ABSTRACT
Carolin describes seeking treatment for Billie, her youngest of three children, who developed anorexia nervosa (AN) at age 10.
Initially I was pleased when Billie lost some weight as she had been a little tubby and was teased at school. But when Billie began receiving praise on her slimness, she lost more and more weight. We approached our local general practice physician and shortly after a paediatrician confi rmed AN. By now Billie was medically compromised, and was admitted to hospital.
The paediatrician and GP provided little information on treatment options. Initially Billie received treatment at our local rural hospital which had no eating disorder specialist staff.
After six weeks, she was discharged and remained out of hospital for the next eight months. Our local GP and dietician monitored weight and adjusted food requirements weekly. GP visits were conducted privately, parents confined to the waiting room. Clinicians said recovery was Billie's responsibility; her illness raged. We were unaware of AN behaviours, such as disposing of food and exercising behind closed doors.
After eight months Billie was not gaining weight and her GP suggested the best treatment option was at a tertiary hospital 200 km away. There was no facility for parents to accompany Billie nor was it recommended that we be involved in the treatment. Instead we chose a private outpatient eating disorder facility, 2,000 km from home. This was expensive but seemed our best hope. We could be involved but received no strategies or education on caring for Billie outside the one-hour therapy sessions. Again Billie was expected to eat and consume the necessary calories to increase weight with little or no involvement from family members. We were told not to make food the issue. Her weight plummeted so much in one month she 284required an emergency hospital admission in an intensive care unit followed by two weeks on a psychiatric ward and four months in a family therapy unit. Feeling stumped, clinicians suggested Billie be discharged with a nasal-gastric tube to be fed at home until she chose to eat.
Eighteen months of feeding with a nasogastric tube and weekly psychological therapy, GP and dietician appointments, yielded no progress. Billie's identity and dependence on the tube was evident. Three years had lapsed since her original diagnosis of AN.
In desperation we agreed to participate in a new trial, called the Maudsley approach, being implemented at a hospital 800 km from home. Billie was admitted to this hospital's adolescent eating disorder unit but made little progress. I suggested care by parent as an option, similar to that operating for oncology patients/families, and the psychiatrist and hospital staff agreed. Supervision was around the clock. Slowly, over three months, Billie's weight increased and eventually the NG tube was withdrawn. Set target weight and bi-weekly therapy sessions kept us on track. Externalizing the illness from Billie helped avoid guilt over the AN's outrageous behaviours and emotions and we learnt to view these as symptoms of the illness.
Billie's suffering may have been considerably less if current information on evidence-based treatments had been supplied at the outset. If we, as parents, had been considered part of the treatment team we would have benefi ted from support and education on dealing with AN behaviours, and from feedback on how our reactions could maintain the illness.
During my three-year search to find a treatment to save Billie, I saw the need for clinicians to be proactive in implementing evidence-based treatments instead of waiting for change to occur when the child feels ready. Clinicians have a duty of care to provide treatment based on research evidence.
