I recently received an email from the mother of a patient.
“Leanne has gained 15 pounds!” she wrote. “Gaining weight was difficult, but we’ve worked hard at it. She seems more like herself again.”
Leanne (not her real name) is a dear teenage patient of mine. She wears impeccably applied eyeliner and has brown, trendy bangs. She accessorizes all black outfits with muted vintage cardigans or uniquely patterned dresses and layers ample amounts of fine, delicate jewelry. She is a talented artist. She is joyful, empathetic, compassionate and has a passion for activism.
Leanne is also one of many adolescents battling restrictive eating behaviors during the pandemic.
During Leanne’s well-adolescent exam in January, I noted her weight had dropped almost an entire growth curve. At the time, it seemed that she was returning to her original curve after an acute spike in weight from medications, which had been discontinued. I was reassured by her assertions that she felt healthier after her weight loss, but I still scheduled a follow-up visit six weeks later to check on her weight.
Unfortunately, that follow-up visit was cancelled in March as the COVID-19 pandemic escalated in New York City.
In June, I received a text message from Leanne’s therapist, who noticed Leanne’s prominent clavicles during a virtual therapy session and was concerned about excessive weight loss. The therapist believed it could be managed with an outpatient nutritionist, more frequent psychotherapy and regular medical visits.
A few weeks later, Leanne started coming into my office for weekly weight checks. I was shocked to find that she weighed 20 pounds less than she had in January. The nutritionist had worked with her to eat more, but her weight kept dropping by a pound each week. The psychological barriers created by her eating disorder felt impossible to overcome.
I didn’t know what to do. I wanted to keep Leanne out of the hospital and thought I could provide a higher level of care for her. However, at the rate things were going, Leanne’s now 40-pound total weight loss needed my full attention, which simply wasn’t possible while caring for other patients.
On a bright Friday afternoon in early August, after a long day of virtual visits, I called my good friend Sona Dave (pronounced Da-vay), M.D., an adolescent eating disorder specialist in Long Island, N.Y. She spent an hour reviewing Leanne’s case with me and encouraged me to talk to the family about sending Leanne to a residential program.
However, disordered eating (anorexia, bulimia, etc.) was at the worst Dr. Dave had ever seen in New York City. The stress of COVID-19 and the isolation of quarantine increased depression, anxiety and other mental health issues. Eating disorders are only partially about body dysmorphia and body image. They often stem from an attempt to achieve control while in a state of anxiety or uncertainty.
An isolating pandemic was the perfect scenario to worsen such a condition, and the problem was not limited to New York. The National Eating Disorders Association reported a 70% increase in the number of calls and chat inquiries compared to last year.
This spike meant that inpatient eating disorder units, reserved for patients with severe malnourishment, were full. Most residential programs, for patients with severe weight loss but no medical complications, were at capacity with long waiting lists. Psychiatric units that previously could be used for eating disorder patients were now COVID-19 units. Partial hospitalization programs, day programs for patients with eating disorders, were completely virtual and had limits on who could get treatment. The domino effect of how the pandemic had overburdened the medical system was suddenly made concrete to me. It was going to be challenging to get Leanne into a program that could help her.
Leanne also had a form of Medicaid not taken by many partial hospitalization or residential programs, which laid bare the inequity in access to care. Although I often witness such inequities, seeing them play out so grotesquely all at once, for a young patient, felt hopeless.
I pushed hard to convince our care team (Leanne, her nutritionist, her therapist and her mother) that she needed more support than we could provide. None of us felt comfortable sending Leanne to a residential program by herself in the middle of a pandemic. But when she dropped weight again the next week, her mother rushed to apply for programs in and around the city.
After a few weeks of trying and getting waitlisted, Leanne’s mom finally found the Family Based Treatment for Anorexia Nervosa through the Columbia Center for Eating Disorders in New York City.
The program has three stages. In the first stage, it empowers parents to renourish their children to baseline weight. In the second stage, it empowers the child or teenager to be more autonomous with their eating behaviors. In the final stage, the program helps the patient and family reintegrate these new tools and habits into normal daily routines. During the pandemic, the FBT program has gone fully virtual. The FBT therapist meets with Leanne and her mom remotely and oversees home-based treatment of five or six other patients while working with a supportive team to help guide individualized treatment.
Leanne still comes into our office for weight checks and blood work every few weeks. I get updates from the FBT therapist weekly, and work with her to set goal weights. Leanne and her family are well into the first stage of the FBT program.
I remember when I first talked to Leanne’s FBT therapist. I wasn’t sure that a remote program was the right level of care. In fact, I assumed any sort of virtual care was inappropriate for the severity of Leanne’s weight loss. However, her slow but consistent progress has proved to me that with the right tools and support, high levels of virtual care are possible and potentially revolutionary.
I saw Leanne in the office recently. This time she was wearing dramatic dark eye make-up with a sense of exhaustion. I can only imagine what it feels like to have to eat 3,000 calories daily under the supervision of parents and therapists. Thankfully, the 15 pounds she has gained have made a difference; her clavicles are not as obvious, her shoulders are more rounded and her elbows are less sharp. We try not to talk about the numbers too much with her, just enough to encourage and to let her know she’s on the right track. For her, the weight gain is not a celebration – every pound she gains triggers a loss of control – and every pound she has yet to gain feels insurmountable.
Lalita Abhyankar, M.D., M.H.S., is a family physician practicing in New York City. You can follow her on Twitter @L_Abhyankar.