Not just picky eating: The little known eating disorder parents need to be aware of

Picture: Getty Images
Picture: Getty Images 

Picky eating is a struggle many parents grapple with at some point.

Whether it's a sudden rejection of vegetables or refusing to eat more than a few bites of dinner, it's generally a phase and not too concerning.

But when "picky eating" become restrictive eating, and a child regularly opts to go hungry rather than eat certain foods, it can indicate something more serious.

Such as with children who have the relatively newly identified Avoidant/Restrictive Food Intake Disorder (ARFID).

The condition was highlighted last month, when UK teenager Ben Simpson, 15, was reportedly "cured" of the condition which had seen him eat only Richmond brand sausages, following hypnotherapy.

But for many parents struggling with the anxiety based eating disorder, there is no quick fix and even identifying the condition can be a struggle.

For Melbourne mum Christine, finally being given a diagnosis for her daughter's severely restricted eating came as a relief.

The mum had experience with eating disorders, as her eldest daughter had earlier been diagnosed with anorexia and instinctively knew it was more than just "picky eating".

While her younger daughter, now 18, was a good eater as a toddler, by primary school she had begun to cut back on the foods she would eat.

Advertisement

By 10 she was eating only the "beige carbohydrate foods" of white bread, chicken nuggets and chips. And only if they were the correct brand.

Describing asking her to eat any other foods as like "asking her to jump pout of plane without a parachute", her daughter was "frozen with fear" if new foods were offered and even the presence of the food would be frightening.

Her daughter also could not cope if two different foods touched on any of their plates, as they would then be "contaminated". The "rules" could change daily as the condition constantly evolved.

When Christine took her to be assessed, the term ARFID had not yet been coined and it took a long journey until she was diagnosed in 2013.

"It was such a relief, for a parent to know they're not going crazy, that there is something different about your child and it's a recognised illness that needs attention," she said.

"That you haven't done something wrong, it's not in your imagination and it's not your parenting."

Christine said the condition had affected not just her daughter's physical health, but also her wellbeing, saying socialising and school camps were fraught due to the "unsafe" foods they often involved and her daughter became the target of bullies.

"It affects the self-worth of the child growing up, because they're always seen as different or a freak or fussy, or they're labelled as difficult or attention seeking or problematic," she said.

"And it affects the parents because it is absolutely exhausting, frustrating and worrying. And the parents can have a sense of guilt and shame, of 'why me, why my child?', or worrying, 'are people judging me'. People can be very cruel, if your child is smaller than average people make comments."

For Christine, it has been a long process of working with OTs and dietitians to "re-program" her daughter's brain to be less fearful of foods and cautions there's no quick fix. She urges parents to reach out to their GP, and if they have not heard of ARFID, to ask for a referral to another professional.

As the condition is so newly recognised, there are no current evidence-based treatments available, however cognitive behavioural therapy is being piloted as a potential treatment option.

Dr Ranjani Utpala – Director of Clinical Services at The Butterfly Foundation said because the condition was only formerly recognised in 2013, many people are either going undiagnosed or have been misdiagnosed.

Unlike other eating disorders, Dr Utpala said there is no focus on weight loss or body image. While it most commonly develops in children, it can also develop in adolescents.  

Every case of ARFID is different, but many with ARFID also have a co-existing anxiety disorder and those on the autism spectrum or who have ADHD may be more predisposed to the condition.

Signs to look out for can include drastic weight loss, abdominal pain, constipation, cold intolerance, fatigue and/or excess energy, as well as gastrointestinal issues, especially around mealtimes which don't have a known cause.

A narrowing or a preferred range of foods over time, a lack of appetite or interest in food, fears around vomiting or choking, as well as difficulties concentrating, anaemia and sleep problems can also be signs for parents to be aware of.

Dr Utpala said the misdiagnosis and lack of broad awareness of the condition can leave families struggling with the condition for extended periods of time without knowing what it is. Recognising early signs and symptoms and securing a diagnosis can impact on the severity and longevity of the condition and she urged parents to raise any concerns early on with their GP.

"The biggest challenge for a family who has a child experiencing ARFID may be that their child is not consuming the essential nutrients they need to function, let alone grow and develop," Dr Utpala said. 

"Lack of essential nutrients and nutrition in a child may result in serious medical consequences and can also lead to failure to thrive (FTT) in young children."

If you or someone you know needs help for an eating disorder, contact The Butterfly Foundation support line on 1800 33 4673 (1800 ED HOPE) or email support@thebutterflyfoundation.org.au.