RCPCH Insight
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RCPCH Insight

I am the Monster: the impact of eating disorders in very young children

Jade* is a 9-and-a-half-year-old patient with a passion for running that started during the lockdown. Her family were amazed at her progress from Joe Wicks to 10k but something more was happening. What was driving her weight loss? And what is her monster? Dr Serena Haywood interviews paediatrician and eating disorders national expert, Dr Simon Chapman.

From April next year, some restaurants will include calories on the menus. You can already see this in high street chains like McDonalds or Pizza Hut who for the last decade have voluntarily pledged to label the calories of the food and drink they serve. But this will now be mandatory on menu — in cafes, restaurants and takeaways across the country on all non-prepacked meals. At a glance, customers will see the calorie count of meals eaten out. The introduction of calorie labelling forms part of the government’s wider strategy to tackle obesity and the measures aim to help people make more informed, healthier choices when eating out. But this plan has been met with warnings of a negative impact on those suffering from eating disorders and a lack of evidence to support the effectiveness of calorie labelling to reduce obesity.

There were 4,962 admissions for eating disorders for children and young people aged 18 and under in 2019–20, a 19% increase from the 4,160 admissions seen in 2017–18. During the pandemic, there was a 3-to-4-fold increase of referrals to children’s eating disorder services according to Dr Simon Chapman. He has been medical lead of the Maudsley Child and Adolescent Eating Disorders Service at King’s College Hospital for 10 years and I thought he’d know more about how listing calories on a menu might affect people with eating disorders.

“As it is, a lot of people with eating disorders don’t like going out to eat. They can already look at a menu and know what to avoid as calorie counting is a daily reality, but restaurants are extra stressful as they can’t control what exactly goes into the food. So, they probably won’t eat out as much.

“During the pandemic, the only time we were allowed out was to exercise and as Boris Johnson linked his serious COVID infection to being overweight, you couldn’t miss the health messages. These were directed to adults but were also heard by children and young people. More children were admitted with later presentations, were sicker and with more mental health issues. In addition, there was a sharp rise in presentation of the under-10s.”

Do under-10s even know what calories are?

“Not classically. A 2011 BPSU survey reported on about 250 children aged 9–13 with eating disorders. Most presented to acute paediatrics rather than mental health services, a third with significant medical instability such as a slowed pulse or lowered blood pressure. But they weren’t counting calories. They were investigated for bowel disease and brain tumours, as it should be, but eating disorders were missed. These children develop obsessions other than calories. You should meet Jade.”

Jade’s mum is a wellbeing expert and she perches on chair beside her daughter, waiting for Simon. Behind her, shoes bustle squeakily up and down the acute paediatric unit. Simon appears round the curtain in a flowery blue shirt and hunkers down onto the bed, leaning in to talk with Jade. She avoids his gaze, slowly turning over animal cards in a game of solitaire. Jade, nine and a half, is an easy-going people pleaser and runner. She wants to do a marathon and be in Team GB as soon as she is allowed. When she was admitted, she was running a 5k every day. This all started in the family’s ‘stressful but manageable’ lockdown with Joe Wicks on the telly, exercising with her brother on the living room rug, then training for Couch to 5k with her family. They raised a highly appreciated £1000 for the NHS. Jade got a taste for it and pushed herself a little harder every day, training and increasing her distances and improving her times, her mum tells me. Soon, her parents dropped out and it was just her running. Everyone was exceptionally proud at first. She was clearly talented and very focused.

However, her school started to notice changes in her; running up and down the stairs, a restlessness. Somewhere along the line she ate less. The school and the family didn’t know quite what they were seeing and, as she refused to eat, they ‘tiptoed’ around what was clearly a growing issue. She was losing 1kg a week and as her weight dropped below the 2nd centile, she became physically unwell. “It crept in slowly then suddenly… it all happened so fast… and then it spiralled out of control,” her mother remembers. One day she became constipated, with crippling abdominal pain, angry with tantrums and frank food refusal. She shouted at her parents when they asked her to eat, telling they couldn’t ‘force her’ and they were ‘fat idiots’. The family were sideswiped. This wasn’t the easy-going girl they knew. Undressing her for a bath her mother was shocked to see bruises up her bony spine from intense sit ups. The family sought out medical help which came rapidly from a GP, CAMHS and then King’s. After a difficult few days, to her parents’ relief she accepted the intensive support including nasogastric feeds.

The plan for the day made, Simon asks her if she has any questions. Her mother pushes Jade’s hair behind her ears as it flops into her eyes again and her daughter whispers almost inaudibly, “What have I done wrong?” Her mother and Simon stumble over each other to reassure her that it’s absolutely nothing. She has done nothing wrong. It is not her fault.

But whose fault is it? How could this happen? Her mother knows. She thumps her chest to show me where ‘it’ lives. Jade’s monster. It is her gremlin, her dark manifestation of her eating disorder. “I AM the black thing,” Jade says. Like a changeling, Jade recognised she was not herself anymore and in painful recognition of this, she had named this presence in herself her monster.

Simon is reassured by this. “This is the absolute key to eating disorders. If you can get people to understand that it is a disease entity, not themselves that is the problem. Helping someone to visualise, externalise a thing that can be defeated is very powerful. Jade is remarkable in making the link so quickly.”

But why her? Jade’s mother and father worry they are somehow to blame. They focus on an open and loving parenting style treating their children in a ‘real life way’. If only they had insisted on her eating more? Perhaps they might have set a limit on the running she so clearly loves and excels at? But she is a bright child, doing well at her new school with some pressure from friends and running seemed a great way to let off steam. Nobody talks much about food at home; some rules about sweet food at night and a short lived alliance with vegan-hood but no obsessions. The family watch Friends together but Jade isn’t sure she likes any of the characters. They are all a bit ‘fussy’. Her mother worried a bit about thin role models but watching TV together is a fun family activity reproduced a thousand times across the UK.

But some of her other friends thought differently about bodies. Jade had been enjoying ballet classes then on one day, she was moody before class. She insisted on covering herself down to her knees with a baggy jumper and stood at the back. Her mother wondered, perhaps the girls had been mean to her about her body? Jade wasn’t saying and her family didn’t want to pry. We’ve all had mean girls in our lives, perhaps we’ve been them.

“Kids are horrible all the time!” Simon says. “Bullying can be a trigger especially for more vulnerable children.” And it’s tough out there now. The 2021 Good Childhood Report estimates that one in seven girls, and one in eight boys, are unhappy with how they look. Girls aged 10 to 17 experiencing appearance-related comments at school reported it impacted on their happiness with their appearance and life as a whole.

“It’s not just one thing,” Simon says, “90’s TV shows, mean ballet friends… there isn’t a sole ‘why me’ for anyone. It’s a combination of factors, circumstances, lots of genetics and a heap of chance. What these children do have in common however, even the little ones like Jade, is a perfectionist personality. It’s about being able to delay reward; you can see the bigger picture and wait for the payoff. These children are often old beyond their years, hard workers, not shying away from responsibility and are highly motivated. The person that fixes on the prize when things get tough. That single-minded resolve is so powerful, a remarkable characteristic to have. Like a superpower. But like any superpower it has a darker side.”

Jade’s dark monster? “Eating disorders are a bit like the evil Jedi, the Sith, in Star Wars,” Simon says, “They take a person with a complex inner world and tell them they can have anything they want if they can suffer a little more. Eating disorders takes them away from family and friends and promise happiness. They don’t think they are doing anything wrong because they are working so hard, delaying gratification to satisfy this voice. Fundamentally, it’s the ‘thing’ that needs treatment not the child. And if they can understand that, it gives control back to the parents and empowers the kids. THEY haven’t don’t anything wrong.”

Simon says he sometimes feels like a bit of fraud. His treatment isn’t very sophisticated. It’s food. That’s it. Any paediatrician can treat these children in any paediatric ward, anywhere. Doctors sometimes delay and fret, not knowing how to speak to the children, worried that without the correct psychologist they will somehow get it ‘wrong’. But food is more powerful than any therapy. You can’t negotiate with an eating disorder but you can vanquish the monster with dinner. So Jade can still run but she has to eat. Everyone strikes a deal.

Jade was on her way home. The family were delighted with the medical service all round from the GP to the mental health services, Kings and Simon in particular (he is ‘a dude’). Jade is single minded as so many hugely talented athletes are. But for the time being, the monster is still slowing her down. Simon reminds her that everyone eats; he doesn’t know anyone who doesn’t. And that is her cure. Jade nods distractedly. She’s thinking about going home. And running.

The pandemic made us revaluate so many things, focusing on our bodies and how we fit into our own imaginings of ourselves. And now there is an expectation for even the younger children to know what that means to them, who they are, even at the age of nine. We don’t know who the vulnerable children might be and what that final event is that might change anything for them. But there is now better recognition of the damage that eating disorders can do and how to seek help not just in the super-specialised eating disorders units like Simon’s. And although food is often a problem, it’s also a solution.

Serena Haywood FRCPCH MA has been a Consultant Paediatrician since 2003 and specialises in behavioural neurodevelopment at St Georges in London. She is also a Medical Examiner, Guardian of Safe Working Hours, Peer Supporter with BMA Wellbeing, GMC Associate Assessor and playwright. Listen to Unmasked, her dramatised podcast about the first COVID-19 wave.

*Names have been changed.



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