“We are lucky, we’ve never had to use a feeding tube for him,” says mum of two, Kelly, speaking about her son’s avoidant/restrictive food intake (AFRID) disorder.
The signs began to show in the crib - he would drink only an ounce or two of milk where other infants would have about four every few hours. He’d had to be weaned off breastmilk and started on formula at three months. By age three, the real battle for the plate had begun.
No! No greens. No ketchup. Not this and not that. Grounding him to the table-side wouldn’t work nor would trying to force feed him. There were tears all around.
Yet each time the Briton expat would visit a doctor, she would be told the same thing; “He’s just a picky eater. He’ll grow out of it.”
Kelly began to use strategically hidden foods to get her son the nourishment he needed and tried to hope for change; but she knew, she says, something was amiss. “The doctors said he’d grow out of it. But I could feel that it was different, because most kids might be picky, but they will eat when they're hungry … with a picky eater, as a parent you could maybe put some food in front like chips and peas, and you could say to them, well you're not leaving the table until you’ve eaten all of that and they'll sit down and force it down. Alex just never had that – he’d rather starve than eat something that he didn’t want to eat,” she recalls.
ARFID is an eating or feeding disturbance which results in persistent failure to meet appropriate nutritional and/or energy requirements associated with significant weight loss or faltering growth in children.
Dr Waleed Ahmed, Consultant Psychiatrist, Priory Wellbeing Centre explains that ARFID is more than just ‘picky eating’ and children with ARFID do not usually outgrow their problems. “Some studies show that up to 5 per cent of children are affected with ARFID. It is more prevalent in boys than girls. In ARFID the disturbance in feeding is associated with a lack of interest in food, avoidance based on sensory characteristics of food (for example smell, texture, etc.), or a fear of choking or vomiting. In clinical practice, we often see a combination of these reasons and the reasons do switch over time.”
Overwhelmed by flavour
Kelly noticed that her son likes bland meals – perhaps because the taste and texture overwhelm him. She explains: “One of the characteristics of AFRID is that they are super tasters. So things that he likes if it’s cooked in a slightly different way, even if it looks the same, he wouldn't eat it. The preparation of the cooking became very specific. It was more than just picky eating, it was just at a different level. We knew what he liked. And I would prepare those, and he would eat them in various different ways. So that's how we would vary his meal. So he would have chips one day, mashed potato another day … if it wasn't on his safe list of food, he just wouldn’t eat it.”
As years yawned by, meal times became even tougher – Kelly had a daughter only a year younger than Alex (name changed upon request), and her relationship with food bordered on the adventurous. “At home, with his sister, they would have the same kinds of meals, but she would have lots of vegetables as well. So if they were having fish fingers and mash, she would have a lot of vegetables on the side with that,” she recalls.
For Alex, there was a list of safe foods – discovered by trial and error – and all meals were just combinations of these dishes. “Generally, he has like 10 different meals – might be a duplication of a few things – but it’s basically chicken, steak, fish fingers, meatball and spaghetti but no sauce, cooked in different ways. But that’s all restricted now,” explains Kelly.
The past couple of years have been tough on Alex. Just as he was coming to the conclusion that he had a unique appetite and before he could navigate the social implications of it, COVID-19 stung the world; causing everyone to retreat into their homes, cutting down social appointments.
Why wasn’t it something that affected his life earlier?
It’s about numbers. “When they're quite young and going to birthday parties and stuff, then there's always chicken nuggets or junk food – and if there wasn’t, he just chose not to eat it. So you don't make a big deal of it when you're at a party because you don't want to embarrass him and also, there’s kids everywhere so it can go undetected,” explains Kelly.
She adds: “We just never made it a big deal of the kids’ choices because there are a couple of books that have been written on it and all of the advice is not to push them into eating.”
Return to normal life
When the cloud of COVID-19 lifted a little and the idea of bubble-group meet-up was floated, kids rejoiced – they’d see their friends, out of school, but at amusement parks or gaming arcades or for the latest movie. They all looked forward to the outing – all of them, except Alex. “He had such anxiety about going because of eating that he didn’t go. So at the moment, he's not in touch with any of his friends. And he's dropped out of school,” says Kelly.
There’s something about the despair that’s leeched into his relationship with his sibling, fracturing a once major bond. “I don't know whether part of that is to do with the fact that his sister is kind of flourishing and he's not, and maybe there's a little bit of a competition thing there because he's very competitive. I don't know, to be honest,” she sighs.
Perhaps it will improve with the medicines he’s been prescribed and the therapy he’s undergoing. Kelly hopes the therapy will help Alex make sense of his aversions. “It's hard to fast-forward and think of what his life will be like when he's working. Or living on his own – Alex doesn’t cook, he’s not able to eat some food, he’s got no interest in food at all. It's quite worrying how he's going to be able to mature when he doesn't put any importance on the food that is eating and making sure that he's looking after himself,” she says.
When Alex is going through an emotional tussle, he tends to restrict his choices – of late, he has taken to only eating nuggets and chips from McDonald’s. He eats this twice a day and almost nothing else. His pills are ground up and given to him in something sweet, and he’s lost a lot of weight. “At the moment, his weight plummeted and it’s a major issue for us. He needs to put on 7kg, we've made milestones, and if he puts on another 3kg, then he can do certain things. You know, it's a bit of having to take it step by step,” she says.
The weight of the world
It’s unfortunate that the whole family has felt the strain for some time now. “If we go on a holiday we would generally go somewhere where it's self-catering, so that we can go and buy food and bring it in and cook it for him the way likes. We went to Sri Lanka couple of years ago, and he literally didn't eat anything for the whole week that we were there except chips. It’s just heart-breaking to see and you know that you won’t be able to travel some places because it's so restrictive for him. We love to travel, and I absolutely love Asia. But we can't go there anymore. Because it's just not feasible. Generally, we just go back to the UK for a holiday now because he can get everything there,” she adds.
Yet, in discovering the name of the disorder, in learning that he wasn’t to blame for his eating habits, came relief. “Now, [after joining] all these support groups, [I see] there are so many parents out there struggling. And actually, according to some of the some of the information that's shared by other parents globally, [Alex] isn't extreme at all. In fact, we've been really lucky with the fact that he will eat something; there's a lot of kids or even adults who have to be tube fed. We have not been in that situation.”
The hope remains; meal time will get better.
Suspect your child has an eating disorder?
Have you noticed any of the following signs. If yes, consult a doctor immediately.
- Dramatic weight loss or consistently not achieving expected weight and height percentiles for age
- Avoiding eating certain foods, including getting very upset when encouraged to eat
- Severe restriction of kinds of foods eaten including accepting food only when it’s a certain texture, color, etc.
- Children often come up with plausible reasons for avoidance and will suggest alternatives that they will rarely comply with
- Lack of appetite or interest in food
- Reports consistent but vague gastrointestinal complaints around mealtimes that do not appear to have any cause
- Reports fears of choking and vomiting and thereby avoiding eating
- Difficulties concentrating
- Dizziness, dry skin, cold hands
- Abnormal blood tests – anaemia, low blood counts, abnormal hormone levels like thyroid
- Menstrual abnormalities in older girls
Share your story with us. Write in to firstname.lastname@example.org