ROCHESTER — At 14, the boy just seemed tired, but at 15 he was losing his hearing, and by 17, the patient was going blind.
He didn't look malnourished, but tests showed he was deficient in a host of nutrients. After running test upon test, his doctors asked the boy about his diet, whereupon they learned of something all children experience but most seem to outgrow: he was a fussy eater. Which is putting it mildly.
Frightened of certain textures, the boy had eaten only the same five foods for seven years: french fries, sausages, Pringles, slices of processed ham and white bread.
The case study, published in the latest issue of Annals of Internal Medicine and reported by doctors from an eye hospital in Bristol, England, gained wide attention as a case of "junk food" induced-blindness. But its authors specifically cited ARFID as a likely culprit, short for Avoidant-Restrictive Food Intake Disorder, a recently-recognized condition in the Diagnostic and Statistical Manual of Mental Disorders.
"It's not the same as anorexia nervosa, but the medical concerns about ARFID can be equally as severe as with anorexia nervosa," says Dr. Julie Lesser, child and adult psychiatrist at Rogers Behavioral Health in Minneapolis and an expert in the treatment of ARFID. "For ARFID, the selective eating is driven more by textures, or what they call 'food neo-phobia' — just not being used to a new taste sensation or texture, so people can get into a very restricted pattern of eating."
The childhood pathways to ARFID are many. They can include a general disinterest in food, one that leads to an inability to detect hunger. In other cases, ARFID begins with an unhappy episode of choking, one that triggers a vicious cycle of avoidance, anxiety and more restriction. Until recently, patients with ARFID seemed to escape the routine clinical dialogue meant to capture common pediatric health problems. For the parents of children with ARFID, many are often just trying to get through the day.
"The parents may have four children, three of whom eat completely normally, and only one is [highly picky]," Lesser says. "Over time, maybe they don't want to create a lot of conflict and stress over meals. So people tend to accommodate them, just to make sure the kids are eating something."
Complicating matters, many patients with ARFID do not look underweight, and unlike patients with anorexia nervosa, many will tend to express no heightened sensitivities about gaining weight, losing control over eating or their body image. For these patients with ARFID, it can be easy to get lost in the system. Over time, ARFID can begin to look like everyday anxiety over going places where a variety of foods will be eaten. Places like school.
"We get a lot of referrals for kids who have school avoidance," Lesser says. "One of the things we always look for is if they are underweight and it fits an ARFID pattern, one in which the parents are constantly having to remind the child to eat, the child won't eat at school, and they may have nutritional deficiencies."
Rather than attempt to get an underweight child to try new foods, Lesser says, the more successful approach for clinical programs that treat the condition is simply to help the child regain weight, then systematically use rewards and consistency to introduce new foods with the help of parents, a technique known as the Family-Based Method. Via this model, ARFID treatment programs can give parents the tools to broaden a child's palate.
"I think it's hard for parents to just change something like that without someone to be a collaborator with them on how to make these changes," Lesser says.
If the method sounds mundane, it can help reverse a condition with broad ramifications.
"One of our patients had gone through multiple tests with GI physicians because he felt tired all the time, had low vitamin D, he went hungry a lot," she say. "Sometimes kids end up living on supplements, so they may not have nutritional deficiencies, but socially it's impairing because they're not eating normal foods. They're drinking Boost or all those nutrient supplements."
Lesser recalls one patient who simply wanted to be able to eat pizza with his friends.
"He was totally normal, healthy weight and growing, but he couldn't eat solid foods. ... We just made a little hierarchy of what would be the easiest foods, up to his goal of pizza. By the end of treatment he was completely off supplements and eating all foods."
The lesson of ARFID, if there is such a thing, is that a child can look outwardly healthy and still be starving inside.
"It is helpful for clinicians to ask about diet and food variety when evaluating fatigue and other medical conditions," Lesser explains, "even if the patient is not underweight."
Even without vision loss.
"I must say, I've not had that happen in my practice," she adds. "But I'm in a situation where people are often coming early for treatment. In Minnesota, there's a high awareness of the need to make referrals if someone is falling off their growth charts or having social impairments."