A Canadian 10-year-old’s story of misdiagnosis of an eating disorder shows that the pathway to a correct diagnosis can travel through many different medical disciplines as a mystery even to medical experts.

Norah’s self-explained symptom was nausea, and when offered food she would say she couldn’t eat it but she didn’t know why. Her symptoms grew worrying as her hair began to fall out. Paediatricians who investigated ruled out an eating disorder initially because Norah had no ‘body image’ issues. Looking for that body image relationship took medical experts on the wrong path, failing to consider Avoidant Restrictive Food Intake Disorder (ARFID).

Norah’s mother writes: “Tests showed Norah had a low white cell count, and some of her other blood markers were off, but didn’t yield a definitive diagnosis. She was worked up by people from the hematology, oncology, rheumatology and gastroenterology departments.”

Each test raised more questions but provided no clear answers. Over the course of five months waiting for treatment then months of hospital admission, Norah had infections, pneumonia, fatigue, a dropping heart rate and pain.

Not one of her specialists mentioned a non-body-image eating disorder. Mum said: “After a month of watching my child refuse to eat nearly everything, I knew that food was the problem, even if the doctors were unsure. I raised the possibility of an eating disorder with Norah’s therapist, who referred us to an eating disorders specialist.”

It had taken 16 months of serious medical symptoms before Norah received the specialist help she needed in an eating disorder hospital. The good news is that once she was in the right place, her weight recovery and physical and mental health began to improve and a year later she has resumed her now 12-year-old normal growth pattern. But recovery takes years and sensibly, Norah still works daily on her recovery, which includes being monitored by both medical doctors and mental health professionals specialising in childhood eating disorders.

Mum said: “Her weight has been restored. She has grown five inches and three shoe sizes in a year. Everyone who loves and supports Norah has been delighted with her progress. When she turns down food now, we lovingly guide her and use the tools we have acquired to help her finish the meal.

“Norah’s eating disorder is now reclassified as anorexia nervosa. I’ve learned that recovery isn’t a straight line, and you need to surround your family with the best professionals you can find. We attend twice-weekly family therapy sessions with an expert in eating disorders. Our days are filled with minivictories. I smile when she devours a cupcake, and we are grateful that the road is slowly getting easier.”

Ellern Mede Medical Director, Dr Hind Al-Khairulla said: “In the UK, NICE guidance is that any sign of a possible eating disorder, even if it is a slight possibility, should immediately be referred to an eating disorder specialist. BEAT, the eating disorder charity is now giving the public who call their helpline free leaflets to take to their GPs to ask them to do this. Ellern Mede offers specialist assessment for both NHS-referred or private GP-referred clients aged 8 to 18. Our website is available for enquiries 24 hours a day. I would encourage parents to seek specialist diagnosis as soon as possible if they are worried about their child’s relationship with food.”

To read the Canadian source for this story, courtesy of its original author Kathryn Ferguson for The Washington Post republished on 1 August 2018 in The Toronto Star see https://www.thestar.com/life/health_wellness/opinion/2018/08/01/not-all-eating-disorders-are-related-to-body-image.html