Eating Disorder Toolkit

Treating eating disorders happens best under the guidance of a multidisciplinary treatment team:

• Primary medical provider 
• Mental health therapist (LPC, LCSW, Psychologist), preferably trained in eating disorders
• Registered dietitian (RD), preferably trained in eating disorders
• Family therapist (if recommended)
• Psychiatrist (if recommended)

It is imperative that each member of the treatment team be willing and able to collaborate care with the other disciplines in a timely manner to ensure the best and most consistent care across all disciplines.   

Unfortunately, sometimes it is not possible for all treatment team members to be part of the care team.  This can be for a variety of reasons such as:

Lack of providers in a specific geographic area.  

• If there is a lack of providers in your geographic area, please investigate virtual resources or referrals for your patients.  There are many excellent virtual resources that could be assembled to form a full treatment team.  Another great option is getting case consultation from a certified eating disorder specialist in that particular discipline.  To connect with a Certified Eating Disorder Specialist visit the International Association of Eating Disorder Professionals website at iaedp.com and click on the link “Find An Eating Disorder Professional”.  

Lack of insurance coverage for a particular specialty area. 

• It is advised that patients/families check with their health insurance company on coverage for each of these specialty areas for the treatment of an eating disorder.  

Patient/family may not want a particular discipline added to their loved ones’ treatment team.

• This can be for a variety of reasons.  We encourage this be reviewed on a case-by-case basis.  In most instances a full treatment team offers the best outcomes.  

Diagnosis of an eating disorder can be made by a medical provider, therapist, psychologist, or psychiatrist.  These diagnostic criteria are provided for educational purposes. Please refer patient to an evaluation with a specialist if there are concerns for restricted or avoidant eating. For a complete listing (along with criteria) for feeding and eating disorders, please refer to DSM-5 (Diagnostic and Statistical Manual of Mental Disorders).

Avoidant Restrictive Food Intake Disorder (ARFID)

Avoidant/restrictive food intake disorder (ARFID) includes restrictive eating due to one or more of the following:

• Low appetite and lack of interest in eating or food.
• Extreme food avoidance based on sensory characteristics of foods e.g. texture, appearance, color, smell.
• Anxiety or concern about consequences of eating, such as fear of choking, nausea, vomiting, constipation, an allergic reaction, etc. 
  
  The diagnosis of ARFID requires that difficulties with eating are associated with one or more of the following:

• Significant weight loss (or failure to achieve expected weight gain in children).
• Significant nutritional deficiency.
• The need to rely on a feeding tube or oral nutritional supplements to maintain sufficient nutrition intake.
• Interference with social functioning (such as inability to eat with others).

Note:  Consider SLP and/or OT referral when there are swallowing and/or sensory concerns.

Anorexia Nervosa

Anorexia nervosa includes the following symptoms:

• Caloric restriction leading to underweight OR weight that is less than what is expected for age.
• Intense fear of gaining weight OR persistent behavior that interferes with weight gain.
• Body image disturbance OR undue influence of body weight or shape on self-evaluation, OR lack of recognition of seriousness of low body weight.

Atypical Anorexia Nervosa

Atypical anorexia has the same criteria as anorexia nervosa with the exception of a BMI that is normal to above normal ranges despite significant weight loss.

Bulimia Nervosa

• Recurrent episodes of binging and purging at least once per week (purging may include self-induced vomiting, fasting, excessive exercise, laxative or diuretic misuse).

Binge Eating Disorder

• Discrete episodes of binge eating that occur at least once per week for 3 months.
• Episodes must include eating more than another person would in similar circumstances, and sense of loss of control.
• Episode have at least one of the following features: eating in secrecy, eating rapidly, eating until uncomfortably full, eating when not hungry, or guilt/shame afterward.

Source of information:  National Eating Disorders:  https://www.nationaleatingdisorders.org/warning-signs-and-symptoms.  Please note:  this is not a checklist but instead a list of symptoms that could be present with some eating disorders.

• Preoccupation with dieting/fad dieting, weight or weight loss, body shape and size
• Frequent mirror checking for perceived appearance flaws 
• Preoccupation with food or food avoidance, calories, carbohydrates, sugar, fat
• Overly strict food rules
• Refusal to eat certain foods or up to whole food groups, or foods previously enjoyed
• Cutting out an increasing number of foods or food groups
• Increased concern and time spent thinking about “health” of ingredients, what is deemed “health, clean, or pure”, high distress when healthy foods aren’t available, follow and fixated on health/clean eating

- For more information, search ORTHOREXIA on the National Eating Disorders website 

• Withdrawal from friends/family, no longer participating in things use to enjoy doing
• Eating/behavior rituals with eating (certain utensils, certain order of eating, slow/fast eating pace, preference to eat alone)
• Excessive or rigid exercise regime (despite weather, sickness, injury, fatigue), need to ‘burn’ or get rid of calories, intense feelings if unable to exercise, exercise used to manage emotions, discomfort with rest or inactivity, exercise for permission to eat, exercising in secret, intense feelings involving physical activity
• Feelings of disgust, shame, guilt overeating, low self-esteem
• Eating of non-food items
• Small portions or skipping meals
• Gastrointestinal concerns (constipation, diarrhea, vomiting, acid reflux, bloating, stomach cramping, getting full quickly)
• Menstrual irregularities (light, inconsistent, irregular, amenorrhea, missing periods without the use of hormone contraceptives)
• Growth chart percentile changes, weight fluctuations
• Mood swings, difficulty concentrating, feelings of disgust, shame, guilt over eating, low self-esteem, withdrawal from friends and or family, depression and/or anxiety
• Low appetite, limited preferred foods, and lack of interest in eating or food.  Extreme food avoidance based on sensory characteristics of foods e.g. texture, appearance, color, smell.  Anxiety or concern about consequences of eating, such as fear of choking, nausea, vomiting, constipation, an allergic reaction, etc.  

Please note:  this is not a checklist but instead a list of medical findings that could be present with some eating disorders.

• Orthostatic intolerance symptoms, lightheadedness, dizzy upon standing, fainting
• ECG, bradycardia, irregular heart patterns
• Muscle weakness
• Cold intolerance (feeling cold all the time, extremities cold and mottled, dressing in layers-can also be to hide weight loss or self-harm)
• Difficulties with sleep or increase in sleep pattern
• Slow/poor wound healing, dry skin, hair that is dry and/or falling out, yellow/orange skin, new growth of fine body hair (lanugo), brittle nails, cuts/calluses across tops of finger joints (from self-induced vomiting)
• GI:  delayed gastric emptying, slow intestinal transit time, nausea, bloating, postprandial fullness, GERD, constipation, esophageal mucosal damage, Mallory-Weiss tears, superior mesenteric artery (SMA) syndrome, hepatic transaminase concentrations and coagulation times can be elevated
• Weight loss with or without the fear of weight gain or body image concerns
• Dental problems (erosion of enamel, cavities, tooth sensitivity, swelling around salivary glands, discoloration of teeth)
• Swelling (edema)
• Frequent sickness (impaired immune system)
• Re-chewing, re-swallowing or spitting out food
• In the presence of diabetes:  neglect and/or secrecy of diabetes cares, not taking medication as prescribed, infrequently filled prescriptions, missing diabetes related appointments, fear of insulin causing weight gain, restricting certain foods, A1c of 9.0 or higher on continuous basis, fear of low or high blood sugars, inconsistent meter readings, restriction of certain foods or food groups to lower insulin usage, deteriorating or blurry vision, fatigue/lethargy, frequent bladder and/or yeast infections, persistent thirst and frequent urination, nausea and/or vomiting, unexplained weight loss, low sodium and/or potassium, DKA or near DKA episodes, in addition to any of the other symptoms described above
• Renal and electrolyte effects:  dehydration, electrolyte abnormalities, edema.
• Endocrine:  euthyroid sick syndrome, hypercortisolemia, amenorrhea, low testosterone, smaller testicular volumes, growth delays/cessation, low bone density

Abnormal laboratory and electrolyte possible findings:

• CBC, CMP, Amylase, TSH, urinalysis, electrolytes.  
• Labs associated with concern for refeeding syndrome: 
• Low Potassium - Hypokalemia ( < 3.0 mEq/L)
• Low Phosphorus – Hypophosphatemia ( < 2.5 mg/dL)
• Low Magnesium – Hypomagnesaemia (less than 1.46 mg/dL) 
• Labs Associated with Concern for Purging

Treatment options in or near Wisconsin

• View PDF

Patient’s weight

Patients with eating disorders are often highly fixated on their weight and body image. Desired weight loss is a common driver behind patients’ decision to restrict food intake. As a result, it may be in a patient’s best interest to: 

• Refrain from discussing weight loss or gain. 
• Encourage removal of scales at home (or at least removal of patient access to scales at home).
• At medical visits obtain “closed” weights (weight number is kept “closed” or unknown to patient) 
• Omit weights on any documents provided to patients during visits.  
• Focus on other health markers when making nutrition changes. For example, increased energy, improved mood, stronger hair or nails, decreased muscle fatigue during sports, etc.

Please note:

• Exposure and Response Prevention (ERP) is a treatment modality where use of scale/weight exposure may therapeutically be recommended.
• Family-Based Treatment (FBT) traditionally uses open weights in therapeutically recommended ways.  

“Closed” weight at medical office

IMPORTANT: keep the weight/number "closed" (unknown to patient).  

1. Encourage the use of bathroom prior to weight check.
2. Take off shoes and any heavy clothing patient is wearing, this includes jackets, sweatshirts/sweaters, and any items in pockets (cellphones).  It's okay to weigh patient wearing a light layer of clothing.  If treatment team or caregiver(s) suspect that patient is hiding weighted items in pockets, bras, and underwear then collecting an examination gown weight would be encouraged (pending clinic protocols).    
3. Keep your patient from touching nearby furniture or walls.
4. Place a light covering over the “number” screen (a post-it note typically works well), so that only clinician can see the number.
5. Have patient get on the scale backwards.
6. Do’s: 

• Omit weights on any documents provided to patient during visit.
• Refrain from discussing weight at all with patient (leave this up to treatment team to deem what is best for each individual patient).
• Provide caregivers with weight information separately from the patient.

Telehealth 

In preparation for a telehealth visit, an updated weight check should be completed ideally the day of, or up to 2 days prior to the telehealth visit.  This updated weight could be obtained through a “weight check” at the primary care office or at home, if a caregiver has access to an accurate home scale (see instructions below).  In either situation, it is recommended that the weight/number is "closed".  

“Closed” weight at home 

 If family has an accurate home scale, a closed weight check can be completed at home by following these steps.  IMPORTANT: keep the weight/number "closed" (unknown to patient).  

1. Encourage the use of bathroom prior to weight check.
2. Take off shoes and any heavy clothing your child is wearing. This includes jackets, sweatshirts or sweaters. It's OK to weigh your child wearing a light layer of clothing.
3. Keep your child from touching nearby furniture or walls.
4. Use the scale on a solid ground (tile/vinyl/laminate/cement flooring; not carpeting).
5. Place a light covering over the “number” screen (a post-it note typically works well), so that only parent/guardian/caregiver can see the number.
6. Have your child get on the scale backwards.
7. Return the scale to a location where the child does not have access to the scale to weigh themselves.  
8. Communicate updated weight privately with healthcare team.  Caution should be exercised if the child has access to the electronic medical records for this data to be seen in a chart message.  
9. Refrain from disclosing weight or weight trends at all with the child; encourage them to speak directly to treatment team with questions and/or concerns.  

1. Heart rate (pulse) and blood pressure obtained after 5 minutes of supine rest 
2. And repeated after 2 minutes of standing 
3. Orthostatic changes:
Blood pressure: sustained DROP of blood pressure 

• Systolic BP >20 mm Hg
• Diastolic BP >10 mm Hg 

Heart rate (pulse): sustained INCREASE of pulse 

• >40 bpm in teens aged <19 YO

Caregiver website resources 

• http://www.parents-to-parents.org
• http://www.feast-ed.org/
• https://www.emilyprogram.com/for-families/resources-for-families/
• https://www.eatingrecoverycenter.com/resources/families
• https://www.nationaleatingdisorders.org/parent-toolkit

Book resources

• The picky eater's recovery book by Jennifer J. Thomas, Kendra R. Becker, and Kamryn T. Eddy
• AED - Eating Disorders: A Guide to Medical Care - 2021, 4th Edition
• Sick Enough: A Guide to the Medical Complications of Eating Disorders by Jennifer L. Gaudiani, MD, CEDS, FAED
• Cambridge Medicine: Cognitive-Behavioral Therapy for Avoidant/Restrictive Food Intake Disorder: Children, Adolescents, and Adults
• ARFID - Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers by Rachel Bryant-Waugh
• How to Nourish Your Child Through an Eating Disorder by Casey Crosbie, RD, CSSD and Wendy Sterling, MS, RD, CSSD
• Help Your Teenager Beat an Eating Disorder by James Lock, MD, PHD and Daniel Le Grange, PHD
• Cuando tu adolescente tiene un trastorno de la conducta alimentaria by De Lauren Muhlheim, PsyD, FAED, CEDS
• Food Refusal and Avoidant Eating in Children by Gillian Harris and Elizabeth Shea
• Academy of Nutrition and Dietetics - Eating Disorders, Second Edition by Jessica Setnick, MS, RD, CEDRD
• Anorexia and other eating disorders by Eva Musby
• The Eating Disorders Clinical Pocket Guide, Second Edition, by Jessica Setnick, MS, RD, CEDRD

Resources for providers

• American Psychiatric Association (APA) Eating Disorder Practice Guidelines.  Pocket book