Eating Disorders: An Outpatient Recovery Guide for Parents and Caregivers

You are the most important member of the team caring for your adolescent. Your engagement and following the treatment recommendations are very important. Here are some things you can do to support your adolescent’s treatment:

• Ask questions during clinic visits. There is some overlap between what the team members discuss during the visits. But, in general, ask the medical provider about your adolescent’s physical condition, ask the dietitian about food and nutrition related issues, and ask the mental health therapist about emotional concerns.
• Be strong and present. Repeat to your child that “food is medicine, no negotiations.” This is firm and loving support. (KeltyEatingDisorders.ca Parents Survive to Thrive Guide).
• Let your child know that “we as a team are stronger and louder than the eating disorder.” (KeltyEatingDisorders.ca Parents Survive to Thrive Guide).
• Take care of yourself. Treating an eating disorder is stressful for family members as well as patients. The length of treatment lasts from months to years. If you are having trouble coping, talk to your adolescent’s team about what has helped families in the past. Sometimes parents decide they would like their own counselor during this time to help them deal with stress.
• Do not blame yourself for your adolescent’s eating disorder. There are many reasons why a young person develops an eating disorder. We may never know the exact reason.

At medical visits, a provider (a doctor, nurse practitioner or physician assistant) will assess your child for medical stability. The evaluation will include:

• Taking a family and patient history
• Checking vital signs
• A physical exam
• Discussion about safe levels of physical activity
• Ordering lab work and other tests, as needed

At visits, the clinic will take your adolescent’s weight with their back to the scale while wearing a gown and after using the restroom. This is called a “blind weight.” Blind weights have been shown to support early stages of eating disorder recovery. Your teen’s medical provider and therapist will work together to decide when blind weights are no longer recommended.

Dietitians have advanced training in helping adolescents form a positive relationship with food. Their first goal is to build trust and learn more about your family’s dynamics at mealtime. This will help them make recommendations that meet your adolescent’s needs. Our dietitians discuss topics like:

• Metabolism (how the body changes food into energy)
• Energy needs for growth and development and activities
• The effects of irregular eating on the body
• Meal or snack composition and timing, as well as the role of different food groups in the body

Outpatient mental health care is a critical component of eating disorder recovery and may include individual, family, or group therapy. Your medical team partners closely with your child’s community therapist. If you do not have a therapist or are having difficulty getting one, our social work team in Adolescent Medicine can help families locate therapists.

Malnutrition can affect the heart, lungs, kidneys, brain, and other organs. If your adolescent has concerning vital signs (low heart rate, low blood pressure) or abnormal lab results during their medical visit, they may be sent to the Emergency Department for evaluation.
While at home, you should take your adolescent to the nearest emergency department or call 911 if they have any of these symptoms:

• Chest pain
• Shortness of breath
• Feeling like their heartbeat is “off” or irregular
• Dizziness to the point where your adolescent feels like they will faint
• Fainting or loss of consciousness
• Bright red or dark blood in vomit
• Maroon or black blood in the stool
• Very bad stomach (abdominal) pain
• They seem unusually slow, confused, unresponsive or uncoordinated
• Concern for suicide, self-harm, or worried about your child’s safety

If you are not sure whether your adolescent needs to go to the emergency department, take them or call 911.

If your adolescent is recommended to go to the emergency department, this does not mean they will be automatically admitted to the hospital.

The emergency department team will complete an evaluation which may include vital signs, physical exam, EKG, and labs. The emergency department may also give intravenous (IV) fluids and perform a mental health assessment depending on the patient’s medical status and needs.

The emergency department will determine if admission to the hospital is necessary.

If your adolescent needs to be admitted to the hospital, a team of healthcare providers from General Medicine, Adolescent Medicine, Psychiatry, and Clinical Nutrition will evaluate your adolescent.

Over the course of your hospital stay, your team will treat starvation with gradual refeeding over days to weeks. This means your inpatient team will prescribe the amount of nutrition that your child’s body can tolerate and increase it gradually until we find the amount that meets their body’s needs.

Our goal of refeeding your child in the hospital is to:

• Medically stabilize them
• Monitor and manage how their body responds to the nutrition
• Provide support to help families learn how to nourish their child’s body
• Offer caregivers skills and tools to coach their child through mealtimes

During your stay, your inpatient team will work to determine the best plan once discharged. Recommendations may include:

• Close follow up with primary care provider, community dietitian, and community therapist
• Hospital Transition Support (HTS) program in the Adolescent Medicine Clinic
• Intensive Outpatient Program (IOP) or Partial Hospitalization Program (PHP)
• Residential treatment

Talk with your dietitian and therapist about strategies to support your adolescent at mealtime. Here are a few things to consider:

• We recommend that caregivers plan, grocery shop, prepare and plate meals in early stages of recovery without input from the adolescent.
• It may be helpful to try to talk to your adolescent a few hours before a meal, offer support, and acknowledge how hard meals can be.
• Plan some topics ahead of time to discuss at dinner that have nothing to do with food. After the meal, do something distracting with your adolescent like watching a movie or playing a game.
• Eating in new and different settings can be stressful – for example, on vacation, at friends’ houses, at restaurants, at family events, and during holidays. Try to be patient and focus on one meal at a time. Plan ahead so that all meals and snacks are completed.
• Your adolescent may need extra support for lunch at school. Your team will work with you to find options if that is needed.

Talk with your medical provider to find out if physical activity is safe for your adolescent. We understand that activities like dancing, swimming, playing sports, or running are important to your adolescent and to you. We want your child to be able to do activities that make them happy and in a healthy way that promotes growth and development.

Your care team may recommend that your child limit or stop exercise entirely for a period of time during recovery. This may include fun family outings like hiking, swimming, or skiing. This is for your adolescent’s medical safety and these restrictions may bring up emotional escalations. Your teen’s therapist can help them manage distress they may experience from not being able to exercise.

Talk with your Adolescent Medicine provider about a referral to the Meal Support class.

The Meal Support class is a virtual 2-hour class offered at Seattle Children’s. This class provides information on how caregivers can support their child with recovery at home and how to provide emotional support before, during and after meals.

Topics covered are:

• How eating disorders impact growth and development
• Structuring mealtimes and normalizing eating habits
• Challenging irrational thoughts that occur with eating disorders

Caring for a child with an eating disorder is hard work!

Recovery takes time.

Support your relationship with your child by separating your child from the eating disorder – many of the disordered thoughts and behaviors are the eating disorder.

Your mental health and well-being are important! You are not alone – consider reaching out to your community for support and getting your own therapist.