s, when they
stabilized.
Rates of bulimia increased during the 1980s
and early 1990s, and they have since remained
the same or decreased slightly (Smink, van
Hoeken, & van Hoek, 2012).
A British study also found stability in new
anorexia and bulimia diagnoses in both
males and females, although rates of EDNOS
diagnoses increased in both groups
(Micali et al., 2013). (Please note that in the
new DSM-5, EDNOS is no longer recognized and
a new term of OSFED has been added, meaning
Other Specified Feeding or Eating Disorder).
Eating disorder symptoms are beginning earlier
in both males and females, which agrees with
both formal research (Favaro et al., 2009) and
clinical reports.
References:
Bulik CM, Sullivan PF, Tozzi F, Furberg H, Lichtenstein P, and
Pedersen NL. (2006). Prevalence, heritability, and prospective
risk factors for anorexia nervosa. Archives of General
Psychiatry, 63(3):305-12. doi:10.1001/archpsyc.63.3.305.
References (continued):
Favaro A, Caregaro L, Tenconi E, Bosello R, and Santonastaso
P. (2009). Time trends in age at onset of anorexia nervosa and
bulimia nervosa. Journal of Clinical Psychiatry, 70(12):1715-21.
doi: 10.4088/JCP.09m05176blu.
Hart LM, Granillo MT, Jorm AF, and Paxton SJ. (2011). Unmet
need for treatment in the eating disorders: a systematic
review of eating disorder specific treatment seeking among
community cases. Clinical Psychology Reviews, 31(5):727-35.
doi: 10.1016/j.cpr.2011.03.004.
Hoek HW and van Hoeken D. (2003). Review of the prevalence
and incidence of eating disorders. International Journal of
Eating Disorders, 34(4):383-96. doi: 10.1002/eat.10222.
Hudson JI, Hiripi E, Pope HG Jr, and Kessler RC. (2007). The
prevalence and correlates of eating disorders in the National
Comorbidity Survey Replication. Biological Psychiatry,
61(3):348-58. doi:10.1016/j.biopsych.2006.03.040.
Keski-Rahkonen A, Hoek HW, Susser ES, Linna MS, Sihvola
E, Raevuori A, , and Rissanen A. (2007). Epidemiology and
course of anorexia nervosa in the community. American
Journal of Psychiatry, 164(8):1259-65. doi: 10.1176/appi.
ajp.2007.06081388.
Lucas AR, Crowson CS, OFallon WM, Melton LJ 3rd. (1999).
The ups and downs of anorexia nervosa. International Journal
of Eating Disorders, 26(4):397-405. DOI: 10.1002/(SICI)1098108X(199912)26:4<397::AID-EAT5>3.0.CO;2-0.
Micali N, Hagberg KW, Petersen I, and Treasure JL. (2013). The
incidence of eating disorders in the UK in 20002009: findings
from the General Practice Research Database. BMJ Open, 3(5):
e002646. doi: 10.1136/bmjopen-2013-002646.
Raevuori A, Hoek HW, Susser E, Kaprio J, Rissanen A, and
Keski-Rahkonen A. (2009). Epidemiology of anorexia nervosa
in men: a nationwide study of Finnish twins. PLoS ONE, doi:
10.1371/journal.pone.0004402.
Smink FR, van Hoeken D, and Hoek HW. (2012). Epidemiology
of eating disorders: incidence, prevalence and mortality
rates. Current Psychiatry Reports, 14(4):406-14. doi: 10.1007/
s11920-012-0282-y.
Stice E & Bohon C. (2012). Eating Disorders. In Child and
Adolescent Psychopathology, 2nd Edition, Theodore
Beauchaine & Stephen Linshaw, eds. New York: Wiley.
Stice E, Marti CN, Shaw H, and Jaconis M. (2010). An 8-year
longitudinal study of the natural history of threshold,
subthreshold, and partial eating disorders from a community
sample of adolescents. Journal of Abnormal Psychology,
118(3):587-97. doi: 10.1037/a0016481.
van Son GE, van Hoeken D, Bartelds AI, van Furth EF, and Hoek
HW. (2012). Time trends in the incidence of eating disorders:
a primary care study in the Netherlands. International Journal
of Eating Disorders, 39(7):565-9. doi: 10.1002/eat.20316.
Page |15
Supporting a
Loved One
Page |16
Encouraging a Loved One to Seek Help

Recovery from an eating disorder requires professional
help, and chances of recovery are improved the sooner
a person begins treatment. It can be frustrating to
watch a loved one suffer and refuse to seek help.
Parents of children under 18 can often require that
their childs eating disorder be treated, even if the child
doesnt buy in to the idea that treatment is necessary.
If the first professional isnt a good match,

encourage them to keep looking. Finding the
right therapist isnt easy, and someone may have
to interview several potential candidates before
finding one that works. Sometimes it takes
several tries before a person identifies the right
clinician.
For parents of older sufferers, and other loved ones

of sufferers of any age, encouraging a reluctant eating
disorder patient to seek help can be a delicate task.
Its crucial to their future well-being, however, to seek
recovery, and encouraging proper treatment of their
eating disorder can help them move towards that goal.
Make sure they get a medical check-up. Eating

disorders cause a wide range of medical issues,
and sufferers need to see a physician regularly
to make sure their health isnt at immediate risk.
Remember that lab work may remain stable
even if someone is close to death, so dont rely
on blood tests alone.
Although every discussion with an eating disorder

sufferer will be slightly different, here are a few basic
points to keep in mind:
Taking the first step towards recovery is scary
and challenging. Although the act of seeking
help might seem straightforward to you, it can
be very stressful and confusing. Keeping that
in mind will help you empathize with what the
other person is going through.
Ask if they want help making the first call or
appointment. Some individuals may find it less
anxiety-provoking if someone else sets up the
appointment or goes with them to discuss a
potential eating disorder.
Dont buy the eating disorders excuses. Its
easy enough to promise to see a doctor or
a therapist, but the sufferer needs to follow
through with making the appointment and
seeing a professional on a regular basis. Yes,
everyones busy, treatment can be expensive,
and the eating disorder might not seem like
a big deal. Dont making eating disorder
treatment the only thing you talk about with
your loved one, but follow up on their promise
to see someone.
Ally with the part of them that wants to

get well. Often, eating disorder sufferers are
hesitant to change their behaviors. Some people
have found it easier to focus on some of the side
effects of the eating disorder that the sufferer
may be more willing to acknowledge and tackle,
such as depression, social isolation, anxiety,
insomnia, fatigue, or feeling cold. This can help
get them in the door, where the eating disorder
can begin to be addressed.
Remind the person of why they want to get
well. What types of goals does your loved one
have? Do they want to travel? Have children?
Go to college? Start a new career? Helping them
reconnect with their values and who they want
to be can help them stay focused on long-term
recovery and not the short-term benefits of the
eating disorder.
Find a middle ground between forcing the
issue and ignoring it. If you become overly
insistent and combative about your loved one
seeking help, they may start to avoid you. On
the other hand, you dont want to ignore a
potentially deadly illness. Its not easy to find a
middle ground between these two extremes,
but regularly checking in with your loved one
about how theyre doing and if they are willing
to seek treatment can help nudge them in the
right direction.
Page |17
Encouraging Your Child to Seek Treatment

The following guidance presumes that the situation
is not immediately life-threatening. If you are unsure,
seek immediate emergency medical care or dial 911.
Eating disorders can be fraught with secrecy and
shame for sufferer and family alike. Many with eating
disorders will deny they have a problem. Sometimes
they are embarrassed and ashamed of their behaviors.
Other people are afraid that if they admit they have a
problem, they will have to stop their eating disorder
behaviors, which can be extremely frightening and
anxiety-provoking. Still other sufferers truly do not
believe they have a problem and can be extremely
reluctant to seek treatment.
Despite this, many sufferers later say that they
were ultimately glad when someone stepped in and
encouraged them to seek treatment. Often sufferers
desperately want to get well, even as they are
ambivalent about giving up eating disorder behaviors.
As a parent, it can be tempting to believe your child
when they insist that they are fine. But when it comes
to an eating disorder, your child may not always be
the best judge of their physical and mental state. By
insisting on a thorough evaluation by an eating disorder
expert, the worst thing that can happen is you find out
you made a big deal out of nothing.
Clear both of your schedules and set up a quiet

place to talk.
The goal of this discussion should be to express
your concerns to your loved one and to explain any
steps you might be taking (e.g. setting up a doctors
appointment or requesting they get evaluated for a
possible eating disorder). Dont worry about convincing
them they have a problem. What you need to do as
a parent wont necessarily depend on their ability to
believe there is something wrong.
Be calm, caring, and non-judgmental. Express your
observations with minimal emotion and use specifics.
Try using a formula like I am concerned when I see
you running to the bathroom after dinner. Share your
concerns about other changes you may have noticed,
such as an increase in depression, anxiety, or isolation.
Be prepared for denial and anger.

Many eating disorder sufferers feel threatened or
exposed when someone confronts them about their
behavior. Not infrequently, they react with denial and
anger. Dont take this personally. It isnt because you
didnt do a good job talking to them, but because they
are likely very afraid and uncertain. Try to stay off of
their emotional wave as best you can. Your ability to
stay calm and tolerate their distress is one of the most
powerful tools you can muster against their eating
disorder.
Dont expect insight or buy-in.

Your child may be one of those with an eating disorder
who can recognize that something is wrong and
expresses a willingness to participate in treatment. If
so, great! If not, dont worry. Its normal for a young
person with an eating disorder to have limited insight
into the seriousness of their illness. It doesnt mean
they wont get better. Sometimes insight doesnt
happen until long into recovery.
Stay focused on what you need to do.

One of the biggest gifts you can give your child is to stay
focused on their long-term needs and their health. Even
if they dont think its necessary, insist on a medical
check-up and evaluation by an eating disorder expert.
Go to the appointment with your child if you can. If not,
make sure the physician knows ahead of time about
your concerns and potential tests to run. Also require
that your child sign all waivers and forms so that you
can speak directly to their medical providers. The age
at which this happens varies by state: in some places,
the age is 18, but it can be as young as 13.
Seek a second opinion.

Not all eating disorder treatment providers are created
equal. There are no rules as to who can call themselves
an expert at treating eating disorders. Talk to several
therapists and physicians until you find one you can feel
confident will treat your child well. Get several ideas
about treatment options and determine which one will
work best for your child and family.
Page |18

Remind your child that life will be there after
recovery.
Taking time off of school or college can seem like a
deal-breaker to many young people. What can be hard
to realize in the moment is that school and life will still
be waiting after they are more stable in their recovery.
Plenty of people can seek treatment for their eating
disorder with minimal disruption in their life, but others
need more intensive support. When making your
decisions about treatment, remember that recovery
comes first. Everything else can wait.
If your child is over 18, you may be more limited in

what you can legally require your child to do. However,
dont despair. You have love on your side, and that
really helps. Here are some other things that also
might help:
Use whatever leverage you have.

Even some of the most successful young adults arent
completely financially independent, especially while
at college or if they have recently graduated. Require
them to seek an eating disorder evaluation and seek
appropriate treatment (including signing any waivers).
Make these actions contingent on your providing any
financial or practical assistance, such as paying for
college, car, cell phones, etc. It sounds cruel on the
surface, but you are really prioritizing their health and
their life above anything else.
Seek to be involved with their treatment.

Yes, theyre over 18 and theyre legally adults. But an
eating disorder often causes a regression in maturity,
so although they might be 25 in years, they may only
be able to function at the level of a 14-year-old. Add
to that the fact that the eating disorder is a master
manipulator and feels threatened when others are
involved in treatment. Regardless of how your child
feels about you being involved in their treatment, you
can provide valuable insights to clinicians that your
child might miss.
Keep lines of communication open.

If your child initially rejects your pleas that they seek
help, dont give up. If they are financially independent,
you may have less leverage to encourage them to
seek care, but you can still play an important role
in their life. It may take time for the message that
you love them and you want them to live a full and
complete life without an eating disorder in the way to
sink in. Hopefully, with time and love and lots of open
communication, they will receive your message.
Set your own boundaries.

Know what behaviors you will and wont tolerate in
your home. Every family will draw the lines somewhat
differently. Try framing it like drug abuse. You probably
wouldnt allow your child to do heroin in their
bedroom if you could stop it. Make it clear to your
loved one what behaviors are out of bounds and what
the consequences are, and then calmly, clearly, and
consistently follow through. This will help reinforce in
their minds what is and isnt okay, and will hopefully
help to encourage them to seek treatment.
Page |19
First Steps to Getting Help

These steps are intended for use in a nonemergency
situation. If the situation is a medical or psychiatric
emergency and the person is at risk of suicide or is
medically unstable, call 911 immediately.
Early detection, initial evaluation, and effective
treatment are important steps that can help an eating
disorder sufferer move into recovery more quickly,
preventing the disorder from progressing to a more
severe or chronic state. The following assessments are
recommended as the first steps to diagnosis and will
help determine the level of care needed for your family
member. Receiving appropriate treatment is the first
step towards recovery.
Patient Assessment
Patient history, including screening questions
about eating patterns
Determination of medical, nutritional,
psychological and social functioning (if
possible, an eating disorder expert should
assess the mental health of your child)
Attitudes towards eating, exercise, and
appearance
Family history of eating disorder or other
psychiatric disorder, including alcohol and
substance use disorders
Family history of obesity
Assessment of other mental health
conditions, such as depression and anxiety
Laboratory Testing
Complete Blood Count (CBC) with differential
urinalysis
Complete Metabolic Profile: sodium, chloride,
potassium, glucose, blood urea nitrogen
Creatinine, total protein, albumin, globulin,
calcium, carbon dioxide, aspartate transami
nase (AST), alkaline phosphatase (ALP), total
bilirubin
Serum magnesium, phosphate
Thyroid screen (T3, T4, TSH)
Electrocardiogram (ECG)
Special Circumstances
If uncertain of diagnosis
Erythrocyte sedimentation rate
Radiographic studies (computed tomography
or magnetic resonance imaging of the brain or
upper/lower gastrointestinal system)
If patient has been without her menstrual period for six
or more months
Urine pregnancy, luteinizing and folliclestimulating hormone, and prolactin tests
Forindividuals with persistent low weight, especially
females who sustain amenorrhea, a work-up should
include a Dual Energy X-ray Absorptiometry (DEXA) to
assess bone mineral density.
Medical Exam
Physical examination including height,
weight, body mass index (BMI), growth chart
assessment for children and adolescents,
cardiovascular and peripheral vascular
function, skin health, hair loss, evidence of
self-injurious behaviors
Measurement of body temperature and pulse
Orthostatic blood pressure
Laboratory tests (see below)
Dental exam if self-induced vomiting is known
or suspected
Establishment of diagnosis and recommenda
tions for appropriate level of care
Page |20
How to Support a Loved One with an Eating Disorder

Educate yourself on eating disorders; learn the
jargon
Distract your loved one during and after meals to

help with anxiety
Learn the differences between facts and myths

about weight, nutrition, and exercise
Refrain from telling the person what they should

do
Ask what you can do to help
Continue to reach outindividuals with eating

disorders may find it hard to socialize and may
push people away
Listen openly and reflectively

Be patient and nonjudgmental
Offer to help with practical tasks (laundry,
transportation to and from appointments)
Avoid discussions about food, weight, and eating,
especially your own habits or those of others
Model a balanced relationship with food, weight,
and exercise
Ask how they are feeling
Remember that recovery is a marathon, not a
sprint
Focus on the emotional aspects of an eating
disorder, not just the physical ones
Encourage the sufferer to follow through with
treatment recommendations
Arrange activities that dont involve food or

eating so your loved one can continue to take
part
When it doubt, ask. They cant read your mind,
and you cant read theirs
Validate their feelings and their emotional pain,
especially when they share something difficult or
reveal that they have kept a secret
Focus on positive personality traits and
other qualities that have nothing to do with
appearance
Express any concerns that arise
Dont take their actions personally
Set boundaries to preserve your own emotional
well-being
Page |21
How to Talk to a Loved One about an Eating Disorder

Friends and family are often key to encouraging someone with an eating disorder to seek help. Whether the
eating disorder sufferer is unaware that there is a problem, they are afraid or ashamed to seek help, or they are
ambivalent about giving up eating disorder behaviors, many sufferers find it difficult to seek help for their eating
disorder. Family and friends can play an important role in identifying worrying symptoms to the sufferer and
encouraging them to seek help.
Raising concerns about the presence of an eating disorder

Its not always easy to discuss eating disorders, especially with someone you are close to. However, many
individuals now in recovery from an eating disorder say the support of family and friends was crucial to them
getting well.
Set a private time and place to talk. No one
wants to have personal issues dissected in front
of a crowd, so make sure you find a time and
place where you will have time to discuss your
concerns without being rushed or in front of a
crowd.
Use I statements. Focus on behaviors that
you have personally observed, such as I have
noticed that you arent eating dinner with
us anymore, or I am worried about how
frequently you are going to the gym. Its easy
to sound accusatory (Youre not eating! Youre
exercising too much!), which can cause a person
to feel defensive. Instead, stick to pointing out
what youve observed. If you can, also point
out behaviors not related to eating and weight,
which may be easier for the person to see and
accept.
Rehearse what you want to say. This may help
reduce your anxiety and clarify exactly what you
want to say. Other people have found writing out
their main points helpful.
Stick to the facts. Raising concerns about a
potential eating disorder can bring up lots of
emotions, and its important not to let those
run the show. Instead, talk about behaviors and
changes you have observed and calmly point out
why you are concerned (I have seen you run to
the bathroom after meals and that makes me
worried you might be making yourself throw up.).
Remove potential stigma. Remind your loved

one that theres no shame in admitting you
struggle with an eating disorder or other mental
health problem. Lots of people will be diagnosed
with these issues during their lifetimes, and many
will recover.
Avoid overly simplistic solutions. Being told
Just stop or Just eat isnt helpful. It can leave
the sufferer feeling frustrated, defensive, and
misunderstood.
Encourage them to seek professional help.
Many eating disorder sufferers require profes
sional help in order to get better. Offer to help
the sufferer find a physician or therapist if they
dont have one, or attend an appointment where
the eating disorder is discussed. Getting timely,
effective treatment dramatically increases a
persons chances for recovery.
Be prepared for negative reactions. Some
eating disorder sufferers are glad that someone
has noticed they are struggling. Others respond
differently. Some may become angry and hostile,
insisting that you are the one with the problem.
Others may brush off your concerns or minimize
potential dangers. Both of these responses are
normal. Reiterate your concerns, let them know
you care, and leave the conversation open.
Even if you dont feel the discussion was well-received or that you got through to your loved one, dont despair.
You shared your concern and let them know that you care and you are there for them. You may also have planted
a seed that they should seek help. The seed may not take root immediately, but over time, the concern of friends
and family can help move an individual towards recovery.
Note: If you suspect a medical or psychiatric emergency, such as threats of suicide or medical complications
from eating disorder behaviors (such as fainting, heart arrhythmias, or seizures), seek medical attention or call
911 immediately.
Page |22
Talking to Young Children About Eating Disorders

Whether in a sibling, friend, or parent, eating disorders can be frightening and stressful for loved ones to
understand. When the loved one is a young child, the issue can become even more complicated. The goal of
this section is to provide some basic information on eating disorders to help explain to young children what is
happening to their friend or family member.
What to tell a young child?

This will depend on their age and where they are in
their emotional, social, and cognitive development.
There are no formal guidelines on what is best to tell
a child and when, so use your best judgment and
knowledge of the child.
It might be tempting to avoid saying something
altogether with a very young child, since it can seem
that they are unaware of the issue. However, children
are often more observant than adults realize and
frequently see what is going on, even if they cannot
verbalize it. Acknowledging that something is going
on with their loved ones behavior can validate their
emotions and help them feel more safe and secure.
Some brief statements that might help very young
children understand an eating disorder in a friend or
family member:
Mom/Dad/Sibling has trouble eating properly.
We are all working together to help him/her
learn to eat better to get healthy. We all need
food to help our bodies function properly.
Mom/Dad/Sibling gets very frightened and
upset at mealtimes. THIS IS NOT YOUR FAULT.
We hope that this will get easier for them with
treatment.
Having an eating problem can be very scary.
It can also be scary when a parent/sibling has
an eating problem. Do you have any questions
about eating problems? Is there anything you
would like to talk about?
Your parents/siblings eating problem is being
helped by grown-ups and doctors. Your job is
to be yourself.
Your parent/sibling is not choosing to act this
way. This isnt their fault. Its not your fault.
Were all doing the best we can to help them
get better.
What to tell an older child?

Older children may have heard of eating disorders
and be better able to understand the complexities of
what is happening to their loved one. Psychologists
recommend keeping the discussions brief and matterof-fact, while also giving the child a chance to express
his/her emotions and concerns about their family
member or friend.
Some Common Questions from Children

Children may have questions about eating disorders,
just like adults do. Here are some common questions
with some sample answers.
What is an eating disorder?
Eating disorders are illnesses that make somebody eat
too much or too little for a long period of time. Lots
of us might eat a little more one day and a little less
the next. Thats perfectly normal. People with eating
disorders do this day after day, and they cant stop
even though its making them sick. Thats why your
mom/dad/sibling is seeing a doctor: to help get better.
Are eating disorders serious?
They can be. But most people with eating disorders do
get better. Your mom/dad/sibling is working on getting
well and is seeing a doctor to make sure they stay
healthy.
Will I get an eating disorder?
I dont know. I hope not. The best thing you can do to
stay healthy is eat enough to keep growing and tell an
adult if you start to get worried about food or what you
weigh.
What causes an eating disorder?
No one knows for sure. What doctors do know is that
people dont choose to have eating disorders.
Will mom/dad/sibling have to go away to get better?
Many people with eating disorders can stay at home
while they are working on getting better. Some people
need extra help and may go to a special hospital to get
better.
Do other people have this problem?
Yesyou and your family member are not alone. Lots of
people also have eating problems and there are lots of
good doctors out there who are helping them get well.
Page |23
When Your Loved One is Over 18 and Refusing Treatment

Many of those with eating disorders are ambivalent about recovery. They may not believe there is a problem or
that the problem is serious. The thought of not engaging in eating disordered behaviors is often tremendously
anxiety-provoking, which can also lead someone to turn away from treatment. Regardless of why, it is important
to encourage your loved one to seek appropriate treatment, since an eating disorder can be fatal.
Identify your leverage
Many young adults still rely on their parents for
financial and other types of support. Some parents
have found that requiring their child to engage in
treatment as a condition for certain types of support
(car, cell phone, housing, paying for college) has been
enough to convince the sufferer to seek help. Other
parents and loved ones use different tactics, including
seeking professional help for their own well-being. You
will know which approach will work best for your loved
one and your situation.
The expectation that they will receive treatment and
recover from their disorder is powerful medicine for a
sufferer. Oftentimes, a person with an eating disorder
stops believing that recovery is possible. Having
supportive friends and family who believe that for
them can be a very strong message.
When leverage isnt enough
Sometimes, a loved one is financially independent.
Other times, leverage simply isnt effective. Although
the parents of minors can often seek treatment on
behalf of their child, it becomes exponentially more
difficult to require a loved one to seek care once they
have turned 18 and have the legal authority to refuse
treatment. Although your options are substantially
more limited if your loved one is over 18 and refusing
treatment, you have several legal options you can
pursue. These options are generally exercised as a last
resort, but can be effective and potentially life-saving.
Guardianship
Seeking medical guardianship gives you the legal
authority to make decisions about a persons physical
and psychological care. It doesnt allow you to sign an
adult into a treatment program, but it does allow you
to be closely involved in the decision-making process.
To be granted, a judge must decide that a person isnt
capable of making these decisions on his or her own.
To obtain guardianship, you will need to seek a court
order. As laws, definitions, and regulations vary by
state, contact a family law attorney in your state for
more guidance.
Conservatorship
Conservatorship gives you the authority to manage
another persons finances. It can be useful in eating
disorders to reduce access to funds that are fueling
the disorder and allowing a seriously ill individual to go
untreated. There may also be other circumstances in
which conservatorship is warranted. To be granted, a
judge must decide that a person isnt capable of making
these decisions on his or her own.
To obtain conservatorship, you will need to seek a
court order. As laws, definitions, and regulations vary
by state, contact a family law attorney in your state for
more guidance.
Note: both conservatorship and guardianship are
governed under state law, and only effective in the
particular state where it is granted. If your loved one
seeks care in a different state, the guardianship or
conservatorship doesnt automatically transfer, and
you may need to seek additional legal advice and
court orders in this situation.
Other legal actions

72-hour hold or an emergency hold can be
given if a person is deemed an immediate danger
to themselves or others. This gives a hospital the
order to hold and treat a person until a judge can
evaluate the patients status and what should
happen next. This must occur within 72 hours.
Longer-term holds are granted after an initial
hearing in which a person is found incompetent
to make their own medical decisions due to their
current mental or physical state. An individual
can be transferred to a county or state facility to
receive treatment for a certain period of time,
after which their case must be reviewed.
At these hearings, your loved one with an eating
disorder will be granted an attorney to represent their
cause and help look out for their best interests.
Page |24
The definition of incapacitated and non-competent will

vary from area to area and judge to judge. Although
these orders are granted for individuals with eating
disorders, they can be difficult to obtain, especially
since some eating disordered individuals genuinely do
not believe there is a problem. This can convince some
judges that the person is fine. For all of these types
of actions, the advice of lawyers and of the medical
community is paramount to a successful outcome.
Often, knowing that a loved one is able and willing

to require treatment is enough to get the eating
disordered person to back down and enter treatment
themselves. Studies have shown that many eating
disorder sufferers who felt coerced into treatment
ultimately acknowledged that the treatment was
necessary and life-saving.
Page |25
Treatment
Information
Page |26
Level of Care Guidelines for Patients

Medical necessity criteria continue to change over time and can differ between insurance companies. This
American Psychiatric Association chart will give you a good sense of the levels of care, but consumers should be
aware that weight, co-occurring conditions, and motivation for change are all considered when clinical programs
and insurance consider level of care.
These guidelines are intended for use by treatment professionals in determining appropriate level of care. Please
feel free to print and distribute to clinicians, insurance officials, and others involved in these decisions with your
loved one.
American Psychiatric Association Level of Care Guidelines for Patients with Eating Disorders
Level One:
Outpatient
Medical Status
Level Two:
Intensive
Outpatient
Level Three:
Level Four:
Partial
Residential
Hospitalization Treatment
(Full-day
Outpatient Care)
Medically stable to the extent that more

extensive medical monitoring, as defined in
levels 4 and 5, is not required
Medically stable
to the extent that
intravenous fluids,
nasogastric tube
feedings, or multiple
daily laboratory
tests are not
needed
Level Five: Inpatient

Treatment
For adults:
Heart rate <40 bpm;
blood pressure
<90/60 mmHg;
glucose <60 mg/dl;
potassium <3 mEq/L;
electrolyte imbalance;
temperature <97.0F;
dehydration; liver,
kidney, or cardiac
compromise requiring
acute treatment;
poorly controlled
diabetes
For children and
adolescents:
Heart rate near 40
bpm; orthostatic blood
pressure changes
(>20 bpm increase
in heart rate or >10
mmHg to 20 mmHg
drop); blood pressure
<80/50 mmHg; low
potassium, phosphate,
or magnesium levels
Page |27
Level One:
Outpatient
Level Two:
Intensive
Outpatient
Level Three:
Level Four:
Partial
Residential
(Full-day
Outpatient Care)

Treatment
Suicidality
If suicidality is present, inpatient monitoring and treatment may be

needed depending on the estimated level of risk
Specific plan with high

lethality or intent;
admission may also
be indicated in patient
with suicidal ideas or
after a suicide attempt
or aborted attempt,
depending on the
presence or absence
of other factors
modulating suicide risk
Weight as
percentage of
healthy body
weight
Generally
>85%
Generally
>80%
Generally >80%
Generally <85%
Generally <85%; acute

weight decline with
food refusal even if not
<85% of healthy body
weight
Motivation
to recover,
including cooperativeness,
insight, and
ability to control obsessive
thoughts
Fair-to-good
motivation
Fair
motivation
Partial
motivation;
cooperative;
patient
preoccupied
with intrusive,
repetitive
thoughts >3
hours/day
Poor-to-fair
motivation; patient
preoccupied with
intrusive repetitive
thoughts 46 hours
a day; patient
cooperative with
highly structured
treatment
Very poor to poor

motivation; patient
preoccupied with
intrusive repetitive
thoughts; patient
uncooperative
with treatment or
cooperative only in
highly structured
environment
Co-occurring
Presence of comorbid condition may influence choice of level of care
disorders
(substance use,
depression,
anxiety)
Any existing psychiatric

disorder that would
require hospitalization
(i.e., severe
depression, addiction,
self-harm)
Structure
needed for
eating/gaining
weight
Selfsufficient
Needs supervision
during and after all
meals or nasogastric/
special feeding
modality
Ability to
control
compulsive
exercising
Can manage Some degree of external structure beyond self-control required to prevent
compulsive
patient from compulsive exercising; rarely a sole indication for increasing the
exercising
level of care
through selfcontrol
Selfsufficient
Needs some
structure to gain
weight
Needs supervision
at all meals or will
restrict eating
Page |28
Level One:
Outpatient
Level Two:
Intensive
Outpatient
Level Three:
Level Four:
Partial
Residential
(Full-day
Outpatient Care)

Treatment
Purging
behavior
(laxatives and
diuretics)
Can greatly reduce incidents of purging

in an unstructured setting; no significant
medical complications, such as cardiac or
other abnormalities, suggesting the need for
hospitalization
Can ask for and use

support from others
or use cognitive and
behavioral skills to
inhibit purging
Environmental
stress
Others able to provide

adequate emotional and
practical support and
structure
Severe family conflict or problems or absence

of family so patient is unable to receive
structured treatment in home; patient lives
alone without adequate support system
Geographic
availability
of treatment
program
Patient lives near treatment setting
Others able to
provide at least
limited support
and structure
Needs supervision
during and after
all meals and in
bathrooms; unable
to control multiple
daily episodes of
purging that are
severe, persistent,
and disabling, despite
trials of outpatient
care, even if routine
laboratory test results
reveal no obvious
abnormalities
Treatment program is too distant for patient

to participate from home
Page |29
Finding Treatment for Your Loved Ones Eating Disorder

Getting a diagnosis is only the first step towards recovery from an eating disorder. Once you have a diagnosis, the
next step involves identifying availability of clinical resources for treatment. Several major factors will likely play a
role in determining the best type of treatment for your family member:
Specific eating disorder diagnosis
Medical/psychiatric status
Location in the country
Availability of local experts and programs
Insurance coverage
Ability to pay in the absence of insurance
Family/patient preferences on the most appropriate type of treatment
Likelihood of recovery in outpatient treatment
Many people utilize a treatment team to treat the multi-faceted aspects of an eating disorder. Treatment teams
commonly include the following types of providers:
Physician (primary care physician, pediatrician, cardiologist, etc.)
Psychotherapist
Dietitian
Psychiatrist
Additional therapists as required (yoga therapist, art therapist, etc.)
Case manager at your insurance company (if needed)
For more information on different types of treatment, see the glossary on page 41 at the end of this section.
A large portion of eating disorder sufferers can be treated as outpatients, so make sure that your physician has
experience with these conditions. Needing to seek a higher level of care is fairly common and not a sign that
recovery is impossible. A primary care physician, such as a pediatrician, internist, or family doctor, may have
referrals to local therapists and dietitians who have experience in treating eating disorders, as might other
specialists like adolescent medicine physicians and gynecologists. Not all areas have such clinicians available, nor
are all physicians familiar with eating disorder treatment.
If you cant get any referrals from your physician, there are still some ways to find good treatment providers. The
following websites have lists of outpatient therapist and treatment programs that address eating disorders:
National Eating Disorders Association (NEDA) http://www.nationaleatingdisorders.org/find-treatment
Academy for Eating Disorders (AED) http://aedweb.org
Local chapters of IAEDP professionals http://www.iaedp.com/overview%2017%20Chapters.htm
Certified Family-Based Treatment providers http://train2treat4ed.com/
ED Referral.com http://www.edreferral.com
Local colleges and universities may have lists of nearby therapists for students with eating disorders, so it might be
worthwhile to call their counseling or health center to ask for a referral. Larger treatment programs in your state or
bordering states may also have a network of therapists and treatment providers who work with eating disorders.
Page |30

Types of psychotherapy
Perhaps one of the most important considerations
when you and your loved one select a psychotherapist
is the type of therapy they provide. Different therapies
work differently for different people, and some may
be more helpful than others for where your loved one
currently is in their recovery. Reducing eating disorder
behaviors is generally considered to be the first goal of
treatment, and the following therapies currently have
the most evidence for effectiveness.
Acceptance and Commitment Therapy (ACT). The

goal of ACT is focusing on changing your actions rather
than your thoughts and feelings. Patients are taught to
identify core values and commit to creating goals that
fulfill these values. ACT also encourages patients to
detach themselves from emotions and learn that pain
and anxiety are a normal part of life. The goal isnt to
feel good, but to live an authentic life. Through living a
good life, people often find they do start to feel better.
Family Based Therapy (FBT). Also known as the

Maudsley Method or Maudsley Approach, this is a
home-based treatment approach that has been shown
to be effective for adolescents with anorexia and
bulimia. FBT doesnt focus on the cause of the eating
disorder but instead places initial focus on refeeding
and full weight restoration to promote recovery. All
family members are considered an essential part of
treatment, which consists of re-establishing healthy
eating, restoring weight and interrupting compensatory
behaviors; returning control of eating back to the
adolescent; and focusing on remaining issues.
Behavioral Systems Family Therapy (BSFT). Parents

are coached to help the sufferer restore adequate
nutrition and eat regular meals and snacks. BSFT also
broadens the focus of treatment to include cognitions
and problems in family structure while the parents
are still in charge of the re-feeding process.
Cognitive behavioral therapy (CBT) and Enhanced

Cognitive behavioral therapy (CBT-E). A relatively
short-term, symptom-oriented therapy focusing
on the beliefs, values, and cognitive processes that
maintain the eating disorder behavior. It aims to modify
distorted beliefs and attitudes about the meaning of
weight, shape and appearance, which are correlated
to the development and maintenance of the eating
disorder.
Interpersonal Psychotherapy (IPT). This is a shortterm individual psychotherapy. It is premised on the
theory that interpersonal difficulties contribute to the
onset and maintenance of eating disorder symptoms,
and that their resolution will promote recovery. It has
predominately been applied to treatment of bulimia
nervosa and binge eating disorder, and focuses on
interpersonal difficulties rather than behavioral aspects
of disordered eating.
In addition to the above evidence-based treatments,
the following (listed in alphabetical order) are
commonly used to help eating disorder sufferers move
towards recovery.
Cognitive Remediation Therapy (CRT). CRT aims to

develop a persons ability to focus on more than one
thing. CRT targets rigid thinking processes considered
to be a core component of anorexia nervosa through
simple exercises, reflection, and guided supervision.
CRT is currently being studied to test effectiveness in
improving treatment adherence in adults with anorexia;
it has not currently been tested in other eating
disorders.
Conjoint Family Therapy (CFT). This is a therapeutic
approach that treats the entire family, including
the eating disordered member, simultaneously. The
premise of CFT is that the client exists within a family
and spends most of their time with them. Focus is on
improving family dynamics that may be contributing to
maintaining the eating disorder.
Dialectical Behavior Therapy (DBT). A behavioral
treatment supported by empirical evidence for treat
ment of binge eating disorder, bulimia nervosa and
anorexia nervosa. DBT assumes that the most effective
place to begin treatment is with changing behaviors.
Treatment focuses on developing skills to replace
maladaptive eating disorder behaviors. Skills focus on
building mindfulness skills, becoming more effective
in interpersonal relationships, emotion regulation,
and distress tolerance. Although DBT was initially
developed to treat borderline personality disorder, it is
currently being used to treat eating disorders as well as
substance abuse.
Page |31
Family Systems Therapy (FST). FST emphasizes family

relationships as an important factor in psychological
health. Therapy interventions usually focus on
relationship patterns and communication rather than
on analyzing impulses or early experiences that may
have contributed to development of the ED. Family
Systems Therapy is different from FBT in that it focuses
on the interactions between family members as a way
to improve eating disorder behaviors.
Psychodynamic Psychotherapy. The psychodynamic
approach holds that recovery from an eating disorder
requires understanding its root cause. Psychodynamic
psychotherapists view behaviors as the result of
internal conflicts, motives and unconscious forces, and
if behaviors are discontinued without addressing the
underlying motives that are driving them, then relapse
will occur. Symptoms are viewed as expressions of the
patients underlying needs and issues and are thought
to disappear with the completion of working through
these issues.
Separated Family Therapy (SFT). In SFT, the adolescent
is seen on his or her own and the parents are seen in
a separate session by the same therapist. This differs
from Conjoint Family Therapy (CFT) where the patient
and family are seen together. Both are effective, but
the separate parallel sessions in SFT are favored in
cases where there is a high degree of hostility or
parental criticism.
(some definitions adapted from FEASTs Glossary of
Eating Disorders.)
It is important to note that while all of these therapies
are frequently used to treat individuals with eating
disorders, they have varying levels of efficacy and
research supporting their use. Many professionals now
recommend the use of evidence-based treatment,
which is the conscientious, explicit and judicious use
of current best evidence in making decisions about the
care of individual patients. In eating disorder therapies,
evidence-based treatment usually means that the
therapy has been used in a research study and found
to be effective in reducing eating disorder symptoms,
encouraging weight restoration in underweight patients,
and decreasing eating disorder thoughts.
Some trials of eating disorder psychotherapies are small
and are not necessarily compared to other forms of
psychotherapy, which can make it difficult to compare
the efficacy of various treatments. Other factors that
make testing ED therapies difficult include the relative

rarity of eating disorders, high patient drop-out rates,
and large costs. Generally speaking, CBT, DBT, ACT, and
FBT are currently some of the best-studied commonlyused eating disorder treatments supported by several
different studies around the world.
Its important to remember that just because a therapy
is classified as evidence-based doesnt mean that it
automatically works for everyone; just that it works for
many patients. Do some research and evaluate which
types of treatments would best target the symptoms
and psychological issues being faced by your loved
one. Also keep in mind that not all therapists who say
they utilize a type of treatment actually use it in all
of their sessions. Some CBT therapists, for example,
might have a primarily psychodynamic approach and
only occasionally use CBT principles. So be sure to ask
about how strictly the therapist adheres to treatment
guidelines, what a typical session might consist of,
how much training the therapist has received in this
particular treatment modality, the rough percentage
of patients who they treat using this form of
psychotherapy, and how current their ED knowledge
base is.
Selecting a psychotherapist
Just as not all psychotherapies are created equal, not
all therapists are created equally either. It matters
less how long a specific therapist has been practicing
and more on how skilled they are at treating eating
disorders and how up-to-date their knowledge is.
Although there may be exceptions, eating disorder
treatment generally addresses the following factors in
roughly this order:
1. Correct life-threatening medical and psychiatric
symptoms
2. Interrupt eating disorder behaviors (food
restriction, excessive exercise, binge eating,
purging, etc.)
3. Establish normalized eating and nutritional
rehabilitation
4. Challenge unhelpful and unhealthy eating disorder
and ED-related thoughts and behaviors
5. Address ongoing medical and mental health issues
6. Establish a plan to prevent relapse
Page |32
Questions to ask when interviewing a therapist

How long have you been treating eating
disorders?
What is the best way to communicate with you

between sessions?
What are your training credentials? Have you

received specialized training in eating disorders?
Do you charge for phone calls or emails

between sessions? How is that billed?
Are you a member of any eating disorder

professional organizations?
How do you handle medical or psychiatric

emergencies?
What do you think causes eating disorders?
What are some warning signs of immediate

danger that I should be aware of?
What do you think needs to happen in order

for my loved one to get well?
How will I be involved in my loved ones
treatment?
How would you describe your treatment style?
What forms of psychotherapy do you use?
What happens during a typical psychotherapy
session?
How will you evaluate my loved one and
develop a treatment plan?
What are the goals of treatment?
When can I start to expect seeing progress?
When will I be notified if my loved one is not
making progress?
How often will progress be communicated?
What are the criteria you use to determine
whether a treatment is working?
How long will you give a treatment to start
working before you re-evaluate?
If my loved one doesnt respond to the first
form of treatment, what steps would you
recommend?
What kind of medical information do you need
about my loved one before treatment begins
and as therapy is ongoing?
How will you work with other members of
the treatment team? How frequently will you
share information? How will you do this (email,
phone, etc)?
Are you able to communicate with my loved
ones school should the need arise?
What are your thoughts on psychotropic
medication?
What are your criteria for moving a person to a

higher level of care?
What is your appointment availability? Do you
have evening or weekend appointments?
How long does each session last?
How frequently will you need to see my loved
one?
How often will you meet with me/us as
parents?
Do you accept my insurance? If not, what do
you charge?
Do you deal directly with the insurer or do I
need to do that?
Do you have a sliding scale?
When is payment due?
The availability of eating disorder therapists can vary
widely depending on location, as can an individuals
insurance benefits. It may take a bit of persistence to
find a treatment provider who will work well with your
family, provide effective treatment, and also accepts
insurance or is otherwise affordable. Many families
have found that they need to travel a bit to find good
treatment, but that excellent care is worth the hassle.
Medication for Eating Disorders

Besides psychotherapy, medication is probably one
of the most commonly used forms of eating disorder
treatment. It is rarely used as a stand-alone treatment,
but generally is meant to help relieve symptoms of cooccurring disorders like depression and anxiety, as well
as reduce the discomfort (physical and mental) caused
by normalizing eating. Only one medication has been
Page |33
approved by the FDA to treat bulimia nervosa, and

very few have been approved for weight management
in overweight individuals. Nevertheless, medications
are commonly tried in combination with psychosocial
interventions for patients with the range of eating
disorders.
Medication names: Generic (Brand)
Frequently prescribed for eating disorder patients
Selective Serotonin Reuptake Inhibitors (SSRIs)
Fluoxetine (Prozac, Sarafem) **This is

currently the only FDA-approved medication
to treat an eating disorder, and is approved
for the treatment of bulimia
Atypical Anti-psychotic Medications
Aripiprazole (Abilify)
Olanzapine (Zyprexa)
Quetiapine (Seroquel)
Risperidone (Risperdal)
Ziprasidone (Geodon)
Less frequently prescribed for eating disorder patients
Tricyclics
Amitriptyline (Elavil)
Clomipramine (Anafranil)
Citalopram (Celexa)
Desipramine (Norpramin, Pertofrane)
Escitalopram (Lexapro)
Imipramine (Janimine, Tofranil)
Fluvoxamine (Luvox)
Nortriptyline (Aventyl, Pamelor)
Paroxetine (Paxil)
Sertraline (Zoloft)
Serotonin and Noradepinephrine Reuptake Inhibitor
Duloxetine (Cymbalta)
Venlafaxine (Effexor)
Desvenlafaxine (Pristiq)
Aminoketone
Bupropion (Wellbutrin, Zyban): Now

contraindicated for treatment of eating
disorders because of several reports of
drug-related seizures among individuals with
bulimia nervosa.
Benzodiazepines
Alprazolam (Xanax)
Chlordiazepoxide (Librium)
Clonazepam (Klonopin)
Diazepam (Valium)
Lorazepam (Ativan)
Modified Cyclic Antidepressants
Trazodone (Desyrel)
Monoamine Oxidase Inhibitors
Brofaromine (Consonar)
Isocarboxazide (Benazide)
Moclobemide (Manerix)
Phenelzine (Nardil)
Tranylcipromine (Parnate)
Tetracyclic Antidepressants
Mianserin (Bolvidon)
Mirtazapine (Remeron)
Mood Stabilizers (also used for anti-binge properties,
especially those at higher weights)
Lithium carbonate (Carbolith, Cibalith-S,

Duralith, Eskalith, Lithane, Lithizine, Lithobid,
Lithonate, Lithotabs): Used for patients
who also have bipolar disorder, but may be
contraindicated for patients with substantial
purging.
Page |34
Mood Stabilizers (continued)
Carbamazepine (Equetro, Tegretol)

Divalproex (Depakote)
Lamotrigine (Lamictal)
Oxcarbazepine (Trileptal)
Topiramate (Topamax)
Calproate (Depakene syrup)
Other therapies to consider

Some people with eating disorders find benefit from
alternative or adjunct therapies. Many of these types of
therapies dont have a lot of research supporting them,
but many sufferers report finding them useful. Consult
with your treatment providers and your family member
to determine whether any of these might be helpful for
your loved one.
Art therapy
Biofeedback
Coaching
Emailing for support or coaching
Equine-assisted psychotherapy
Eye movement desensitization (EMDR)
Exercise
Hypnotherapy
Journaling
Massage
Meditation
Movement therapy
Psychodrama
Relaxation training
Yoga
Page |35
Questions to Ask a Treatment Provider Privately

You may have some questions for a treatment provider that you may prefer to ask privately, without your family
member nearby. The following are some questions that other parents and loved ones have found useful to ask
when the eating disorder sufferer is out of earshot. Be aware that the clinician may not be able to provide you with
an answer on the spot and may need time to get back to you. If you are not satisfied with their answers, ask the
treatment provider to clarify their responses, or find another clinician. Do not let a treatment provider push you to
the background or be dismissive of your concerns.
How can I support my loved ones recovery?
Which books, websites, and other resources should
I read about eating disorders?
How often will I be updated on his/her progress?
What is the best method to use to contact you with
concerns I might have between sessions?
Should I monitor my childs computer usage? What

sites should I be on the lookout for?
What should I do if my family member does
not want to discuss his/her eating disorder or
treatment with me?
What should I do if my child is unable or unwilling

to participate in treatment?
What should I do if my loved one says they want to

pursue recovery their own way, or that they will eat
when they are ready? How can I help them work
towards recovery and keep them safe?
Can my loved one be admitted to treatment involuntarily? What are the criteria for making those
decisions? What steps would need to be taken?
If my family member is obsessed with food,

cooking, or fitness, how can I best limit these
activities?
What will happen if my loved one needs a higher

level of care? How will that decision be made?
What can I do if my family member wants to

dictate the familys eating or food habits? How do I
set appropriate boundaries?
(if a loved one is temporarily living at a facility) How

should I prepare for my loved ones return home?
What are common signs of self-harming behavior?
How do I prevent self-harming in my loved one?
What are signs that my family member is purging?
Exercising in secret? Hiding/throwing away food?
How do I prevent purging at home and at school/
elsewhere?
What steps should I take if I discover my loved one
is purging?
How do I prevent excessive or compulsive exercise?
What steps should I take if I discover my loved one
exercising?
How can I help my child tackle his/her fear
foods? How can I help expand the foods he/she is
willing to eat?
What happens if my loved one refuses a meal or
snack? What happens next?
What should I do if I discover my loved one is binge
eating? If I interrupt them mid-binge?
How do I respond if I discover eating disorder
paraphernalia (scales, diet pills, measuring tapes,
etc.) that my loved one has hidden or is using?
Is it a good idea for my loved one to have a

job related to food or exercise while they are
recovering?
Should my family member be involved at all
in grocery shopping, or meal planning and
preparation?
If my loved one needs to gain weight,
approximately how much weight should they gain
per week?
What kind of support should I provide to my family
member during refeeding?
What treatment provider will be responsible for
weighing my family member? If you want me to
weigh my child at home, what procedures should I
follow?
How do I provide support during mealtimes?
What should I do if my loved one experiences
aggressive or impulsive behavior during treatment?
What are signs of a medical or psychiatric emer
gency? Who should I call? When should I take my
loved one to the emergency room or call 911?
Page |36
Selecting a Treatment Center for Your Loved One

If your loved one is struggling with outpatient
treatment or needs a higher level of care, you will need
to consider several different options. Finding a program
or physician that has expertise in treating all aspects of
eating disorders is crucial.
Determining level of care
Several types of treatment centers and levels of care
are available for treating eating disorders. Knowing
the terms used to describe these is important because
insurance benefits (and the duration of benefits) are
tied not only to a patients diagnosis, but also to the
type of treatment setting and level of care.
Treatment is delivered in hospitals, residential
treatment facilities, and private office settings. Levels
of care consist of acute short-term inpatient care,
partial inpatient care, intensive outpatient care (by
day or evening), and outpatient care. Acute inpatient
hospitalization is necessary when a patient is medically
or psychiatrically unstable. Once a patient is medically
stable, he/she is discharged from a hospital, and
ongoing care is typically delivered on an outpatient
basis or at a subacute residential treatment facility,
where the individual lives in a home or dormitory
setting. The level of care in such a facility can be fulltime inpatient, partial inpatient, intensive outpatient by
day or evening, and outpatient. There are also facilities
that operate only as outpatient facilities. Outpatient
psychotherapy and medical follow-up may also be
delivered in a private office setting.
The level of care your loved one needs will depend
on a variety of factors. The most important factor
is medical and psychiatric safety, which may require
hospitalization before selecting a more specialized
program. Hospitalization may be required for
complications of the disorder, such as electrolyte
imbalances, irregular heart rhythm, dehydration,
severe underweight, or acute life-threatening mental
breakdown. Partial hospitalization may be required
when the patient is medically stable, and not a threat
to him/ herself or others, but still needs structure to
continue the healing process. Partial hospitalization
programs last between 3 and 12 hours per day,
depending on the patients needs. As the patient
improves, they will typically move to less intensive and
less structured programs.
Other factors influencing level of care are the goals of

treatment. Generally, the following issues are typically
treated in this order:
medical and psychiatric stabilization
stopping destructive behaviors (i.e., restricting
foods, binge eating, purging/nonpurging)
addressing and resolving any coexisting mental
health problems that may be triggering the
behavior
Be aware that normalization of eating patterns can take
months to establish themselves in the patients dayto-day life. It is important to remember that seeking
intensive eating disorder treatment is only the first step
towards recovery. Recovery from an eating disorder
is an active, ongoing process, and they will continue
to need lots of support at mealtimes and elsewhere
long after discharge. This is why family involvement
in treatment is so important: you need to learn how
to help manage your loved ones eating disorder after
they are discharged. High levels of support, whether
through a step-down program, family involvement, or
both, can help stop a revolving door of admissions and
discharges.
Selecting an appropriate eating disorder treatment
program
First, you will need to find a treatment program
that meets your loved ones needs. Consulting with
your family members treatment providers and
recommendations should give you a good idea of what
level of care is most appropriate and what aspects of
the eating disorder most need addressing.
Second, determine whether a particular level of care
and specific treatment center is covered by your
insurance carrier, and whether the treatment facility
accepts insurance. If the treatment center is not part
of the health insurers system (out-of-network), the
insurer may pay a percentage of the treatment costs,
with the patient responsible for the remainder. It is
best to negotiate this percentage with the insurer
before starting treatment. If your insurance does
not provide any coverage, you need to determine
whether you and/or your loved one will be able to
pay for treatment without insurance. A small number
of treatment centers offer financial assistance; but
most do not. However, inquiring whether a facility is
able to work with your current financial situation may
Page |37
be worth investigating if the patient does not have

financial resources or insurance. If you are having
trouble obtaining insurance coverage for your loved
ones eating disorder treatment, see page 45 for more
information.
Thirdly, determine the philosophy of the treatment
facility and the type of care they provide. Is the centers
view of eating disorders supported by up-to-date
research? Does it support ideas of eating disorder
causes and recovery that are congruent with your
familys situation? Does it encourage or require a high
level of family involvement?
In addition, evidence-based treatment is increasingly
emphasized, meaning that many eating disorder
programs advertise that they use these types of
treatments. Its important to check how frequently
these therapies are used, and the qualifications of
the therapists providing them. Many facilities have
also begun advertising their efficacy via outcome
studies. However, residential treatment hasnt been
studied for efficacy in randomized control trials, and
long-term outcomes have not been followed. Some
treatment centers will only evaluate people who
were not discharged prematurely, or they may only
assess individuals who returned surveys, which could
be biased towards individuals who are doing well.
The eating disorder community also does not have a
standard definition of what recovery looks like, which
can make interpreting these studies even harder. Dont
ignore these data, but interpret them with caution.
Lastly, think about what will happen after discharge.
Does the program have a step-down program
or is there another one that you intend to use?
Discharge plans can be complicated and require much
coordination of care among different healthcare
providers. That takes time. Effective discharge planning
needs to start much earlier than a day or two before
the patient is expected to be discharged from a facility.
Other factors to consider when selecting a
treatment center include religious affiliation (if any),
multidisciplinary approach to care, distance from
home, staff/patient ratio, professional qualifications
of staff, their experience in treating eating disorders,
and adjunct therapies offered. Some treatment
centers provide therapies in addition to psychiatric
counseling and pharmacotherapy, like equine therapy,
massage, dance, or art therapy. These therapies may

be appealing, although there is no evidence for these
being essential to treatment response, and they may
not be covered by your health insurance.
Determining Quality of Care
Determining the quality of care offered by a center
is difficult at this time. No organization yet exists to
specifically accredit treatment centers for the quality
and standard of eating disorder-specific care. Leaders
within the national eating disorders community
organized in mid-2006 to develop care standards
and a process for accrediting eating disorder centers.
That effort is ongoing. One national organization,
the Joint Commission on Accreditation of Healthcare
Organizations (JCAHO), provides generic accreditation
for healthcare facilities, and some eating disorder
centers advertise JCAHO accreditation. JCAHO
accreditation does not link directly to quality of care
for treatment of eating disorders; it assesses safety
and credentials of staff. Another issue regarding
quality of care is that much care is delivered on an
outpatient basis. For individual psychotherapists in
private practice, no special credentialing or specialty
certification exists regarding treatment of eating
disorders. Thus, any mental healthcare professional
can offer to treat an eating disorder whether or not
he/she has experience or training in this specific area.
Therefore, it is important to ask a prospective therapist
about his/her knowledge about eating disorders and
years of experience treating them.
Professionals in a Multi-disciplinary Care Team
Primary care physician (i.e., family doctor,
internal medicine doctor, pediatrician,
gynecologist)
Psychiatrist
Nutritionist
Clinical psychologist
Social worker
Claims advocate for reimbursement
Other professionals who administer
supplemental services such as massage, yoga,
exercise programs, and art therapy
Page |38

Questions to Ask When Seeking a Treatment Center
Does the center accept the patients insurance? If
so, how much will it cover?
Does the center offer help in obtaining
reimbursement from the insurer?
Does the center offer financial assistance?
How long has the center been in business?
What is its treatment philosophy?
Does the center have any religious affiliations and
what role do they play in treatment philosophy?
Does the center provide multidisciplinary care?
Who will be coordinating my loved ones
treatment?
Is the location convenient for the patient and his/
her support people who will be involved through
recovery?
If family cannot participate in treatment in-person,
what alternatives are there?
What security does the facility have in place to
protect my loved one?
How quickly will you complete a full assessment of
my child?
Prior to traveling to the treatment center: what
are your specific medical criteria for admission and
will you talk with my insurance company before we
arrive to determine eligibility for benefits?
What is expected of the family during the persons
stay?
Anorexic-specific: Please describe your strategy
for accomplishing refeeding and weight gain, and
please include anticipated time frame.
How are target weights determined?
How do you handle food refusal?
What steps do you take to prevent purging?
Compulsive exercise?
What happens if my child needs a higher level of
care? How do you make that decision?
If my child does not start to make progress, what
will happen?
Who is the best person to whom I should fax my
loved ones treatment history and medical records?
What are the visiting guidelines for family or
friends?
What levels of care does the center provide? Please
define criteria for each level mentioned.
What types of professionals participate on the care

team and what is each persons role?
What are the credentials and experience of the
staff?
How many hours of treatment are provided to a
patient each day and week?
Which professional serves as team leader?
What types of therapy does the center consider
essential? Optional?
What is the patient-staff ratio?
What is the rate of turnover (staff resigning) for
clinical staff?
How is that handled with patients?
Who will the patient have the most contact with on
a daily basis?
What is the mealtime support philosophy?
Who will update key family or friends? How often?
How is care coordinated for the patient inside the
center and outside if needed?
How does the center communicate with the
patients family doctors and other doctors who
may routinely provide care?
What are your criteria for determining whether a
patient needs to be partially or fully hospitalized?
What happens in counseling sessions? Will there be
individual and group sessions?
Will there be family sessions?
How will family be prepared for the patients
discharge?
How does the care team measure success for the
patient?
How do you decide when a patient is ready to
leave?
How is that transition managed with the patient
and family?
What after-care plans do you have in place and at
what point do you begin planning for discharge?
What follow-up care after discharge is needed and
who should deliver it?
Does the patient have a follow-up appointment
in hand before being discharged? Is the follow-up
appointment within 7 days of the discharge date?
When is payment due?
Page |39
Treatment Glossary
Antidepressants Prescription medications that
are FDA-approved for the treatment of major
depression, anxiety, or obsessive-compulsive
disorder. They are also used to treat eating disorders
with the goal of alleviating the depression and
anxiety that often coexist with an eating disorder.
Behavior Therapy (BT) A type of psychotherapy
that uses principles of learning to increase the
frequency of desired behaviors and/or decrease
the frequency of problem behaviors. Subtypes of
BT include dialectical behavior therapy (DBT) and
exposure and response prevention (EXRP).
Cognitive Therapy (CT) A type of
psychotherapeutic treatment that attempts to
change a patients feelings and behaviors by
changing the way the patient thinks about or
perceives his/her significant life experiences.
Subtypes include cognitive analytic therapy and
cognitive orientation therapy.
Cognitive Analytic Therapy (CAT) A type of
cognitive therapy that focuses its attention on
discovering how a patients problems have evolved
and how the procedures the patient has devised
to cope with them may be ineffective or even
harmful. CAT is designed to enable people to gain
an understanding of how the difficulties they
experience may be made worse by their habitual
coping mechanisms. Problems are understood in
the light of a persons personal history and life
experiences. The focus is on recognizing how these
coping procedures originated and how they can be
adapted.
Cognitive Behavior Therapy (CBT) CBT is a goaloriented, short-term treatment that addresses
the psychological, familial, and societal factors
associated with eating disorders. Therapy is
centered on the principle that there are both
behavioral and attitudinal disturbances regarding
eating, weight, and shape.
Cognitive Remediation Therapy (CRT) Since
patients with anorexia nervosa (AN) have a
tendency to get trapped in detail rather than seeing
the big picture, and have difficulty shifting thinking
among perspectives, this newly investigated brief
psychotherapeutic approach targets these specific
thinking styles and their role in the development
and maintenance of an eating disorder. Currently,
its usually conducted side by side with other forms

of psychotherapies and has only been tested in
individuals with anorexia nervosa.
Dialectical Behavior Therapy (DBT) A type
of behavioral therapy that views emotional
deregulation as the core problem in eating
disorders. It involves a structured, time-limited
therapy teaching people new skills to regulate
negative emotions and replace dysfunctional
behavior. (See also Behavioral Therapy.)
Equine/Animal-assisted Therapy A treatment
program in which people interact with horses
and become aware of their own emotional
states through the reactions of the horse to their
behavior.
Exercise Therapy An individualized exercise
plan that is written by a doctor or rehabilitation
specialist, such as a clinical exercise physiologist,
physical therapist, or nurse. The plan takes into
account an individuals current medical condition
and provides advice for what type of exercise to
perform, how hard to exercise, how long, and how
many times per week.
Exposure with Response Prevention (EXRP)
EXRP is a type of behavioral therapy effective at
treating Obsessive Compulsive Disorder (OCD). The
treatment strategy emphasizes graded exposure to
anxiety-provoking situations, such as feared foods,
and interruption of maladaptive anxiety-reducing
behaviors such as purging. (See also Behavioral
Therapy.)
Expressive Therapy A nondrug, nonpsychotherapy
form of treatment that uses the performing
and/or visual arts to help people express their
thoughts and emotions. Whether through dance,
movement, art, drama, drawing, painting, etc.,
expressive therapy provides an opportunity for
communication that might otherwise remain
repressed.
Eye Movement Desensitization and Reprocessing
(EMDR) A nondrug and nonpsychotherapy form of
treatment in which a therapist repetitively moves
an object in front of the patient and asks them to
focus on the item while also recalling a traumatic
event. It is proposed that the act of tracking while
concentrating allows a different level of processing
Page |40
to occur in the brain so that the patient can review

the event more calmly or more completely than
before.
Family Therapy A form of psychotherapy that
involves members of an immediate or extended
family. Some forms of family therapy are based
on behavioral or psychodynamic principles; the
most common form is based on family systems
theory. This approach regards the family as the
unit of treatment and emphasizes factors such as
relationships and communication patterns. With
eating disorders, the focus is on the eating disorder
and how the disorder affects family relationships.
Family therapies may also be educational and
behavioral in approach.
Interpersonal Therapy (IPT) IPT (also called
interpersonal psychotherapy) is designed to
help people with eating disorders identify and
address their interpersonal problems, specifically
those involving grief, interpersonal role conflicts,
role transitions, and interpersonal deficits. In
this therapy, no emphasis is placed directly on
modifying eating habits. Instead, the expectation is
that the therapy enables people to change as their
interpersonal functioning improves. IPT usually
involves 16 to 20 hour-long, one-on-one treatment
sessions over a period of 4 to 5 months.
Light therapy (also called phototherapy)
Treatment that involves regular use of a certain
spectrum of lights in a light panel or light screen
that bathes the person in that light. Light therapy
is also used to treat conditions such as seasonal
affective disorder (seasonal depression).
Massage Therapy A generic term for any of a
number of various types of therapeutic touch in
which the practitioner massages, applies pressure
to, or manipulates muscles, certain points on the
body, or other soft tissues to improve health and
well-being. Massage therapy is thought to relieve
anxiety and depression in patients with eating
disorders.
Maudsley Method, also called Family Based
Therapy (FBT) A family-centered treatment
program with three distinct phases. During the
first phase parents are placed in charge of the
childs eating patterns in hopes to break the cycle
of not eating, or of binge eating and purging. The
second phase begins once the childs refeeding

and eating is under control with a goal of returning
independent eating to the child. The goal of the
third and final phase is to address the broader
concerns of the childs development.
Mealtime Support Therapy Treatment program
developed to help patients with eating disorders
eat healthfully and with less emotional upset. It
generally centers around mealtime itself.
Motivational Enhancement Therapy (MET) A
treatment based on a model of change, with
focus on the stages of change. Stages of change
represent constellations of intentions and
behaviors through which individuals pass as they
move from having a problem to doing something
to resolve it. The stages of change move from
pre-contemplation, in which individuals show
no intention of changing, to the action stage,
in which they are actively engaged in overcoming
their problem. Transition from one stage to the
next is sequential, but not linear. The aim of MET
is to help individuals move from earlier stages into
the action stage using cognitive and emotional
strategies.
Movement/Dance Therapy The psychotherapeutic
use of movement as a process that furthers
the emotional, cognitive, social, and physical
integration of the individual, according to the
American Dance Therapy Association.
Nutritional Therapy Therapy that provides patients
with information on the effects of eating disorders,
techniques to avoid binge eating, and advice about
making meals and eating. For example, the goals
of nutrition therapy for individuals with bulimia
nervosa are to help individuals maintain blood
sugar levels, help individuals maintain a diet that
provides them with enough nutrients, and help
restore overall physical health.
Pharmacotherapy Treatment of a disease or
condition using clinician-prescribed medications.
Progressive Muscle Relaxation A deep relaxation
technique based on the simple practice of tensing
or tightening one muscle group at a time followed
by a relaxation phase with release of the tension.
This technique has been purported to reduce
symptoms associated with night eating syndrome.
Page |41
Psychoanalysis An intensive, nondirective form

of psychodynamic therapy in which the focus of
treatment is exploration of a persons mind and
habitual thought patterns. It is insight-oriented,
meaning that the goal of treatment is for the
patient to increase understanding of the sources of
his/her inner conflicts and emotional problems.
Psychodrama A method of psychotherapy in which
patients enact the relevant events in their lives
instead of simply talking about them.
Psychodynamic Therapy Psychodynamic theory
views the human personality as developing from
interactions between conscious and unconscious
mental processes. The purpose of all forms of
psychodynamic treatment is to bring unconscious
thoughts, emotions and memories into full
consciousness so that the patient can gain more
control over his/her life. Whereas psychoanalysis
views human behavior as resulting from drives
for sex and food, psychodynamic psychotherapy
focuses on the human need for attachment and
belonging.
Psychodynamic Group Therapy Psychodynamic
groups are based on the same principles as
individual psychodynamic therapy and aim to help
people with past difficulties, relationships, and
trauma, as well as current problems. The groups
are typically composed of eight members plus one
or two therapists.
Psychotherapy The treatment of mental and emo
tional disorders through the use of psychological
techniques designed to encourage communication
of conflicts and insight into problems, with the goal
being symptom relief, changes in behavior leading
to improved social and vocational functioning, and
personality growth.
Self-guided Cognitive Behavior Therapy A

modified form of cognitive behavior therapy in
which a treatment manual is provided for people
to proceed with treatment on their own, or with
support from a nonprofessional. Guided self-help
usually implies that the support person may or
may not have some professional training, but is
usually not a specialist in eating disorders. The
important characteristics of the self-help approach
are the use of a highly structured and detailed
manual-based CBT, with guidance as to the appro
priateness of self-help, and advice on where to
seek additional help.
Self Psychology A type of psychoanalysis that views
anorexia and bulimia as specific cases of pathology
of the self. According to this viewpoint, people with
eating disorders cannot rely on human beings to
fulfill their self-object needs (e.g., regulation of selfesteem, calming, soothing, vitalizing). Instead, they
rely on food (its consumption or avoidance) to fulfill
these needs. Self psychological therapy involves
helping people with eating disorders give up their
pathologic preference for food as a self-object
and begin to rely on human beings as self-objects,
beginning with their therapist.
Supportive Therapy Psychotherapy that focuses
on the management and resolution of current
difficulties and life decisions using the patients
strengths and available resources.
Telephone Therapy A type of psychotherapy
provided over the telephone by a trained
professional.
Psychoeducational Therapy A treatment

intended to teach people about their problem,
how to treat it, and how to recognize signs of
relapse so that they can get necessary treatment
before their difficulty worsens or recurs. Family
psychoeducation includes teaching coping
strategies and problem-solving skills to families,
friends, and/or caregivers to help them deal more
effectively with the individual.
Page |42
Insurance Issues
Page |43
Understanding Insurance Issues for

Eating Disorders Treatment
One of the most common questions received at the
National Eating Disorders Association is about issues
with insurance. Whether for outpatient therapy,
inpatient hospitalization, or anything in between,
understanding your policys benefits and obtaining
authorization for the appropriate level of care can be
confusing and frustrating. This section of the toolkit
will provide an introduction to some of the basic steps
involved in utilizing your insurance benefits to help pay
for a loved ones treatment.
Note: If your loved one is under 18, a parent/guardian
can legally act on their behalf without prior approval.
If your loved one is over 18, they will need to sign a
document letting you work with the insurance company
on their behalf, even if you are the parent/guardian
and the policy is in your name. A customer care
representative at the insurance company should be able
to tell you or your loved one what documents need to
be submitted to allow another person to act on his/her
behalf.
Proper treatment of an eating disorder must address
both the psychological and physical aspects of the
disorder. Many insurance companies have mental
health benefits (also known as behavioral health
benefits) under a separate umbrella from their
physical health benefits. The recent passage of mental
health parity means that, legally, mental health must
be covered on par with physical health. However,
the separation can still exist, and behavioral health
coverage may even be contracted out to a separate
company under the supervision of the insurer. All of
this combines to create a confusing patchwork array of
coverage and rules that can make obtaining proper care
for your loved one difficult.
For example, when a service is provided by a
doctor or facility, a billing code is needed to obtain
reimbursement for services. Certain rules and
regulations govern how services must be coded and
who can perform those services. Different types of
facilities and different healthcare professionals must
use codes that apply to that type of facility and health
professional. Also, if codes dont exist for certain
services delivered in a particular setting, then facilities
and health professionals have no way to bill for their
services. Codes used for billing purposes are set up
by various entities, such as the American Medical
Association, U.S. Medicare program, and the World

Health Organizations International Classification
of Diseases. Thus, even a patient with good health
insurance may face barriers to care simply because of
the way our healthcare system is set up.
Given that appropriate well-integrated treatment for
eating disorders can easily cost more than $30,000
dollars per month, even with insurance, an insured
individual is usually responsible for some portion of
those costs.
The first-line of decision making about health plan
benefits is typically made by a utilization review
manager or case manager. These managers review
the requests for benefits submitted by a healthcare
provider and determine whether the patient is entitled
to benefits under the patients contract. These
decision makers may have no particular expertise in
the complex, interrelated medical/mental healthcare
needs for an eating disorder. Claims can be rejected
outright or approved for only part of the recommended
treatment plan. Advance, adequate preparation on
the part of the patient or the patients support people
is the best way to maximize benefits. Prepare to be
persistent, assertive, and rational in explaining the
situation and care needs. Early preparation can avert
future coverage problems and situations that leave the
patient holding the lions share of bills.
The rest of this section will contain tips to help you
obtain the insurance benefits your loved one needs and
deserves so that they have the best chance possible to
recover from an eating disorder.
Educate yourself
Read the other information in the Parent Toolkit to
learn about eating disorders, treatment, current clinical
practice guidelines, and how you can best advocate
for and support the family member who has an eating
disorder. Refer to the latest evidence-based clinical
practice guidelines in this toolkit and have them in
hand when speaking to your health plan about benefits.
Be prepared to ask your health plan for the evidencebased information they use to create their coverage
policy for eating disorders.
Page |44
Read your plan
Document everything
Obtain a copy of the full plan description from the

health plans members website (i.e., the specific plan
that pertains to the insured), the insurer, or, if the
insurance plan is through work, the employers human
resources department. This document may be longer
than 100 pages. Do not rely on general pamphlets or
policy highlights. Read the detailed description of the
benefits contract to find out what is covered and for
how long. If you cant understand the information, try
talking with the human resources staff at the company
that the insurance policy comes through, with an
insurance plan representative (the number is on the
back of your insurance identification card), or with a
billing/claims staff person at facilities where you are
considering obtaining treatment. If hospital emergency
care is not needed, make an appointment with a
physician you trust to get a referral or directly contact
eating disorder treatment centers to find out how to
get a full assessment and diagnosis. The assessment
should consider all related physical and psychological
problems (other documents in this toolkit explain the
diagnostic or assessment process and testing). The four
main reasons for doing this are:
If you dont document it, it didnt happen. Its a saying

frequently used in the legal and insurance fields alike.
Insurance attorneys recommend documenting every
single contact you have with your loved ones insurer,
including the time and date of the call, the name of
the person with whom you spoke and their contact
information, and what was discussed during the
conversation. Experts also recommend keeping copies
of all written communication you receive from your
insurance companies, such as denial or approval letters,
explanations of benefits, and more. Some loved ones
have found it useful to organize everything in a folder, a
binder, or electronically.
To obtain as complete a picture as possible

about everything that is wrong
To develop the best plan for treatment
To obtain cost estimates before starting
treatment
To obtain the benefits the patient is entitled
to under his/her contract for the type of care
needed. For example, many insurers provide
more coverage benefits for severe mental
disorder diagnoses. Some insurers categorize
anorexia and bulimia nervosa as severe
disorders that qualify for extensive inpatient
and outpatient benefits, while others may not.
Medical benefits coverage also often comes into play
when treating eating disorder-associated medical
conditions, so diagnosing all physical illnesses present
is important. Other mental conditions often coexist
with an eating disorder and should be considered
during the assessment, including depression, trauma,
obsessive compulsive disorder, anxiety, social phobias,
and chemical dependence. These coexisting conditions
can affect eligibility for various benefits (and often can
mean more benefits can be accessed) and eligibility for
treatment centers.
If you decide to tape record any conversation, you must

first inform and ask the permission of the person with
whom you are speaking.
Confirm with the insurer that the patient has benefits
for treatment. Also ask about in-network and out-ofnetwork benefits and the eating disorder facilities that
have contracts with the patients insurance company,
because this affects how much of the costs the patient
is responsible for. If the insurer has no contract with
certain treatment facilities, benefits may still be
available, but may be considered out-ofnetwork. In
this case, the claims will be paid at a lower rate and the
patient will have a larger share of the bill.
You may also want to consider having an attorney in
mind at this point in case you need to consult someone
if roadblocks appear; however, avoid an adversarial
attitude at the beginning. Remember to keep complete
written records of all communications with every
contact at your insurance company. Other things to
remember:
Thank and compliment anyone who has
assisted you.
Youre more likely to receive friendly service
when you are polite while being persistent.
Send important letters via certified mail to
ensure they can be tracked and signed for at
the recipient location.
Set a timeframe and communicate when you
would like an answer. Make follow-up phone
calls if you have not received a response in that
timeframe.
Page |45
Dont assume one department knows

what the other department is doing. Copy
communications to all the departments,
including health, mental health, enrollment,
and other related departments.
Dont panic when and if you receive the first
denial. Typically, a denial is an automatic
computer-generated response that requires
a human override. Often you need to go up
at least one level, and perhaps two levels, to
reach the decision maker with authority to
override the automated denial.
Your insurance company only knows what you
and the treating professionals tell them. Make
sure they have all information necessary to
make decisions that will be of most benefit to
you or your loved one.
Make no assumptions. Your insurance company
is not the enemy but may be uninformed
about your case. Treat each person as though
he/she has a tough job to do.
Congress that allows people who have lost insurance

benefits to continue those benefits as long as they
pay the full premium and qualify for the program. See
www.cobrainsurance.com for more information. A
person eligible for COBRA has only 30 days from the
time of loss of benefits to enroll in a COBRA plan. It
is critical that the sign up for COBRA be done or that
option is lost. Be sure to get written confirmation of
COBRA enrollment from the plan. If the student is not
eligible for COBRA, an insurance company may offer a
conversion plan for individual coverage.
Obtain a case manager

A case manager will be a single person at your
insurance company who will handle your loved ones
case. This can make it easier to contact your insurance
company with questions and other issues, since you
will only have to make one phone call. As well, this
individual will become familiar with your loved ones
case, facilitating decision making.
Be aware that if the patient is a college student who

had to drop out of school to seek treatment and was
covered by school insurance or a parents insurance
policy, the student may no longer be covered if not
a full-time student. While many people will continue
working or attending school, some cannot. If this is
the case, its important to understand what happens
with insurance. Most insurance policies cover students
as long as they are enrolled in 12 credit hours per
semester and attend classes. Experts in handling
insurance issues for patients with eating disorders
caution that patients who have dropped out of school
should avoid trying to cover up that fact to maintain
benefits, because insurance companies will usually find
out and then expect the patient to repay any benefits
that were paid out.
If coverage has been lost, the student may be eligible to
enroll in a Consolidated Omnibus Budget Reconciliation
Act (COBRA) insurance program. COBRA is an Act of
Page |46
Obtaining Insurance Benefits for Higher Levels of Care

Many of the issues discussed in the previous section will be relevant to treatment at any level of care, but more
intensive treatment often brings up separate issues. Before an insurance company will cover eating disorder
treatment, they will conduct a utilization review. A utilization review occurs when your insurance company reviews
the insureds benefits to make sure that the services being requested are both covered and medically necessary.
A utilization review generally consists of several steps:
1. Precertification After completing a face-toface assessment with the patient, the assessing clinician will call the insurance company
to request authorization of services before
the patient begins treatment. The reviewers
generally ask for the five-axis diagnoses, height,
weight, recent behaviors, treatment history,
goals for treatment, and estimated length of
stay. A case manager (CM) is usually assigned
to the case during this initial call, several days
are usually authorized, and the next review is
scheduled.
2. Concurrent Review Several days are usually
authorized at a time and the insurance
companies request scheduled clinical updates
in order to authorize additional days. These
updates and requests for additional days
are called concurrent reviews. They are
usually done with the same care manager
every time. The CM generally asks for the
following information: current weight, vitals,
lab/bloodwork results, behaviors/struggles,
progress in treatment (individual work, family
work, insight development, etc.), mood/
affect, participation/motivation, discharge
plan, coordination with outpatient team, and
estimated length of stay.
a) It is very important to explain this process
to the patient as some patients may be
overwhelmed when they initially hear that
their insurance company has authorized 5
or 6 days and they plan to be in treatment
for weeks or months.
3. Discharge Summary Some insurance
companies request notification of the patients
discharge. The discharge summary usually
includes the following information: Five-Axis
diagnoses upon discharge (any changes?),
medications upon discharge, follow-up
appointments (names of providers, dates and
times of appointments), total number of days
used. This is usually a pretty quick call and its
not always required by insurance.
Other steps:
1. Clinical Case Consultation Occasionally
reviewers need to consult with other clinicians
or doctors before determining how many days
they will authorize. This generally happens
after the patient has been in treatment for a
while, appears to meet the criteria for medical
necessity, but may be getting close to requiring
a doc-to-doc review. This is not a denial.
After consulting with either the clinical team
at the insurance company or with the treating
doctor at the facility/clinic, the reviewer will
call back with an authorization and usually a
few additional questions for the next review.
2. Doc-to-Doc or Peer-to-Peer Review
Cases are usually sent for a doc-to-doc for
one of the following reasons:
a) The patient has been in treatment for long
enough that the reviewer is unable to
authorize additional days without involving
a doctor from the insurance company.
b) The patient does not clearly meet the
criteria for medical necessity and a doctor
must use his or her clinical expertise/
discretion to determine if the level of care
being requested is warranted.
c) If this happens, it is fairly indicative of
an upcoming denial within the next few
reviews.
d) Although the insurance company may not
always honor the request, it is perfectly
acceptable (and recommended) to
specifically request for the reviewer to be a
doctor who specializes in eating disorders.
3. Appeal If authorization is denied, a facility/
provider has the right to file an appeal and
conduct a review with a different doctor.
Page |47
Common Reasons for Denying Further Care

The most common (and frustrating) reason for a denial is the patient does not meet the criteria for medical
necessity. The specific criteria will vary from insurance company to insurance company, but some of the most
common criteria include:
1. Weightusually not low enough
2. Treatment History (mainly applies to precertification requests)
a) Patient has not tried a lower level of care prior to requesting a higher level of care
b) Patients condition is chronic and past treatments at the requested level of care have been ineffective
3. Lack of Progress in Treatment
a) Patient is not restoring weight
b) No reduction in behaviors
c) Lack of motivation in treatment
d) Inconsistent attendance
4. Absence of Behaviors (i.e. someone is doing too well in treatment and may be appropriate for a stepdown)
5. No medical complications
Page |48
Steps to Take When Determining Coverage Allowances

Determining how much coverage your loved one has can seem like figuring out a complicated series of math
problems. By breaking the task down into simpler, more manageable tasks, you can get the job done so that your
loved one gets the care they need and you dont get overwhelmed.
1. Obtain insurance info from patient. It is best to
get a copy of the actual insurance card.
a) Name of insurance company
b) ID #
c) Group #
d) Phone number (often labeled MH/SA or
provider services on back of card)
c) Deductible and Out-of-Pocket (OOP)

Maximum
i. What are the limits and how much of
each has the patient met to date?
ii. Is the deductible included in the OOP
max?
iii. Do copayments and coinsurance apply
to the deductible and OOP max?
e) Subscribers name, date of birth, and

relationship to patient (This is the
policyholders info)
3. Discuss benefits and estimated cost of

treatment with patient.
f) Employer (if it is a group policy)
4. Keep track of benefit utilization throughout

treatment and plan accordingly with patient.
g) Patients SSN and date of birth

h) Subscribers home address
2. Call insurance company to verify benefits. It
is best to record the call for future reference.
Be sure to inform the other person you are
recording. Verify the following:
a) Eligibility
i. Active policy?
ii. Effective date?
iii. Benefit year? This may be different
than the calendar year and it will affect
when the benefits renew.
5. DOCUMENT all communication with the

insurance company. It is amazing how many
times records need to be produced in order for
the claims to be paid accordingly.
a) Record phone calls if possible
b) Keep records of written correspondence
(faxes, e-mails, etc.)
c) Document the date and time of a call as
well as the name of the person you spoke
with. Also ask for a reference number if
possible.
b) Benefits
i. Does the member have benefits for the
services he or she is requesting?
ii. What is the copayment or coinsurance
for each type of service/level of care
(check whatever is relevant)
iii. Is there a limit? If so, how many
sessions have been used to date?
iv. Do the sessions cross-accumulate? (i.e.
Do OP or IOP days accumulate towards
total IP or PHP days allowed?)
Page |49
Strategies for Providers for Fighting Insurance Denial

Although this next section may be most useful for clinicians and treatment facilities to use directly, knowing
common strategies can help you formulate appeals for your loved one.
1. Weightnot low enough
a) Patients with severe EDs are often within
the normal weight range, especially with
Bulimia Nervosa and EDNOS
b) If the patient has dropped a significant
amount of weight or has fluctuated a lot
within the past few months or one year,
a higher level of care can be justified in
order to stabilize the behaviors. Basically
if you can show that the patient is on a
steep downward trajectory, the insurance
companies will often let you catch the
patient before he or she hits rock bottom.
c) The brain does not function at an optimal
level below about 90% IBW, so if a patient
meets the criteria in every other way but
his or her weight is not low enough, you
can make the argument that the patient
will actually be able to use program more
effectively than if he or she were at a lower
weight because the brain is nourished.
They will be in a better position to learn
and to implement the skills taught in
program.
2. Treatment History (mainly applies to
precertification requests)
a) Patient has not tried a lower level of care
prior to requesting a higher level of care
i. Emphasize the severity of behaviors
and risks of continuing behaviors (i.e.
This is so severe that we have to
stop it now. Patient is likely to fail at
a lower level of care. This failure will
waste valuable resources such as time,
money, and patients hope/motivation
for recovery.)
ii. Outpatient providers who have been
working with patient for X length of
time are recommending this level of
care (if applicable)
iii. Availability of programs (some areas
have scarce resources for treating
eating disorders, may not have many
treatment options available)
b) Patients condition is chronic and past

treatments at the requested level of care
have been ineffective
i. Emphasize any changes and give
concrete reasons why this treatment
will be different
1) Patients motivation, development
of insight (ex: Last time patient
was forced into treatment by
family/spouse. This time patient
requested treatment and wants to
change for himself/herself)
2) Changes in support system
3) Changes on Axis IV
4) Different treatment approach
5) Different goals for treatment
ii. Financial benefits If left untreated,
patient will end up in a higher, more
expensive, level of care
3. Lack of Progress in Treatment
a) Patient is not restoring weight
i. Weight restoration may not be the
focus of treatment (bulimia, BED, ED
NOS)
ii. Identify the reasons (usually behaviors)
and the planned intervention
strategies. This is usually enough to get
a few extra days to see if patient can
start to restore.
b) No reduction in behaviors
i. Highlight progress in other areas and
explain how this progress will lead to a
reduction in behaviors.
ii. Have a plan ready for interventions
moving forward to reduce behaviors.
For example, we discovered that a
patient had been exercising in her
room at night, so we created a protocol
for staff to check on the patient every
X minutes and required her to keep
her door slightly open. The reviewer
understood that the protocol would
likely disrupt the patients behaviors so
she authorized additional days.
Page |50
c) Lack of motivation in treatment

i. Discuss external influences on the
patients motivation (i.e. stress within
family) and emphasize the need for
ongoing support during this difficult time.
Also emphasize the triggering effects
of these external influences and the
likelihood of relapse if patient is stepped
down too soon.
ii. Highlight anything patient has said or
done which would indicate patient wants
recovery
iii. Change something (medications,
structure, schedule, therapeutic approach,
anything that could spark a change)
d) Inconsistent attendance
i. If absences were planned or for legitimate
reasons, the explanation should be
enough. However, it always helps to
discuss the reasons in clinical terms
related to the patients recovery. (Ex: The
patients schedule was modified to allow
her to work a few shifts per week. This
was discussed with the treatment team
and will alleviate some of the financial
burdens that have distracted her from
focusing 100% on recovery. She has
worked with her dietary team to plan
meals and structure outside of treatment).
ii. If absences were not planned or were not
for legitimate reasons, discuss the next
steps the treatment team plans to take
in order to encourage attendance. It is
important to convey that the treatment
team takes absences very seriously. It is
also important to emphasize the patients
need for extra support during this time. It
does not hurt to speculate about the costs
of terminating treatment while the patient
is struggling.
iii. Frame it as struggling with the ED and
discuss interventions moving forward
4. Absence of Behaviors (i.e., patient is doing too

well in treatment and may be appropriate for a
step-down)
a) Continued weight restoration is imperative
for a successful recovery. Stepping down now
would slow or stop restoration altogether. (This
argument is especially effective with patients
who have previously failed at restoring weight
on an outpatient or IOP basis.)
b) The patient has been using the program very
effectively and is learning healthy coping
skills. The patient is challenging herself with
new skills and will benefit from additional
time to practice these skills in a structured
environment.
c) The patient will have several meals off within
the next week. The patient must complete
several successful meals off before we
can determine that a step-down would be
appropriate. If the patient struggles with
the meals off, he or she will benefit from the
continued structure of program in order to
identify and address the issues that arise.
d) Emphasize the emotional/MH issues that
contribute directly to the ED and the patients
need for continued structure and support
while beginning to address these issues.
5. No medical complications
a) Emphasize the medical issues that the patient
will likely develop if the behaviors continue.
Serious, internal, long-term damage is not
always apparent right away.
b) Dig for more information from the patient
and/or medical providers. Patients often
minimize or deny medical issues out of
embarrassment and may be more forthcoming
once they understand the benefits of
disclosing the information.
c) Check the medical necessity criteria.
Sometimes this is cited as a reason for denial
even if it is not a criterion. In that case you
have a pretty simple rebuttal.
Page |51
How to Manage an Appeals Process

The arguments for appeals will be similar if not identical to the arguments provided in the above section. So, in
addition to the arguments already given, here are some tips for filing appeals:
1. Request the specific reason for denial in the
first place. Many reviewers will just cite does
not meet criteria for medical necessity as
a reason. This is not good enough. Ask for
specific criterion that is not being met in the
reviewers opinion. This will help you formulate
a more concise argument for the appeal.
2. Request a copy of the medical necessity criteria
being used to make the determination. If they
direct you to the website, ask them to guide
you to the correct page over the phone (It
can be very difficult to find online and I have
spoken to plenty of reviewers who struggle
to find it themselves). Having the exact
terminology and wording at your disposal will
also help you to formulate a counter-argument.
3. Request for the next reviewer to be an ED

specialist. They may not always grant the
request, but it does imply that a non-ED doc
may not fully understand the clinical factors
involved in determining the appropriate course
of treatment.
4. Request an expedited appeal. This will speed
up the process and reduce the risk of financial
loss if additional treatment is not authorized.
5. Believe yourself and believe in the patient. It
will come across in your tone.
a) Make sure they are using ED-specific

criteria if they have it. If they are not, you
can make plenty of arguments as to why
it is not an appropriate measure for ED
treatment.
Page |52
Sample Letters to Use with Insurance Companies

This section provides seven sample letters to use for various circumstances you may encounter that require
you to communicate with insurance companies. These letters were developed and used by families who
encountered these situations. Keep in mind that a cordial, business communication tone is essential as discussed
in Understanding Insurance Issues for Eating Disorders Treatment.
Remember:
Follow up on letters with phone calls and
document with whom youre speaking.
Dont assume one insurance department
knows what the other is doing.
Dont panic! Your current issue or rejection can
be a computer generated glitch.
Copy letters to others relevant to the request.

Also, if you are complimenting someone for the
assistance theyve provided, tell them youd
love to send a copy to their boss to let him/her
know about the great service youve received.
Supply supporting documents.
Get a signed delivery receiptespecially when
time is of the essence.
Sample letters begin on the following page.
Page |53

Sample Letter #1
Request that the copay for the psychiatrist from the patient be changed to a medical copay rate instead of the
higher mental health copay, because the psychiatrist was providing medication management, not psychotherapy.
Outcome
Adjustments can be made so that the family is billed for the medical copay. Remember, the psychiatrist must use
the proper billing code.
Date:
To: Name of Clinical Appeals Staff Person
INS. CO. NAME & ADDRESS
From: YOUR NAME & ADDRESS
Re: PATIENTS NAME
DOB (Date of Birth)
Insurance ID#
Dear [obtain and insert the name of a person to whom youll address the letteravoid sending to a generic title
or To Whom It May Concern];
Thank you for assisting me with my [sons/daughters] medical care. As you can imagine, this process is very
emotionally draining on the entire family. However, the cooperation of the fine staff at [INSURANCE COMPANY
NAME] makes it a little easier.
At this time, I would like to request that [INS. CO.] review the category that [Dr. NAMEs] services have been placed
into. It appears that I am being charged a copay for [his/her] treatment as a mental health service when in reality
[he/she] provides [PATIENT NAME] with pharmacologic management for [his/her] neuro-bio-chemical disorder.
Obviously, this is purely a medical consultation. Please review this issue and kindly make adjustments to past and
future consultations.
Thank you in advance for your cooperation and assistance.
Sincerely,
[YOUR NAME]
Cc: [list the people in the company you are sending copies to]
Page |54

Sample Letter #2
The need to flex hospital days for counseling sessions. Remember, just because you are using outpatient services
does not mean that you cannot take advantage of benefits for a more acute level of care if your child is eligible
for that level of care. The insurance company only knows the information you supply, so be specific and provide
support from the treatment team!
Outcome
10 Hospital days were converted to 40 counseling sessions.
Date:
To: Name of an individual in the Ins. Co. Management Dept
Re: PATIENTS NAME
DOB (Date of Birth)
Insurance ID#
Case #
Dear [insert name]:
This letter is in response to [insurance company names] denial of continued counseling sessions for my [daughter/
son]. I would like this decision to be reconsidered because [insert PATIENT NAME] continues to meet the American
Psychiatric Associations clinical practice guidelines criteria for Residential treatment/Partial hospitalization. [His/
Her] primary care provider, [NAME], supports [his/her] need for this level of care (see attached Sample Letter #3
below provides an example of a physician letter). Therefore, although [he/she] chooses to receive services from
an outpatient team, [he/she] requires an intensive level of support from that team, including ongoing counseling,
to minimally meet [his/her] needs. I request that you correct the records re: [PATIENT NAMEs] level of care to
reflect [his/her] needs and support these needs with continued counseling services, since partial hospitalization/
residential treatment is a benefit [he/she] is eligible for and requires.
I am enclosing a copy of the APA guidelines and have noted [PATIENT NAMES] current status. If you have further
questions you may contact me at: [PHONE#] or [Dr. NAME] at: [PHONE#].
Thank you in advance for your cooperation and prompt attention to this matter.
Sincerely,
[YOUR NAME]
Cc: [Case manager]
[Ins. Co. Medical manager]
Page |55

Sample Letter #3
Letter to a managed care plan to seek reimbursement for services that the patient received when time was insuffi
cient to obtain pre-authorization because of the serious nature of the illness and the need to deal with it urgently.
Remember: you need to research the professionals available through your plan and local support systems. In this
case, after contacting their local association for eating disorders experts, the family that created this letter realized
that no qualified medical experts were in their area to diagnose and make recommendations for their child. Keep
in mind that you need to seek a qualified expert and not a world-famous expert. Make sure you provide very
specific information from your research.
Outcome
Reimbursement was provided for the evaluating/treating psychiatrist visits and medications. Further research and
documentation was required to seek reimbursement for the treatment facility portion.
DATE
To: Get the name of a person to direct a letter to
Re: PATIENTS NAME
DOB (Date of Birth)
Insurance ID#
Case #
Dear [insert name]:
My [son/daughter] has been under treatment for [name the eating disorder and any applicable co-existing
condition] since [month/year]. [He/she] was first seen at the college health clinic at [UNIVERSITY NAME] and then
referred for counseling that was arranged through [INS. CO.]. At the end of the semester I met with my [son/
daughter] and [his/her] therapist to make plans for treatment over the summer. At that time, residential treatment
was advised, which became a serious concern for us. We then sought the opinion of a qualified expert about this
advice. I first spoke to [PATIENT NAMES] primary physician and then contacted the local eating disorders support
group. No qualified expert emerged quickly from the community of our [INS. CO.] network providers. In my
research to identify someone experienced in eating disorder evaluation and treatment, I discovered that [insert
Dr.NAME at HOSPITAL in LOCATION] was the appropriate person to contact to expedite plans for our child. Dr.
[NAME] was willing to see [him/her] immediately, so we made those arrangements.
As you can imagine, this was all very stressful for the entire family. Since continuity of care was imperative, we
went ahead with the process and lost sight of the preapproval needed from [INS. CO.]. I am enclosing the bills we
paid for those initial visits for reimbursement. [PATIENT NAME] was consequently placed in a residential setting in
the [LOCATION] area and continues to see Dr. [NAME] through arrangements made by [INS. CO.].
Also, at the beginning of [his/her] placement, some confusion existed about medications necessary for [PATIENT
NAME] during this difficult/acute care period. At one point payment for one of [his/her] medications was denied
even though the treatment team recommended it, and it was prescribed by [his/her] primary care physician,
Dr. [NAME]. I spoke to a [INS. CO.] employee [insert name] at [PHONE #] to rectify the situation; however, I felt
it was a little too late to meet my timeframe for visiting [PATIENT NAME], so I paid for the Rx myself and want
reimbursement at this time. If you have any questions, please speak to [employee name].
Thank you in advance for your cooperation. Id be happy to answer any further questions and can be reached at:
[PHONE]
Sincerely,
[YOUR NAME]
Page |56

Sample Letter #4
To continue insurance while attending college less than full-time so that student can remain at home for a
semester due the eating disorder. Note: When a student does not register on time at the primary university at
which he/she has been enrolled, insurance is automatically terminated at that time. Automatic termination can
cause an enormous amount of paperwork if not rectified IMMMEDIATELY. The first letter informs the insurance
company of the students current enrollment status in a timely fashion, and the second letter responds to the
abrupt and retroactive termination. Students affected by an eating disorder may be eligible for a medical leave of
absence from college for up to one yearso you may want to inquire about that at the students college.
Outcome
The student was immediately reinstated as a less than full-time student.
DATE
To: NAME OF CONTACT PERSON
Re: PATIENTS NAME
DOB (Date of Birth)
Insurance ID#
Case #
Dear [NAME]:
We spoke the other day regarding my [sons/daughters] enrollment status. I am currently following up on your
instructions and appreciate your assistance in explaining what to do. [Dr. NAME] is sending you a letter that should
arrive very soon about [PATIENT NAMEs] medical status that required [him/her] to reduce the number of classes
[he/she] will be able to take this fall. When [he/she] completes re-enrollment at [UNIVERSITY NAME] (which is not
possible to do until the first day of classes, [DATE]), [he/she] will have the registrars office notify you of her status.
At this time, [NAME] plans to be a part-time student at [UNIVERSITY] for the [DATE] semester and plans to return
to [UNIVERSITY] in [DATE], provided [his/her] disorder stabilizes. If all goes well; [he/she] may be able to graduate
with [his/her] class and complete [his/ her] coursework by the [DATE] in spite of the medical issues. Please feel free
to get answers to any questions regarding these plans from [PATIENT NAMES academic advisor Mr./Ms. NAME],
whom [PATIENT NAME] has given written permission in a signed release to speak to you. This advisor has been
assisting my [son/daughter] with [his/her] academic plans and is aware of [his/her] current medical status. The
advisors phone number and email are: [PHONE #/ email].
Please feel free to contact me at [PHONE #] if you have any questions or need any further information. Thank you
for your assistance.
Sincerely,
[YOUR NAME]
Cc:
Page |57

Sample Letter #5
Follow-up letter to enrollment department after coverage was terminated retroactively to June 1st by the
insurance companys computer.
DATE
To: NAME OF CONTACT PERSON
Re: PATIENTS NAME
DOB (Date of Birth)
Insurance ID#
Case #
Dear [NAME]:
I am sure you can imagine my shock at receiving the attached letter [copy of the letter you received] that my
[son/daughter] received about termination of coverage. [NAME] has been receiving coverage from [INSURANCE
COMPANY] for treatment of serious medical issues since [DATE]. We have received wonderful assistance from
[NAME], Case Manager [PHONE#]; [NAME], Mental Health Clinical Director [PHONE#]; and Dr. [NAME], [INS. CO.]
Medical Director [PHONE #]. I am writing to describe the timeline of events with copies to the people who have
assisted us as noted above.
In [DATE], [ PATIENT NAME] requested a temporary leave of absence from [UNIVERSITY 1 NAME] to study at
[UNIVERSITY 2 NAME] for one year. [He/she] was accepted at [UNIVERSITY 2 NAME] and attended the [DATE]
semester. At the end of the spring semester [PATIENT NAMES] medical issues intensified and [PATIENT NAME]
returned home for the summer. The summer of [YEAR] has been very complicated and a drain on our entire family.
The supportive people noted earlier in this letter made our plight bearable but we were constantly dealing with
one medical issue after another.
At the beginning of August [PATIENT NAME] and the treatment team members began to discuss [PATIENT NAMEs]
needs for the fall semester of [YEAR]. As far as our family was concerned, all options [UNIV. 1, UNIV. 2, & several
local options full and part-time] needed to be up for discussion to meet [patient names] medical needs. We hoped
that with the help of [his/her] medical team we could make appropriate plans in a timely fashion.
During [PATIENT NAMEs] appointments the first two weeks of August, the treatment team agreed that [PATIENT
NAME] should continue to live at home and attend a local university on a part-time basis for the fall semester.
This decision was VERY difficult for [PATIENT NAME] and our family. [PATIENT NAME ]still hopes/plans to return to
[UNIV. 1] in [date] as a full-time student. [He/she] has worked with [his/her] [UNIV. 1] advisor since [date] to work
out a plan that might still allow [him/her] to graduate with [his/her] class even if [he/she] needed to complete
a class or two in the summer of [YEAR]. This decision by [NAME] was difficult but also a major breakthrough/
necessity for [his/her] treatment.
After a workable plan was made, I called the enrollment department at [INS. CO. NAME] to gain information
about the process of notification regarding this change in academic status due to [his/her] current medical needs.
[INS. EMPLOYEE NAME] communicated to me that I needed to have my childs primary care physician write a
letter supporting these plans. This letter is forthcoming as we speak. As soon as [PATIENT NAMEs] fall classes are
finalized on [date] that information will also be sent to you.
Page |58
In summary, [PATIENT NAME] intended to be a full-time student this fall until [his/her] treatment team suggested
otherwise in the early August. At that time I began notifying the insurance company. Please assist us in expediting
this process. I ask that you immediately reinstate [him/her] as a policy member. If [his/her] status is not resolved
immediately it will generate a GREAT DEAL of unnecessary extra work for all parties involved and, quite frankly, Im
not sure that our family can tolerate the useless labor when our energy is so depleted and needed for the medical/
life issues at hand.
I am attaching 1) my previous enrollment notification note; 2) [PATIENT NAMEs] acceptance from [UNIV. 2]; 3) a
copy of [PATIENT NAMES] apartment lease for the year; and 4) [his/her] recent letter to [UNIV. 2] notifying them
that [he/she] will be unable to complete the year as a visiting student for medical reasons. Please call me TODAY at
[PHONE #] to update me on this issue. This is very draining on our family. Thank you for your assistance.
Sincerely,
[YOUR NAME]
Cc: [CASE MANAGER, MENTAL HEALTH CLINICAL DIRECTOR, MEDICAL DIRECTOR]
Page |59

SAMPLE LETTER #6
Letter from doctor describing any medical complications your child has had, the doctors recommendations for
treatment, and the doctors prediction of outcome if this treatment is not received. This is a sample physician
letter that parents can bring to their childs doctor as a template to work from.
DATE
To: [Get the name of a medical director at the insurance company]:
Re: PATIENTS NAME
DOB (Date of Birth)
Insurance ID#
Dear [NAME]:
We are writing this letter to summarize our treatment recommendations for [patient name]. We have been
following [patient name] in our program since [DATE]. During these past [NUMBER years], [patient name] has
had [NUMBER] hospitalizations for medical complications of [insert conditions, e.g., malnutrition, profound
bradycardia, hypothermia, orthostasis]. Each of the patients hospital admissions are listed below [list each and
every one separately]:
Admission Date Discharge Date [condition]
In all, [patient] has spent [NUMBER] days of the past [NUMBER years] in the hospital due to complications of [his/
her] malnutrition.[Patient names] malnutrition is damaging more than [his/her] heart. [His/Her] course has been
complicated by the following medical issues:
List each issue and its medical consequence [e.g., secondary amenorrhea since DATE, which has the
potential to cause irreversible bone damage leading to osteoporosis in his/her early adult life.]
Despite receiving intensive outpatient medical, nutritional and psychiatric treatment, [patient names] medical
condition has continued to deteriorate with [describe symptoms/signs, e.g., consistent weight loss since DATE]
and is currently 83% of [his/her] estimated minimal ideal body weight (the weight where the nutritionist
estimates [he/she] will regain regular menses). White blood cell count and serum protein and albumin levels
have been steadily decreasing as well, because of extraordinarily poor nutritional intake.
Given this history, prior levels of outpatient care that have failed, and [his/her] current grave medical condition,
we recommend that [patient name] urgently receive more intensive psychiatric and nutritional treatment that can
be delivered only in a residential treatment program specializing in eating disorders. We recommend a minimum
60- to 90- day stay in a tiered program that offers: intensive residential and transitional components focusing
on adolescents and young adults with eating disorders (not older patients). [Patient] requires intensive daily
psychiatric, psychologic, and nutritional treatment by therapists well-trained in the treatment of this disease. Such
a tiered program could provide the intensive residential treatment that [he/she] so desperately needs so [he/she]
can show that [he/she] can maintain any progress in a transitional setting. We do not recommend treatment in a
non-eating disorder-specific behavioral treatment center. [Patient]s severe anorexia requires subspecialty-level
care. Examples of such programs would include [name facilities].
Page |60
Anorexia nervosa is a deadly disease with a 10% to 15% mortality rate; 15% to 25% of patients develop a severe
lifelong course. We believe that without intensive treatment in a residential program, [patient names and
condition], and the medical complications that it causes, will continue to worsen causing [him/her] to be at
significant risk of developing lifelong anorexia nervosa or dying of the disease. We understand that in the past,
your case reviewers have denied [patient] this level of care. This is the only appropriate and medically responsible
care plan that we can recommend. We truly believe that to offer a lesser level of care is medically negligent. We
trust that you will share our grave concern for [patients] medical needs and approve the recommended level of
care to assist in [his/her] recovery.
Thank you for your thorough consideration of this matter. Please feel free to contact us with any concerns
regarding [patients] care.
Sincerely,
[PHYSICIAN NAME]
Cc: [YOU]
Page |61

SAMPLE LETTER #7
Discussion with the insurance company about residential placement when the insurance company suggests
that the patient needs to fail at lower levels of care before being eligible for residential treatment. In a telephone
conversation, the parents asked the insurance company to place a note in the patient file indicating the insurance
company was willing to disregard the American Psychiatric Association guidelines and recommendations of the
patients treatment team and take responsibility for the patients life. (SEND BY CERTIFIED MAIL!)
OUTCOME
Shortly thereafter, the parents received a letter authorizing the residential placement.
DATE
To: CEO (by name)
INS. CO. NAME & ADDRESS (use the headquarters)
Re: PATIENTS NAME
DOB (Date of Birth)
Insurance ID#
Case #
Dear (Pres. of INS. CO.):
Residential placement services for eating disorder treatment have been denied for our [son/daughter] against the
recommendations of a qualified team of experts consistent with the American Psychiatric Associations evidencebased clinical practice guidelines. Full documentation of our childs grave medical condition and history and our
attempts to obtain coverage for that care is available from our case manager [name]. At this time, I would like you
to put in writing to me and to my childs case file that [INS. CO.] is taking complete responsibility for my [sons/
daughters] life.
Respectfully,
[YOUR NAME]
Cc: [CASE MANAGER NATIONAL MEDICAL DIRECTOR (get the names for both the medical and behavioral health
divisions)
NATIONAL MEDICAL DIRECTOR Behavioral Health]
Page |62
Other Steps for Loved Ones

One of the major factors insurance companies use to
determine whether to continue paying for the current
level of care is how the individual is responding to
treatment. This can include physical signs, such as
weight, vital signs, and electrolyte levels. It can also
include the providers assessments of the patient,
which rely heavily on what the sufferer discloses during
treatment. Not all sufferers are able and willing to
disclose their internal strugglessuch as hiding food,
exercising in secret, and ongoing purgingduring
treatment, which would indicate a need for ongoing
treatment at the current level of care or even the need
for more intensive treatment.
hospital or residential facility. Although health care

providers cannot disclose information about the patient
without their permission, that doesnt mean you cant
open the doors of communication the other way.
If you see ongoing, worrisome eating disorder
behaviors in your loved one, be sure to document them
and give their providers a written copy. Not only will
this help them receive better care and address issues
the treatment team may not be aware of, it can give
the providers additional ammunition to argue the need
for ongoing care with the insurance companies.
However, loved ones may observe these behaviors

when the eating disorder sufferer is home during the
day or in the evenings, as well as when visiting at a
Page |63
Making Sense of
Neuroscience
Page |64
Appetite
For people with eating disorders, the decision of what
to eat is a complicated snarl of anxiety and guilt. And
its not much less complicated for people without
eating disorders. Our appetitesfor what and how
much we eatare regulated by a complex array of
hormones, hunger, and desire. When these systems
are working properly, everything is great. We eat
what we need and want, more or less. Our weight is
appropriate for our genes and body type. Our diet is
varied and tasty.
As in any complex system, however, things can go
wrong. Research has shown us that eating disorder
sufferers have problems regulating feelings of hunger
and satiety that can perpetuate and perhaps even
contribute to the onset of illness. Scientists have
identified several key hormones and brain processes
that may be malfunctioning in people with eating
disorders. Leptin and ghrelin, discussed below, also
interact with a variety of other hunger and satiety
signals to help keep our bodies fueled properly.
Leptin is a hormone produced by fat cells that
signals satiety. Researchers at Rockefeller University
discovered the leptin gene almost 20 years ago (Zhang
et al., 1994), and researchers soon showed that leptin
is one of the (many) reasons why diets dont work. As
body fat stores go down, so do leptin levels. Lower
leptin levels mean that it takes longer to feel full after
eating, which serves to bring the body back to its
original weight.
Since leptin is a key component of appetite and body
weight regulation, scientists suspected that leptin
might be involved in eating disorders. Researchers
measured leptin levels in 67 women with eating
disorders (21 had anorexia, 32 had bulimia, and 14 had
binge eating disorder), and compared this to 25 healthy
women (Monteleone et al., 2000). As expected, leptin
levels were significantly elevated in the women with
binge eating disorder compared to healthy women, but
they were significantly lowered in women with anorexia
or bulimia.
Normally, high levels of leptin are associated with
lower levels of endocannabinoids, brain chemicals
that, among other things, regulate appetite (DiMarzo
et al., 2001). Low levels of endocannabinoids should
make a person feel less hungry. This isnt the case
in people with binge eating disorder; their elevated
leptin levels are actually associated with high levels of
endocannabinoids, which could help promote further

binge eating (Monteleone et al., 2005a). Its not clear,
at this point, whether these alterations are a cause or a
result of regular binge eating.
When researchers compared leptin levels in women
with anorexia to women who had low weights for
other reasons, they found that leptin was significantly
higher in the women with anorexia. This blunted leptin
response could help explain why people with anorexia
are hyperactive and can continue starving themselves
for long periods of time. They are hungry, yes, but not
as hungry as they should be (Frederich et al., 2002).
In bulimia, leptin levels appeared somewhat lower than
expected, and lower leptin levels were associated with
more frequent binge eating (Jimerson et al., 2000). A
later study found that low leptin levels in women with
bulimia were also associated with more chronic, severe
illness (Monteleone et al., 2002).
Ghrelin is secreted by the stomach and acts opposite to
leptin. Whereas high levels of leptin help trigger satiety,
high levels of ghrelin help trigger hunger. Ghrelin levels
typically rise before a meal and decrease afterwards.
The hormone is thought to work in part by helping
to stimulate the brains reward system to encourage
eating. The links between ghrelin and eating disorders
arent quite as straightforward as those seen with
leptin.
Scientists found that, in women with binge eating
disorder, ghrelin levels were lower than in women with
similar BMIs (Geliebter, Gluck, & Hashim, 2005). Other
researchers have found similar results (Monteleone
et al., 2005b), indicating that decisions about eating
arent dictated just by hunger and fullness, but by other
emotions as well.
When researchers measured ghrelin in women with
bulimia, they found that levels of this hormone didnt
decrease as much as it did in control women. Since
women with bulimia dont feel as full after a meal, they
may be more likely to binge or overeat (Monteleone
et al., 2003). In anorexia, ghrelin levels are elevated,
as expected with someone who is starving. During
the refeeding process, however, ghrelin levels drop
dramatically, which could help explain why many
people with anorexia struggle to put on weight: their
hunger signals arent working properly (Cano et al.,
2012).
Page |65
References
Cano, S. C., Merkestein, M., Skibicka, K. P., Dickson, S. L., &
Adan, R. A. (2012). Role of Ghrelin in the Pathophysiology
of Eating Disorders. CNS drugs, 26(4), 281-296. DOI:
10.2165/11599890-000000000-00000
Di Marzo, V., Goparaju, S. K., Wang, L., Liu, J., Btkai, S., Jrai,
Z., ... & Kunos, G. (2001). Leptin-regulated endocannabinoids
are involved in maintaining food intake. Nature, 410(6830),
822-825. doi:10.1038/35071088
Frederich, R., Hu, S., Raymond, N., & Pomeroy, C. (2002).
Leptin in anorexia nervosa and bulimia nervosa: importance
of assay technique and method of interpretation. Journal of
Laboratory and Clinical Medicine, 139(2), 72-79. doi:10.1067/
mlc.2002.121014
Geliebter, A., Gluck, M. E., & Hashim, S. A. (2005). Plasma
ghrelin concentrations are lower in binge-eating disorder. The
Journal of Nutrition, 135(5), 1326-1330.
Jimerson, D. C., Mantzoros, C., Wolfe, B. E., & Metzger, E. D.
(2000). Decreased serum leptin in bulimia nervosa. Journal of
Clinical Endocrinology & Metabolism, 85(12), 4511-4514. doi:
10.1210/jc.85.12.4511
Monteleone, P., Martiadis, V., Fabrazzo, M., SerritellaL,

C., & Maj, M. (2003). Ghrelin and leptin responses to food
ingestion in bulimia nervosa: implications for binge-eating and
compensatory behaviours. Psychological medicine, 33(08),
1387-1394. doi:10.1017/S0033291703008316
Monteleone, P., Matias, I., Martiadis, V., De Petrocellis,
L., Maj, M., & Di Marzo, V. (2005a). Blood levels of the
endocannabinoid anandamide are increased in anorexia
nervosa and in binge-eating disorder, but not in bulimia
nervosa. Neuropsychopharmacology, 30(6), 1216-1221.
doi:10.1038/sj.npp.1300695
Monteleone, P., Fabrazzo, M., Tortorella, A., Martiadis,
V., Serritella, C., & Maj, M. (2005b). Circulating ghrelin is
decreased in non-obese and obese women with binge eating
disorder as well as in obese non-binge eating women, but not
in patients with bulimia nervosa. Psychoneuroendocrinology,
30(3), 243-250. doi:10.1016/j.psyneuen.2004.07.004
Zhang, Y., Proenca, R., Maffei, M., Barone, M., Leopold, L., &
Friedman, J. M. (1994). Positional cloning of the mouse obese
gene and its human homologue. Nature, 372(6505), 425-432.
doi:10.1038/372425a0
Monteleone, P., Di Lieto, A., Tortorella, A., Longobardi,

N., & Maj, M. (2000). Circulating leptin in patients with
anorexia nervosa, bulimia nervosa or binge-eating disorder:
relationship to body weight, eating patterns, psychopathology
and endocrine changes. Psychiatry Research, 94(2), 121-129.
doi: 10.1016/S0165-1781(00)00144-X
Monteleone, P., Martiadis, V., Colurcio, B., & Maj, M. (2002).
Leptin secretion is related to chronicity and severity of the
illness in bulimia nervosa. Psychosomatic medicine, 64(6), 874879. doi: 10.1097/01.PSY.0000024239.11538.A5
Page |66
Body Image
A common feature in many eating disorders is distorted
body image, and an overemphasis on the importance
of weight and shape to ones value as a person. Our
cultural emphasis on dieting, thin models, and digitally
altered images certainly plays a role. However, if
the body image distortions were only caused by
media factors, nearly everyone would suffer from an
eating disorder. Nor do cultural factors explain the
documented existence of eating disorders in cultures
and time periods without a cultural emphasis on
thinness. New research is showing that individuals
with eating disorders have differences in the way they
perceive their own shape and size that appears to be
strongly influenced by biology.
Everyone has a body image. Researchers define body
image as the way we picture and perceive our bodies
in our minds, and this perception is shaped by broader
cultural factors, our own individual experiences, and
by how our brains perceive the size of our bodies and
how they move through space. Only in more recent
years have scientists begun to tease apart how these
neurological factors can affect the development of
body image in eating disorders.
It appears that several regions of the brain are involved
in this body image distortion. In a neuroimaging study
of women recovered from binge/purge anorexia,
researchers found that higher serotonin receptor
activity in the left parietal cortex was associated
with lower drive for thinness (Bailer et al., 2004). A
separate study also found abnormal activation of the
parietal cortex when individuals with anorexia were
asked to look at pictures of themselves (Wagner et al.,
2003). The parietal cortex helps to create a map of the
body using the sensory information it processes, and
researchers have hypothesized that problems with
creating this body map may at least in part underlie
body image distortions in eating disorders (Titova et
al., 2013). This hypothesis is supported by research
that showed patients currently ill with anorexia had
problems retrieving accurate information about their
body shape that caused them to overestimate their
current body size (Mohr et al., 2010).
These distortions also appear to involve the brains fear
circuitry. Scientists in Germany asked three adolescents
currently hospitalized for anorexia to view pictures
of their own body that had been digitally altered to
appear larger and thus simulate the teens actual body
image. When the teens with anorexia looked at the
digitally altered images of their bodies, the activity

in their fear circuits increased significantly when
compared to the activity when these teens viewed
digitally altered images of healthy teen bodies (Seeger
et al., 2002).
Although more research has been done looking at the
neurobiology of body image in people with anorexia,
it appears that many of the same processes may occur
in people with bulimia. When researchers asked 13
women with anorexia, 16 women with bulimia, and 27
healthy controls to view pictures of their own bodies in
a bikini, the activity in the parietal cortex was similar in
both groups of eating disordered women (Vocks et al.,
2010).
Studies have found that body image dissatisfaction
plays a role in binge eating disorder (Grilo & Masheb,
2005), as does body image distortion (Mussell et al.,
1996); however, no neurobiological studies have been
completed to determine the nature of these body
image issues.
In adolescent girls without eating disorders, scientists
have found that the extent to which a teen girl
believes that her body should conform to the cultural
ideal of extreme thinness (known as thin ideal
internalization) appears to be somewhat heritable
(Suisman et al., 2012). The authors of the study believe
that perfectionism may play a role in this, as highly
perfectionistic people may likely express the need or
desire to have a perfect body. Indeed, independent
studies have found that, in individuals without
eating disorders, people who have higher levels of
perfectionism also experience higher levels of body
dissatisfaction (Wade & Tiggemann, 2013). Its also not
yet clear how thin ideal internalization interacts with
the neurobiological differences discussed above to alter
a persons risk for an eating disorder.
References
Bailer, U. F., Price, J. C., Meltzer, C. C., Mathis, C. A., Frank,
G. K., Weissfeld, L., ... & Kaye, W. H. (2004). Altered 5-HT2A
receptor binding after recovery from bulimia-type anorexia
nervosa: relationships to harm avoidance and drive for
thinness. Neuropsychopharmacology, 29(6), 1143-1155.
doi:10.1038/sj.npp.1300430
Grilo, C. M., & Masheb, R. M. (2005). Correlates of body
image dissatisfaction in treatmentseeking men and women
with binge eating disorder. International Journal of Eating
Disorders, 38(2), 162-166. DOI: 10.1002/eat.20162
Page |67
References (continued)
Mohr, H. M., Zimmermann, J., Rder, C., Lenz, C., Overbeck,
G., & Grabhorn, R. (2010). Separating two components of
body image in anorexia nervosa using fMRI. Psychological
Medicine, 40(9), 1519. DOI: 10.1017/S0033291709991826
Mussell, M. P., Peterson, C. B., Weller, C. L., Crosby, R. D.,
Zwaan, M., & Mitchell, J. E. (1996). Differences in body image
and depression among obese women with and without
binge eating disorder. Obesity Research, 4(5), 431-439. DOI:
10.1002/j.1550-8528.1996.tb00251.x
Seeger, G., Braus, D. F., Ruf, M., Goldberger, U., & Schmidt, M.
H. (2002). Body image distortion reveals amygdala activation
in patients with anorexia nervosaa functional magnetic
resonance imaging study. Neuroscience Letters, 326(1), 25-28.
DOI: 10.1016/S0304-3940(02)00312-9
Suisman, J. L., OConnor, S. M., Sperry, S., Thompson, J.
K., Keel, P. K., Burt, S. A., ... & Klump, K. L. (2012). Genetic
and environmental influences on thinideal internalization.
International Journal of Eating Disorders, 45(8), 942-948. DOI:
10.1002/eat.22056
Titova, O. E., Hjorth, O. C., Schith, H. B., & Brooks, S. J.
(2013). Anorexia nervosa is linked to reduced brain structure
in reward and somatosensory regions: a meta-analysis of
VBM studies. BMC psychiatry, 13(1), 110. doi:10.1186/1471244X-13-110
Vocks, S., Busch, M., Grnemeyer, D., Schulte, D., Herpertz, S.,
& Suchan, B. (2010). Neural correlates of viewing photographs
of ones own body and another womans body in anorexia
and bulimia nervosa: an fMRI study. Journal of psychiatry &
neuroscience: JPN, 35(3), 163. doi: 10.1503/jpn.090048
Wade, T. D., & Tiggemann, M. (2013). The role of
perfectionism in body dissatisfaction. J Eat Disord, 1(2).
doi:10.1186/2050-2974-1-2
Wagner, A., Ruf, M., Braus, D. F., & Schmidt, M. H. (2003).
Neuronal activity changes and body image distortion in
anorexia nervosa. Neuroreport, 14(17), 2193-2197.
Page |68
Neurotransmitters
Although eating disorders result from the interplay of
a variety of cultural and biological factors, the brain
is central to understanding why some people develop
eating disorders, why people stay ill, and how they
can recover. In recent years, scientists have made
tremendous strides in understanding the brain science
of eating disorders.
Based on evidence from hundreds of studies, it
appears that one of the factors that make a person
more likely to develop an eating disorder is how their
brain functions. Researchers have identified specific
neurobiological differences in the brains of people
with anorexia, bulimia, or binge eating disorder. These
differences affect how we eat, as well as things like
mood, anxiety, personality, and decision-making.
This section will introduce you to the basics of eating
disorder neurobiology, and how various neural systems
work together in individuals with eating disorders.
Neurons
Neurons send signals to each other using chemicals
known as neurotransmitters. The type and amount
of neurotransmitters released will tell neighboring
neurons whether to become active or to stay silent.
The body produces an array of neurotransmitters and
their receptors, which are proteins on the surface of the
cell that recognize a specific neurotransmitter and relay
the signal from the outside to the inside of the cell. Small
variations in the shape and number of receptors, as well
as the amount of neurotransmitter producedknown
as polymorphismsexist in the population, which
increase or decrease the amount of neurotransmitter in
the synapse (the small space between a neuron and its
neighbors) and our sensitivity to it. These variations have
been linked to a variety of mental illnesses, including
eating disorders.
For eating disorders, there are two primary neurotransmitters you need to know about: serotonin and dopamine. Each of these neurotransmitters has an influence
in how we think and behave, our personalities, and even
perhaps our risk for developing an eating disorder.
Serotonin
Given that serotonin (sometimes referred to as
5-hydroxytryptophan) helps control everything from
memory and learning to sleep, mood, and appetite,
researchers quickly began to look for potential

relationships between polymorphisms in serotonin
receptor genes and eating disorders.
A variety of studies have found alterations in the
serotonin system in individuals currently ill with
anorexia nervosa and those recovered from the
disorder. Researchers found that people who are
currently suffering from anorexia have significantly
lower levels of serotonin metabolites in their cerebro
spinal fluid than individuals without an eating disorder.
This is likely a sign of starvation, since the body
synthesizes serotonin from the food we eat. After
long-term recovery from anorexia, however, individuals
have significantly elevated serotonin levels (Kaye et al.,
1991). In this study, the researchers found that higher
levels of serotonin correspond with levels of anxiety
and obsessive behavior. Geneticists have also found
that individuals with anorexia are slightly more likely
to carry a particular variant of the 5HT2A serotonin
receptor, which is thought to increase the amount of
serotonin in the brain during the non-starved state
(Gorwood et al., 2002).
In an article published in 2009 in Nature Neuroscience,
leading eating disorder researcher Walter Kaye
hypothesizes that starvation actually makes people
with anorexia feel better by decreasing the serotonin
in their brains (Kaye, Fudge, & Paulus, 2009). As they
continue to starve themselves, however, the brain
responds by increasing the number of serotonin
receptors to more efficiently utilize the remaining
serotonin. So in order to keep feeling better, the
person needs to starve themselves further, creating the
illnesss vicious cycle. When someone with anorexia
starts eating again, however, serotonin levels spike,
causing extreme anxiety and emotional chaos, which
makes recovery difficult without adequate support.
Individuals with bulimia also have dysfunctions in
their serotonin circuitry. Those with bulimia, however,
appear to have somewhat different alterations than
those with anorexia. When going without food for
longer periods of time (such as during sleep), those
with bulimia had a larger drop in serotonin levels than
women without eating disorders, which led to binge
eating and increased irritability (Steiger et al., 2001).
Researchers also found that women with bulimia who
carried a particular variant of a serotonin receptor
were also significantly more impulsive (Bruce et al.,
2005). Abnormalities in the serotonin system were
also found to persist after recovery, hinting that these
Page |69
differences may have been present before the onset of

the disorder (Kaye et al., 2001).
Serotonin alterations in binge eating disorder appear
fairly similar to those found in bulimia, although the
research is more limited in this area. Researchers
generally believe that individuals with BED also suffer
from chronically low serotonin levels, which is thought
to contribute to binge eating in an attempt to relieve
the depressed mood caused (in part) by this low
serotonin (Haedt-Matt & Keel, 2011). Genetics studies
have supported this idea, as variants in a serotonin
transporter gene were associated with increased binge
eating severity in the general population (Akkermann
et al., 2010). Further studies found an association
between impulsivity and strict dieting with serotonin
receptor genes and binge eating in young women
(Racine et al., 2009).
Dopamine
Dopamine is commonly thought of as the pleasure
chemical, due to its links with rewarding behaviors
and drugs of abuse. Although dopamine is involved in
reward-motivated behavior (such as studying to get
good grades, or going to work early to get a raise), it
also helps regulate movement, memory, hormones
and pregnancy, and sensory processing (Beaulieu &
Gainetdinov, 2011). Like serotonin, the overlap of
processes controlled by dopamine and eating disorderrelated symptoms caused researchers to investigate
potential associations.
In anorexia, the leading hypothesis is that the disorder
is associated with an over-production of dopamine,
leading to anxiety (Bailer et al., 2012a), harm avoidance
(Bailer et al., 2012b), hyperactivity and the ability to go
without pleasurable things like food (Kontis & Theochari,
2012). Research has shown that bulimia is associated
with lower levels of both dopamine and certain of
its receptors, and that binge eating is significantly
associated with dopamine release in certain parts of
the brain (Broft et al., 2012). Binge eating disorder
has been linked to a hyper-responsiveness to rewards
such as food, which makes eating more rewarding and
pleasurable than in people without this disorder (Davis
et al., 2012) and leads to a continuation of compulsive
overeating (Bello & Hajnal, 2010).
References
Akkermann, K., Nordquist, N., Oreland, L., & Harro, J. (2010).
Serotonin transporter gene promoter polymorphism affects
the severity of binge eating in general population. Progress in
Neuro-Psychopharmacology and Biological Psychiatry, 34(1),
111-114. doi: 10.1016/j.pnpbp.2009.10.008
Bailer, U. F., Narendran, R., Frankle, W. G., Himes, M. L.,
Duvvuri, V., Mathis, C. A., & Kaye, W. H. (2012). Amphetamine
induced dopamine release increases anxiety in individuals
recovered from anorexia nervosa. International Journal of
Eating Disorders, 45(2), 263-271. DOI: 10.1002/eat.20937
Bailer, U. F., Frank, G. K., Price, J. C., Meltzer, C. C., Becker, C.,
Mathis, C. A., ... & Kaye, W. H. (2012b). Interaction between
serotonin transporter and dopamine D2/D3 receptor
radioligand measures is associated with harm avoidant
symptoms in anorexia and bulimia nervosa. Psychiatry Research:
Neuroimaging. doi:10.1016/j.pscychresns.2012.06.010
Bello, N. T., & Hajnal, A. (2010). Dopamine and binge eating
behaviors. Pharmacology Biochemistry and behavior, 97(1),
25-33. doi: 10.1016/j.pbb.2010.04.016
Beaulieu, J. M., & Gainetdinov, R. R. (2011). The physiology,
signaling, and pharmacology of dopamine receptors.
Pharmacological reviews, 63(1), 182-217. doi: 10.1124/
pr.110.002642
Broft, A., Shingleton, R., Kaufman, J., Liu, F., Kumar, D.,
Slifstein, M., ... & Walsh, B. T. (2012). Striatal dopamine in
bulimia nervosa: A pet imaging study. International Journal of
Eating Disorders, 45(5), 648-656. DOI: 10.1002/eat.20984
Bruce, K. R., Steiger, H., Joober, R., Kin, N. M. K., Israel,
M., & Young, S. N. (2005). Association of the promoter
polymorphism 1438G/A of the 5HT2A receptor gene with
behavioral impulsiveness and serotonin function in women
with bulimia nervosa. American Journal of Medical Genetics
Part B: Neuropsychiatric Genetics, 137(1), 40-44.
Davis, C., Levitan, R. D., Yilmaz, Z., Kaplan, A. S., Carter, J. C., &
Kennedy, J. L. (2012). Binge eating disorder and the dopamine
D2 receptor: Genotypes and sub-phenotypes. Progress in
Neuro-Psychopharmacology and Biological Psychiatry, 38(2),
328-335. doi: 10.1016/j.pnpbp.2012.05.002
Kontis, D., & Theochari, E. (2012). Dopamine in anorexia
nervosa: a systematic review. Behavioural Pharmacology, 23(5
and 6), 496-515. doi: 10.1097/FBP.0b013e328357e115
Haedt-Matt, A. A., & Keel, P. K. (2011). Revisiting the affect
regulation model of binge eating: A meta-analysis of studies
using ecological momentary assessment. Psychological
bulletin, 137(4), 660. doi: 10.1037/a0023660
You can read more about the effects of dopamine in

the section on Reward.
Page |70
References (continued)
Kaye, W. H., Gwirtsman, H. E., George, D. T., & Ebert, M. H.
(1991). Altered serotonin activity in anorexia nervosa after
long-term weight restoration: does elevated cerebrospinal
fluid 5-hydroxyindoleacetic acid level correlate with rigid and
obsessive behavior? Archives of General Psychiatry, 48(6), 556.
doi: 10.1001/archpsyc.1991.01810300068010
Kaye, W. H., Frank, G. K., Meltzer, C. C., Price, J. C., McConaha,
C. W., Crossan, P. J., ... & Rhodes, L. (2001). Altered serotonin
2A receptor activity in women who have recovered from
bulimia nervosa. American Journal of Psychiatry, 158(7), 11521155. doi:10.1176/appi.ajp.158.7.1152
Kaye, W. H., Fudge, J. L., & Paulus, M. (2009). New insights
into symptoms and neurocircuit function of anorexia nervosa.
Nature Reviews Neuroscience, 10(8), 573-584. doi:10.1038/
nrn2682
Gorwood, P., Ades, J., Bellodi, L., Cellini, E., Collier, D. A.,
Di Bella, D., ... & Treasure, J. (2002). The 5-HT2A-1438G/A
polymorphism in anorexia nervosa: A combined analysis of
316 trios from six European centres. Molecular psychiatry,
7(1), 90-94. doi: 10.1038/sj/mp/4000938
Racine, S. E., Culbert, K. M., Larson, C. L., & Klump, K. L.
(2009). The possible influence of impulsivity and dietary
restraint on associations between serotonin genes and binge
eating. Journal of psychiatric research, 43(16), 1278-1286. doi:
10.1016/j.jpsychires.2009.05.002
Steiger, H., Young, S. N., Ng Ying Kin, N. M. K., Koerner,
N., Israel, M., Lageix, P., & Paris, J. (2001). Implications of
impulsive and affective symptoms for serotonin function in
bulimia nervosa. Psychological Medicine, 31(01), 85-95.
Page |71
Reward
In eating disorders, scientists have identified problems
not only with the physical sensations of hunger and
fullness, but also with how rewarding food is. If an
animal doesnt eat enough, it will die, so necessities
like eating are generally quite pleasurable to ensure
that we stay alive. This pleasure helps reinforce the
behaviors, thoughts, and memories that lead to
eating. Alternately, the brain usually perceives hunger
as being uncomfortable to motivate us to go eat
something. Research has shown us that the brains
reward pathways are altered in individuals with eating
disorders, making them more or less able to perceive
and respond to pleasurable things.
Normally, when we are hungry, food is more rewarding
than when we are full (Bragulat et al., 2010), as
evidenced by the increased release of dopamine in the
nucleus accumbens, which is known to play a role in
pleasure, reward, addiction and fear (Avena, Rada, &
Hoebel, 2008). Given that food restriction frequently
accompanies binge eating behavior (Stice et al., 2000),
the binge becomes even more rewarding in these
individuals than the normal satiation of hunger. The
post-binge guilt leads to further food restriction, which
serves to maintain the high reward of binge eating
(Carr, 2011).
Neuroimaging studies in women with bulimia revealed
that their brains reward pathways are significantly
more active than in healthy controls when they viewed
pictures of food (Brooks et al., 2011). Women with the
binge/purge type of anorexia also showed significantly
higher reward sensitivity (Harrison et al., 2010).
Despite increased awareness and diagnosis of binge
eating in males, the disorder is still significantly more
common in females. Some researchers believe that
female sex hormones may help increase reward
sensitivity (Klump et al., 2013). Scientists are currently
testing this idea.
In bulimia, purging appears to be rewarding as well.
One study found a significant association between
higher reward sensitivity and frequency of purging in
women with bulimia (Farmer, Nash, & Field, 2001). One
potential explanation for this is that purging decreases
the amount of acetylcholine in the brain, high levels
of which have been found to be unpleasant (Avena &
Bocarsly, 2012).
This altered reward system in individuals who binge

eat is evident in areas besides food. Studies have found
that high school students who reported regular binge
eating were much more likely to report use of drugs,
alcohol, or tobacco than non-binge eaters. Those
students who also engaged in compensatory behaviors
like fasting or purging were most likely to use these
substances (Ross & Ivis, 1999).
In anorexia, a large number of studies have instead
found significantly decreased reward sensitivity, as well
as an over-response to punishment (Harrison et al.,
2010). Neuroimaging studies also revealed unusually
high levels of cognitive processing when individuals
with anorexia viewed images of food (Cowdrey et al.,
2011). Because food is less rewarding and appears
to be associated with fear and punishment, people
with anorexia tend to place a higher emphasis on the
long-term goal of weight loss and maintaining anorexic
behaviors rather than foods more immediate rewards
(Kaye et al., 2013). They also tend to report high levels
of ascetic behaviors (Keating et al., 2012).
These differences in reward processing across the
eating disorder spectrum appear to persist after
recovery (Wagner et al., 2010; Wagner et al., 2007).
Because of this, some researchers believe that these
results may indicate that these traits exist before
disease onset and are corroborated with reports of
childhood behaviors (Anderluh et al., 2003). Still, it
also remains possible that these post-recovery traits
are scars from the illness rather than pre-illness risk
factors.
In some religious and cultural traditions, the denial of
pleasure is typically seen as a good thing. Thus it may
seem that individuals with anorexia have a better
way of managing reward. This isnt true. When youre
truly physically hungry, its good to focus on the
immediate rewards of eating. Difficulties in shifting
focus from the potential benefits of long-term goals
to the more immediate benefits of feeding a starving
body and pursuing recovery can keep people stuck in
anorexia nervosa for years.
References:
Anderluh, M. B., Tchanturia, K., Rabe-Hesketh, S., & Treasure,
J. (2003). Childhood obsessive-compulsive personality traits in
adult women with eating disorders: defining a broader eating
disorder phenotype. American Journal of Psychiatry, 160(2),
242-247. doi:10.1176/appi.ajp.160.2.242
Page |72
Avena, N. M., Rada, P., & Hoebel, B. G. (2008). Evidence

for sugar addiction: behavioral and neurochemical effects
of intermittent, excessive sugar intake. Neuroscience
& Biobehavioral Reviews, 32(1), 20-39. doi: 10.1016/j.
neubiorev.2007.04.019
Avena, N. M., & Bocarsly, M. E. (2012). Dysregulation of
brain reward systems in eating disorders: neurochemical
information from animal models of binge eating, bulimia
nervosa, and anorexia nervosa. Neuropharmacology, 63(1),
87-96. DOI: 10.1016/j.neuropharm.2011.11.010
Bragulat, V., Dzemidzic, M., Bruno, C., Cox, C. A., Talavage, T.,
Considine, R. V., & Kareken, D. A. (2010). FoodRelated Odor
Probes of Brain Reward Circuits During Hunger: A Pilot fMRI
Study. Obesity, 18(8), 1566-1571. DOI: 10.1038/oby.2010.57
Brooks, S. J., Owen, G. O., Uher, R., Friederich, H. C.,
Giampietro, V., Brammer, M., ... & Campbell, I. C. (2011).
Differential neural responses to food images in women with
bulimia versus anorexia nervosa. PLoS One, 6(7), e22259.
doi:10.1371/journal.pone.0022259
Carr, K. D. (2011). Food scarcity, neuroadaptations, and the
pathogenic potential of dieting in an unnatural ecology: binge
eating and drug abuse. Physiology & behavior, 104(1), 162-167.
DOI: 10.1016/j.physbeh.2011.04.023
Cowdrey, F. A., Park, R. J., Harmer, C. J., & McCabe, C. (2011).
Increased neural processing of rewarding and aversive food
stimuli in recovered anorexia nervosa. Biological psychiatry,
70(8), 736-743. DOI: 10.1016/j.biopsych.2011.05.028
Farmer, R. F., Nash, H. M., & Field, C. E. (2001). Disordered
eating behaviors and reward sensitivity. Journal of behavior
therapy and experimental psychiatry, 32(4), 211-219. DOI:
10.1016/S0005-7916(01)00036-2
Kaye, W. H., Wierenga, C. E., Bailer, U. F., Simmons, A. N.,

& Bischoff-Grethe, A. (2013). Nothing tastes as good as
skinny feels: the neurobiology of anorexia nervosa. Trends in
neurosciences, 36(2), 110-120. DOI: 10.1016/j.tins.2013.01.003
Keating, C., Tilbrook, A. J., Rossell, S. L., Enticott, P. G., &
Fitzgerald, P. B. (2012). Reward processing in anorexia
nervosa. Neuropsychologia, 50(5), 567-575. DOI: 10.1016/j.
neuropsychologia.2012.01.036
Klump, K. L., Racine, S., Hildebrandt, B., & Sisk, C. L. (2013).
Sex differences in binge eating patterns in male and female
adult rats. International Journal of Eating Disorders. DOI:
10.1002/eat.22139
Ross, H. E., & Ivis, F. (1999). Binge eating and substance use
among male and female adolescents. International Journal
of Eating Disorders, 26(3), 245-260. DOI: 10.1002/(SICI)1098108X(199911)26:3<245::AID-EAT2>3.0.CO;2-R
Stice, E., Akutagawa, D., Gaggar, A., & Agras, W. S.
(2000). Negative affect moderates the relation between
dieting and binge eating. International Journal of Eating
Disorders, 27(2), 218-229. DOI: 10.1002/(SICI)1098108X(200003)27:2<218::AID-EAT10>3.0.CO;2-1
Wagner, A., Aizenstein, H., Venkatraman, V., Fudge, J., May,
J., Mazurkewicz, L., ... & Kaye, W. (2007). Altered reward
processing in women recovered from anorexia nervosa.
American Journal of Psychiatry, 164(12), 1842-1849.
doi:10.1176/appi.ajp.2007.07040575
Wagner, A., Aizenstein, H., Venkatraman, V. K., Bischoff
Grethe, A., Fudge, J., May, J. C., ... & Kaye, W. H. (2010).
Altered striatal response to reward in bulimia nervosa after
recovery. International Journal of Eating Disorders, 43(4), 289294. DOI: 10.1002/eat.20699
Harrison, A., OBrien, N., Lopez, C., & Treasure, J. (2010).

Sensitivity to reward and punishment in eating disorders.
Psychiatry Research, 177(1), 1-11. DOI: 10.1016/j.
psychres.2009.06.010
Page |73
Temperament and Personality

Our personalities are molded by both the genes we
inherit and our life experiences. Psychologists have been
trying for decades to identify the different aspects of
personality or temperament that help make us tick.
Over the years, scientists have found distinct personality
traits in individuals with eating disorders. They appear
relatively specific to each disorder and can distinguish
eating disorder sufferers from healthy people.
Some studies have associated aspects of these
personality traits with alterations in serotonin and
dopamine signaling.
Anorexia Nervosa
People who suffer from anorexia nervosa tend to
have high levels of harm avoidance, a personality trait
characterized by worrying, pessimism, and shyness, and
low levels of novelty seeking, which includes impulsivity
and preferring new or novel things (Fassino et al.,
2002). The different subtypes of anorexia have slightly
different personality traits, with the binge/purge
subtype showing slightly higher levels of impulsivity
and novelty-seeking (Bulik et al., 1995). The restricting
subtype had higher levels of persistence (Klump et al.,
2000). Researchers have linked higher levels of harm
avoidance with higher levels of serotonin in the brain
(Cloninger, 1985), and scientists have linked harm
avoidance with specific alterations in the serotonin
system in women recovered from anorexia (Bailer et
al., 2005).
A study measuring slightly different facets of personality
found that women with either the restricting or
binge/purge subtype of anorexia had higher levels of
neuroticism (characterized by depression, anxiety,
worry, and moodiness) than controls, and that women
with restricting anorexia scored higher on measures of
agreeableness and conscientiousness than those with
the binge/purge type (Bollen & Wojciechowski, 2004).
Bulimia Nervosa
Individuals with bulimia nervosa have high levels of
harm avoidance like anorexia sufferers, but instead its
paired with high levels of novelty seeking (Fassino et
al., 2002). This study found that those with the binge/
purge subtype of anorexia show traits that are midway
between restricting anorexia and bulimia. Other
research has found high levels of impulsivity, emotion
dysregulation, and anxiety in women with bulimia, and

greater impulsivity was associated with more frequent
purging behaviors (Brown, Haedt-Matt, & Keel, 2011).
Scientists found that people who have trouble
regulating the amount of dopamine in their brains have
higher levels of novelty-seeking (Zald et al., 2008), and
that this also occurs in women with bulimia (Groleau et
al., 2012).
Anorexia and bulimia

Although some personality traits are specific to each
eating disorder diagnosis, other traits are more general
and appear to be shared by many or most individuals
with eating disorders. Researchers at Kings College
London identified a set of five obsessive-compulsive
personality traits (perfectionism, inflexibility, rule
driven, drive-for-order and symmetry, excessive doubt
and cautiousness) and found that women with anorexia
and bulimia were significantly more likely to have
shown signs of these in childhood (they were almost
never seen in healthy controls). Whats more, the
presence of each of these traits increased a persons
odds of developing an eating disorder by seven. A
person who had all five of these traits is thirty-five
times more likely to develop an eating disorder than
someone who shows none of these traits (Anderluh et
al., 2003).
Separately from other obsessive-compulsive traits,
individuals with eating disorders show high levels of
perfectionism, especially a type known as self-oriented
perfectionism, in which a person has unreasonably high
standards for themselves but not others. Researchers
found equally high levels of perfectionism in women
with either anorexia or bulimia in two separate studies
(Halmi et al., 2005; Bulik et al., 2003).
Binge Eating Disorder

Personality traits are less well-defined in binge eating
disorder than in anorexia or bulimia. Preliminary
research in Comprehensive Psychology found that
people with binge eating disorder had higher levels of
harm avoidance and novelty seeking and lower levels
of self-directedness than healthy controls (Grucza,
Przybeck, & Cloninger, 2007).
Page |74
References:
Anderluh, M. B., Tchanturia, K., Rabe-Hesketh, S., & Treasure,
J. (2003). Childhood obsessive-compulsive personality traits in
adult women with eating disorders: defining a broader eating
disorder phenotype. American Journal of Psychiatry, 160(2),
242-247. doi:10.1176/appi.ajp.160.2.242
Groleau, P., Steiger, H., Joober, R., Bruce, K. R., Israel, M.,
Badawi, G., ... & Sycz, L. (2012). Dopamine-system genes,
childhood abuse, and clinical manifestations in women with
Bulimia-spectrum Disorders. Journal of psychiatric research,
46(9), 1139-1145. doi: 10.1016/j.jpsychires.2012.05.018
Bailer, U. F., Frank, G. K., Henry, S. E., Price, J. C., Meltzer, C. C.,
Weissfeld, L., ... & Kaye, W. H. (2005). Altered brain serotonin
5-HT1A receptor binding after recovery from anorexia
nervosa measured by positron emission tomography and
[carbonyl11C] WAY-100635. Archives of general psychiatry,
62(9), 1032. doi:10.1001/archpsyc.62.9.1032.
Grucza, R. A., Przybeck, T. R., & Cloninger, C. R. (2007).

Prevalence and correlates of binge eating disorder in a
community sample. Comprehensive psychiatry, 48(2), 124-131.
doi: 10.1016/j.comppsych.2006.08.002
Bollen, E., & Wojciechowski, F. L. (2004). Anorexia nervosa

subtypes and the big five personality factors. European Eating
Disorders Review, 12(2), 117-121. DOI: 10.1002/erv.551
Brown, T. A., HaedtMatt, A. A., & Keel, P. K. (2011).
Personality pathology in purging disorder and bulimia
nervosa. International Journal of Eating Disorders, 44(8), 735740. DOI: 10.1002/eat.20904
Bulik, C. M., Sullivan, P. F., Weltzin, T. E., & Kaye,
W. H. (1995). Temperament in eating disorders.
International Journal of Eating Disorders, 17(3), 251261. DOI: 10.1002/1098-108X(199504)17:3<251::AIDEAT2260170306>3.0.CO;2-V
Bulik, C. M., Tozzi, F., Anderson, C., Mazzeo, S. E., Aggen, S.,
& Sullivan, P. F. (2003). The relation between eating disorders
and components of perfectionism. American Journal of
Psychiatry, 160(2), 366-368. doi:10.1176/appi.ajp.160.2.366
Halmi, K. A., Tozzi, F., Thornton, L. M., Crow, S., Fichter, M.

M., Kaplan, A. S., ... & Bulik, C. M. (2005). The relation among
perfectionism, obsessivecompulsive personality disorder
and obsessivecompulsive disorder in individuals with eating
disorders. International Journal of Eating Disorders, 38(4), 371374. DOI: 10.1002/eat.20190
Klump, K. L., Bulik, C. M., Pollice, C., Halmi, K. A., Fichter, M.
M., Berrettini, W. H., ... & Kaye, W. H. (2000). Temperament
and character in women with anorexia nervosa. The Journal of
nervous and mental disease, 188(9), 559-567.
Zald, D. H., Cowan, R. L., Riccardi, P., Baldwin, R. M., Ansari,
M. S., Li, R., ... & Kessler, R. M. (2008). Midbrain dopamine
receptor availability is inversely associated with noveltyseeking traits in humans. The Journal of Neuroscience, 28(53),
14372-14378. doi: 10.1523/JNEUROSCI.2423-08.2008
Fassino, S., AbbateDaga, G., Amianto, F., Leombruni,

P., Boggio, S., & Rovera, G. G. (2002). Temperament and
character profile of eating disorders: a controlled study with
the Temperament and Character Inventory. International
Journal of Eating Disorders, 32(4), 412-425. DOI: 10.1002/
eat.10099
Page |75
NEDA Headquarters
165 West 46th Street, Suite 402
New York, NY 10036
212-575-6200
Toll-free Information and
Referral Helpline: 800-931-2237
Helpline hours are
9:00am to 9:00pm Monday to Thursday (Eastern Time)
9:00am to 5:00pm Friday (Eastern Time)
Website: www.NationalEatingDisorders.org

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NEDA TOOLKIT for Parents

The NEDA Educational Toolkits Story...................................................... 3

About Eating Disorders............................................................................... 5

Supporting a Loved One........................................................................... 16

Making Sense of Neuroscience .............................................................. 64

NEDA TOOLKIT for Parents

The NEDA Educational Toolkits Story

Of course, no toolkit, no matter how thorough, could

Helping your loved one recover from an eating disorder

Our goal is to maintain the usefulness of the toolkits

The NEDA Parent Toolkit was created to provide some

A Brief History of the Toolkits

NEDA TOOLKIT for Parents

The first toolkits were created with the assistance

We are currently seeking funding for the ongoing

With the continuing advances in eating disorder

NEDA TOOLKIT for Parents

NEDA TOOLKIT for Parents

Eating Disorder Myths

Eating disorders are a choice. I just need to

Doesnt everyone have an eating disorder

Eating disorders are a choice.

environmental trigger that has been linked to increased

I need to figure out what I did to cause my

Its just an eating disorder. That cant be a big

NEDA TOOLKIT for Parents

Since I dont see my loved one engaging in

My loved one isnt ready to recover from their

As a parent, theres not much I can do to help

My family member wont recover until they

If my loved one insists they are fine, I should

NEDA TOOLKIT for Parents

As long as someone isnt emaciated, they are

The main eating disorder symptom I have to

Eating disorder behaviors only focus on food.

depression and anxiety, as the disorder progresses, the

My loved one doesnt claim to feel fat. Can

Since eating disorders are linked to biology,

I have a son. I dont have to worry about eating

NEDA TOOLKIT for Parents

My son has bulimia, so he wont develop

Eating disorders can develop or re-emerge at any age.

Many with eating disorders will suffer from more than

Now that my loved one is no longer a teenager,

Im not worried about my friend because

Purging only involves self-induced vomiting.

Once my daughter with anorexia gains weight,

NEDA TOOLKIT for Parents

Risk Factors for Eating Disorders

Psychological Risk Factors

Sociocultural Risk Factors

Biological Risk Factors

Having a close family member with an eating

Cultural promotion of the thin ideal

NEDA TOOLKIT for Parents

Emotional and Behavioral Signs of an Eating Disorder

Obessive interest in cooking shows on

NEDA TOOLKIT for Parents