Supporting parents of youth with eating disorders in and out of the hospital

“While I was in the hospital, when I was struggling the most, like when I was really struggling toeat, they would punish me. They would put me in time out, and then I was missing groups, which really didn’t help.” - patient, aged 18 years

“Recovery is definitely not a linear process. A slip does not always mean a fall.” - patient, aged 19 years

“I have atypical anorexia – I was always told I wasn’t sick enough” – patient, aged 17 years

These are the powerful patient quotes that Ellen S. Rome, MD, MPH, FAAP, head of the Center for Adolescent Medicine and professor of Pediatrics at Cleveland Clinic Lerner College of Medicine at Case Western Reserve University in Cleveland, Ohio opened with in her presentation on discussing helping families manage their children’s eating disorders at the 2022 AAP National Conference & Exhibition.

The first point that Rome noted is to remind families, “Your child is NOT their eating disorder. Name it and disinvite it to the table at mealtimes, in and out of the hospital.” Another important message: that body type is not indicative of healthy eating. Hearing things like, “you aren’t that thin,” can deter people from treatment, she said.

Rome then shared some pearls to discuss with families:
--Food is medicine
--It is absolutely not the parents’ fault that their child has this illness
--Separate the child from the illness in your mind: symptoms like emotional dysregulation is a result of the illness
--Patients with eating disorders are anxious, stressed, and scared. Caregivers, in return, need to stay compassionate, calm, and confident.
--Always remember, EDs are complicated illnesses, connected by genetics, environment, neurotransmitters, triggers, and serotonin levels. “Build your team as best you can,” says Rome, “and take advantage of virtual health opportunities to fill in the gaps. The treatment need not be ‘one size fits all.’”

Additionally, caregivers need to educate themselves as much as possible about current evidence-based practices for ED, and get a current copy of their health plan benefits from their employers.

Rome also shared a pearl she got from parents during the course of her practice: get a spiral notebook to jot notes from hospital, treatment information, etc.; and offered some highly regarded resources (the FEAST website; Decoding Anorexia, by Carrie Arnold, and Sick Enough: A Guide to the Medical Complications of EDs, by Jennifer Gaudiani, among others.

Rome discussed inpatient criteria, based on AAP, AED, and SAHM guidelines, which included watching for certain vital signs (severe bradycardia, orthostatic hypotension); acute food refusal; and suicide ideation. Rome also went through a vocabulary that caregivers should learn to understand the disease better (caloric restriction, which can cause GI, renal and endo disorders).

Very importantly, “make sure that caregivers know that all the physiological changes—heart, brain, gut, bones, fertility—are reversible with refeeding,” Rome emphasized. Rome shared with the audience a hospital case study, and details of process of a child admitted for an ED, as well as how to create quality, family-based treatment for adolescent anorexia nervosa.

For the pediatrician, however, it is important to:
--be a consultant to parents and family-based treatment clinician
-explain medical seriousness of disorder and provide comprehensive medical assessment
-avoid being directive
-empower parents in decision making
-support full weight restoration and full remission

“Parents need to stay informed every step of the way,” remarked Rome. She emphasized that there will be a wide range of emotions, including feeling scared, confused, and relieved, and noted that “while family therapy is not fun, it helps the kid understand what the parents are going through.”

In addition, Rome offered recommendations for responses to behavioral symptoms in a child with ED, and ended her presentation with this quote from a 19 year-old patient, “The eating disorder lives in the gaps. It will find the gaps and split the kid from the parents and parents from the care team. So the more you can stand shoulder to shoulder, the better. The eating disorder lives in the last bite.”

Reference
Rome ES. Supporting parents of youth with eating disorders in and out of the hospital. 2022 AAP National Conference & Exhibition. October 8, 2022. Anaheim, California.