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Puzzling Symptoms

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EDITOR IN CHIEF Walter H Kaye MD Director Eating Disorders Program Professor UCSD Department of Psychiatry PRINT EDITOR Laura Collins Lyster Mensh MS F E A S T Executive Director EDITORS Kelly L Klump PhD Professor and Co Director of the Michigan State University Twin Registry Department of Psychology Michigan State University Richard E Kreipe MD FAAP FSAM FAED Director of the Child and Adolescent Eating Disorder Program University of Rochester Medical Center School of Medicine and Dentistry Dr Sloane Madden MBBS Hons FRANZCP CAPcert FAED Child and Adolescent Psychiatrist Co Director Eating Disorder Service Head of Department Psychological Medicine The Children s Hospital at Westmead James E Mitchell MD President and Scientific Director Professor and Chairman Department of Neuroscience University of North Dakota School of Medicine and Health Sciences University of North Dakota Janet Treasure PhD MD Kings College London South London and Maudsley NHS Trust CHAIR Mary Beth Krohel F E A S T Advisory Panel DESIGNER Liana Mensh FEAST ED org 1

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PUZZLING SYMPTOMS EATING DISORDERS AND THE BRAIN OUR LOVED ONE HAS AN EATING DISORDER WHAT DOES THIS HAVE TO DO WITH THE BRAIN Although people with eating disorders struggle to eat normally this is only a part of the problem This is a disorder that affects thinking mood behavior and relationships We now believe that part of the problem has to do with how our brains process information about the environment and the body CAN THIS PROBLEM BE FIXED Yes With appropriate professional and family assistance these processing problems can be addressed and improved even normalized The brain is remarkably good at learning and developing in response to a supportive environment skills training psychological therapy and good physical health Moreover many of the traits that make a person vulnerable to an eating disorder are very useful and helpful to that person in recovery and maintaining health WHAT IS WRONG WITH THE BRAIN WHEN SOMEONE HAS AN EATING DISORDER Our knowledge is evolving as we learn more about brain function and development Often a young person has certain traits since early childhood that had nothing to do with food or eating that are early signs Looking back most families will remember that the patient had one or more of the following traits even as a young child anxious sensitive obsessive perfectionist impulsive difficult to soothe These personality traits may indicate differences in brain function that put young people at special risk of developing eating disorders There may also be differences in how certain young people s brains do not receive enough nourishment Unfortunately for these individuals if they stop eating enough for their growth needs or activity level their restricted eating can lead to dramatic changes in the brain Once started it can be difficult for the young person to get back to normal without help Because of the unique way the person s brain and body responds to limited nutrition the longer they are malnourished the harder it becomes to eat normally again For some young people a cycle of delaying meals over eating and purging also sets in FEAST ED org 2

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Researchers do not yet have all the answers but it is believed that eating disorders involve disturbances in the pathways of the brain There may be several ways for things to malfunction but we know that pathways involved are those that manage mood emotions reward memory fear and attention Adolescence is a time of dramatic physical emotional social change and growth towards becoming independent For those who have problems with rigid thinking or impulse control this time of transition is particularly challenging This can make adolescence a period of vulnerability where normal brain development can be disrupted This vulnerability makes it all the more urgent that eating disorder behaviors and thinking be addressed as early as possible to prevent changes to the brain that are hard to reverse and that can have life long effects on the individual s thinking feelings and behavior HOW DO WE KNOW ALL THIS Recent work using brain imaging cognitive testing and studies of the brain nerve cell functioning has harnessed new technology to begin to identify some of the key brain mechanisms pathways and chemical signals neurotrans mitters underlying eating disorders While individual pathways to the development of eating disorder are many and may vary from person to person the key similarities in thoughts and behavior seen in eating disorder patients seem to indicate similar brain disturbances WHY DOESN T MY CHILD UNDERSTAND THAT THIS IS UNHEALTHY It is so important for families to know that their loved one is in an altered state even when they may seem otherwise quite bright and rational The brain is a complex network of systems and one system can be malfunctioning without affecting the others People with eating disorders often manage to get excellent grades in school and perform well in jobs It is not uncommon for patients to argue forcefully about their reasons for their behaviors even believing they do not need to eat gain weight or engage in treatment This lack of insight often gets better with treatment PATHWAYS INVOLVED ARE THOSE THAT MANAGE MOOD EMOTIONS REWARD MEMORY FEAR AND ATTENTION FEAST ED org 3

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WHY DO PATIENTS BELIEVE THEY ARE OVERWEIGHT WHEN THEY ARE NOT The sense of feeling fat is perhaps the most puzzling eating disorder symptom and remains poorly understood While sociocultural in uences are thought to play a role these body image symptoms are so persistent even in very underweight individuals with anorexia nervosa this raises the question of whether there is a biological cause How big we feel not only depends on our physical senses but also on our beliefs memories and emotions It is possible that this information may not be being processed accurately by the brain In fact some recent imaging work tends to show altered function of the parietal and related regions of the brain which are known to regulate body perception Recent work on how eating disorder patients sense temperature and their own heartbeat also indicate problems in self perception of the body that may play a role Still relatively little research has investigated possible biological contributions to body image in those with ED so this remains an area with more questions than answers HOW DO YOU FIX THE BRAIN PROBLEMS IN EATING DISORDERS The brain is constantly learning and changing Restoring healthy eating and weight along with psychotherapy skills building and a supportive environment can help eating disorder symptoms improve or go away While many underlying traits present since childhood such as perfectionism or anxiety may still exist after recovery they are often manageable or respond to specific psychotherapy or drug treatments In some cases especially in individuals with bulimia nervosa medication can assist in recovery The good news is that the majority of eating disorder patients even quite severe cases can recover and go on to lead a healthy productive life The earlier the intervention the higher the chance of success but there is always hope for successful recovery FEAST ED org 4

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THE EARLIER THE INTERVENTION THE HIGHER THE CHANCE OF SUCCESS BUT THERE IS ALWAYS HOPE FOR SUCCESSFUL RECOVERY THERE ARE MORE THAN ONE KIND OF EATING DISORDER ARE THERE DIFFERENT BRAIN PROBLEMS INVOLVED This is a question that is currently under debate We know there is a relation ship between the different eating disorders because of the high rates of people who cross over to other eating disorders over time While it is likely that similar regions of the brain are involved in all eating disorders it is also likely that different mechanisms and pathways are involved Research is still in the early stages of understanding the connections among the different disorders At this time we know more about changes in the brain in anorexia nervosa than the other eating disorders WHAT PARTS OF THE BRAIN ARE INVOLVED There are two pathways of particular interest especially in anorexia nervosa These are the limbic pathway and the cognitive pathway Both affect appetite and emotion and thinking The limbic pathway includes several areas of the brain including the amygdala insula ventral striatum and ventral regions of the anterior cingulate cortex ACC and orbital frontal cortex OFC these areas seem to help people see what is important and rewarding and then how to respond The cognitive pathway is involved with deciding what to pay attention to how to plan what to avoid and how to self control The parts of the brain in this circuit pathway are the hippocampus dorsal regions of the accumbens ACC the dorsolateral prefrontal cortex DLPFC and parietal cortex For example brain imaging studies have shown that people who had restricting type anorexia nervosa may have a different balance between these pathways so that they tend to worry about planning and self control and long term consequences making it difficult to enjoy immediate rewards FEAST ED org 5

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DOES FOOD PLAY A ROLE We know that starvation and weight loss have powerful effects on the body and the brain Malnutrition impacts on the brain s capacity to think manage emotions and process information from its environment Starvation often exaggerates an individual s personality traits and ways of thinking Malnutrition may lead to changes in brain development even after they have restored normal eating and weight We also know that the brain responds to and has an effect on hormones and other body systems that are undernourished Food certainly plays a major role the most urgent task of early recovery and maintenance is restoring the patient s normal weight with adequate daily nutrition An undernourished individual s brain cannot recover DOES DIETING CAUSE EATING DISORDERS It is perhaps more accurate to say that a person s response to a diet can reveal an eating disorder Most children and adolescents can diet and then go back to their normal eating behaviors When two young women decide to lose a few pounds together and one gives up after a week and the other not only continues but becomes underweight and obsessive it is likely that the difference between them is a difference in how their brains respond to inadequate nourishment The one who ends the diet is responding to the biological need to eat normally Neuroimaging studies indicate that anorexia nervosa patients are able to ignore urgent signals from the brain to eat that most people cannot resist There is also evidence that anorexia nervosa patients may feel less reward from eating and feel some relief from anxiety when under eating AN UNDERNOURISHED INDIVIDUAL S BRAIN CANNOT RECOVER MY SON IS ASHAMED TO HAVE AN EATING DISORDER BECAUSE EVERYTHING HE HEARS OR READS IS ABOUT GIRLS Rates of eating disorders are higher in girls than boys especially for anorexia nervosa and bulimia nervosa This does not mean however that the diseases are less severe in male patients Just as with other illnesses where males are more likely to be affected like heart disease and autism there is no reason to refer to eating disorders as female problems FEAST ED org 6

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THERE IS NO REASON TO REFER TO EATING DISORDERS AS FEMALE PROBLEMS During adolescence male and female children develop differently Girls and boys have different changes in the hormones in their body and these affect metabolism and body shape For example estrogen affects chemicals in the brain like serotonin that have a strong in uence on appetite and emotions Puberty brings dramatic changes in certain areas in parts of the brain that may contribute to excessive worry and increased perfectionism Changes in the body also bring changed interactions with the environment including a pressure to diet for girls and to appear athletic for boys Romantic interests and social pressures bring stresses to the brain as well Treatment for both boys and girls involves restoring the brain s functions providing a supportive environment and good mental health care HOW ABOUT MEDICATIONS In eating disorders food is medicine So far there are no psychiatric medication that cure eating disorders but several may help with symptoms or with the distress at certain stages of treatment In addition because many people with eating disorders also have other disorders they may be treated with psychiatric medications WE RAISED OUR KIDS IN THE SAME WAY WHY DID ONE GET AN EATING DISORDER AND THE OTHER DID NOT All individuals including identical twins have unique brain development Starting in the womb brains are affected by hormones nutrition and experience Even virus exposure may play a role We know for example that being born in certain seasons or with an opposite sex twin can affect the risk of an eating disorder While two people may be born with an equal disposition for an eating disorder many factors may determine whether the disorder occurs or what form it takes We also know that each person is born with tendencies for personality traits like perfectionism or anxiousness that last their whole lives and seem to be associated with eating disorder risk Two siblings might react to the same situation a family crisis for example in very different ways which tells us something about their lifelong traits Two siblings may become anxious about an event but one calms down when the danger is gone state and the other might remain anxious regardless of the situation trait FEAST ED org 7

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OUR DAUGHTER DOES SO WELL IN SCHOOL IT SEEMS TO BE THE ONLY THING THAT MATTERS TO HER For those with eating disorders it is common to have traits that are obsessive This can be good as when it helps with schoolwork or other detailed work or bad as when it limits one s activities or makes normal life unpleasant Other common traits are a strong sense of right and wrong following rules caring about others and worry about the future Because these qualities are often highly valued in society those who recover from eating disorders are also often quite successful in their careers relationships and interests OUR SON SAYS HE S NOT HUNGRY BUT HE MUST BE WHAT S GOING ON For healthy people appetite seems to work in a very simple way eat when you re hungry stop when you re full In fact appetite is complex and involves not only the senses but also emotions hormones and levels of nutrients in the bloodstream all coordinated by the brain which has other competing functions The person s history with food also matters as does the avor and availability of food People with eating disorders may also have a disturbance in appetite Hunger feels different fullness feels different and eating less than needed actually can feel calming and relieve anxious and depressed feelings for young people with this predisposition To research this scientists have studied the brain response to sweet drinks comparing people with anorexia nervosa with others In both groups the tongue tasted the sweetness but as the signal passed to the primary taste center in the anterior insula of the brain individuals with anorexia nervosa processed the taste differently This even occurred when they looked at pictures of food while having their brains imaged Something was different in the anorexia nervosa patients and between current patients and recovered patients IN EATING DISORDERS FOOD IS MEDICINE FEAST ED org 8

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THOSE WHO RECOVER FROM EATING DISORDERS ARE ALSO OFTEN QUITE SUCCESSFUL IN THEIR CAREERS RELATIONSHIPS AND INTERESTS The conclusion Those with anorexia nervosa had brains that experience altered reward from food This helps us understand the struggle with decisionmaking around food choices Without the positive reward that comes from eating it is possible that patients have a greater ability to ignore hunger cues yet still display great interest in food and cooking because at some level they know they are hungry The insula a part of the brain that processes taste is also important to keeping us aware of our body and any changes going on If the insula is not giving us those messages it could help explain why patients feel fine despite being quite ill and may contribute to the distorted sense of body shape and size so common to these patients IT S NOT JUST THE EATING OUR SON WON T STOP EXERCISING Although patients give many reasons for needing to exercise some of this drive may also be explained neurologically Studies with rats have shown that the drive to exercise even when exhausted and underfed can be so strong that animals might run until they die Dopamine a chemical in the brain neurotransmitter may play a role Leptin a newly discovered hormone that affects the brain s hypothalamus is believed to contribute to hyperactivity in starving mice SHE THINKS WE RE GOING TO MAKE HER FAT Eating disorders are perplexing and difficult to understand for both the family and the patient Fears sometimes irrational ones can take hold and be impossible to argue away Some of these fears have to do with what others are doing and saying Eating disorder patients are often on high alert to criticism and struggle to take in compassion while ill as their attention is very focused on the immediate concerns of the eating disorder Patients often report feeling disconnected and distrustful of family and friends Some of these symptoms may be worsened by altered brain function and malnourishment Repairing relationships with family is an important aspect of treatment FEAST ED org 9

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I DON T WANT TO TELL ANYONE THAT MY DAUGHTER HAS SOMETHING WRONG WITH HER BRAIN I M AFRAID SHE LL BE STIGMATIZED AND FEEL BAD ABOUT HERSELF This is unfortunately true there is stigma around psychiatric illnesses including eating disorders The stigma is based on ideas that are mostly unfounded for example that brain problems can t be fixed that patients don t recover or that they are permanently broken or strange In any case hiding from the truth may lead to poor care decisions and lower the chance of full recovery It is important for parents to know that mental illness is quite common and a new era of thinking about the brain and psychiatric disorders is under way Like breast cancer eating disorders need not be something that is whispered about and the end of stigma begins with how each of us addresses it HOW DOES NEUROSCIENCE HELP WITH TREATMENT The most important lesson from neuroscience is that eating disorders are treatable Second knowing that the brain is operating differently in eating disorder patients can help families respond with less frustration it can help to understand that this is not a set of choices or lack of motivation to change No one including the patient is at fault Finally parents and families need to focus on helping the patient regain their health through normal eating providing a warm and supportive family environment and working with a clinical team with the most recent training and expertise In addition new advances in understanding eating disorders are leading to new therapies psychological and medical that target the specific pathways that have gone awry for the patient For example treatment may help people learn to use constructive coping strategies for traits such as anxiety or perfectionism rather than engage in unhealthy or destructive behaviors An eating disorder diagnosis is an opportunity to begin treatment that can free a loved one to go on with their life Modern neuroscience has a great deal to offer families doing what they do best supporting a loved one FEAST ED org 10

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RESOURCES F E A S T Families Empowered and Supporting Treatment of Eating Disorders www feast ed org Academy for Eating Disorders 111 Deer Lake Road Suite 100 Deerfield IL 60015 USA 847 498 4274 www aedweb org FEAST ED org 11

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