A tragic story out of England involving a teenager rendered permanently blind because of a severe nutritional deficiency is making the rounds this week. People, even children, go blind all the time unfortunately, so it may seem odd that there would be such coordinated coverage of this particular case by all the major news outlets. But there are some unique aspects to the child’s history that had these journalists salivating.
According to the authors of the Annals of Internal Medicine case report, the 17-year-old boy had an extremely limited diet:
He had a daily portion of fries from the local fish and chip shop and snacked on Pringles (Kellogg), white bread, processed ham slices, and sausage.
Many of the news reports have referred to the 17-year-old as “picky” or “fussy” about what foods he would eat, with one article even claiming that he was “blinded by junk food”. To be fair, that was essentially the title of the case report that these articles are based on. And everyone knows that “junk food” is bad for you, right? Most of the articles even feature pictures of French fries or potato chips to help focus the readers attention on the dastardly and muttly culprits.
As a pediatrician, I work with many families who become overly concerned about their child’s health because of something that they have hear or read in the news. While unintentional I’m sure, some articles discussing this case may result in undue anxiety. One example of this is the opening paragraph of the coverage in Ars Technica, which involves a joke in poor taste about using the fear of blindness to deal with “picky eaters”:
In the past, parents may have tried to coax their picky eaters to dinner with misguided reminders of starving children—or perhaps letting them imitate farm animals. But, the parents of today now have a scarier prompt.
Parents, like all humans, aren’t always rational. Yes, this is a joke. A very bad joke. But it is at the beginning of an article discussing the terrible outcome of what is largely being described as picky or fussy eating. Normal picky eating behaviors in childhood have no place even being mentioned in this context. Maybe it’s a bit of a stretch, but I worry that this may be confusing to some readers. And while the article goes on to provide good information, it isn’t until the final paragraph.
As is often the case, a lot of the media coverage lacked nuance, and an opportunity to educate the public about a severe and recently recognized eating disorder was largely wasted. What the patient suffered from was far more than simply being a fussy eater. He likely experienced extreme anxiety, potentially even the fear of death, at the mere thought of eating most foods.
Blinded by junk food?
The child in question first presented with symptoms of fatigue related to nutritional deficiency at the age of 14. He was found to have anemia caused by a vitamin B12 deficiency, which was ultimately blamed on “fussy eating” after a limited work-up for causes of poor intestinal absorption was performed. He was prescribed B12 injections and given advice on proper diet. This was a missed opportunity to recognize and properly manage his eating disorder.
By age 15, he had developed hearing difficulty and unspecified “visual problems”, and was evaluated by both an ENT surgeon and an ophthalmologist but no underlying cause was found. Another missed opportunity, particularly given the history of known issues with his diet and the fact that he had not been adherent to the B12 injections for undisclosed reasons. After 2 years of progressive vision loss, he was seen by a neuro-ophthalmologist and diagnosed with permanent optic neuropathy.
Optic neuropathy, which is the term for essentially any injury to the optic nerve, has a long list of potential etiologies but is very rare in the pediatric population. A thorough work-up involving laboratory and genetic testing, neuroimaging, and intestinal biopsies was completed, and the cause was narrowed down to multiple severe nutritional deficiencies. In particular, vitamin B12 deficiency was again found and believed to be the primary cause of the patient’s visual loss. It was at this point that his extremely restricted food intake came to light.
Avoidant Restrictive Food Intake Disorder
This unfortunate child was not blinded by junk food. He suffered from a recently recognized eating disorder known as Avoidant Restrictive Food Intake Disorder, or ARFID. The concept of a pathologically restrictive diet isn’t new, of course. It’s more fair to say that the ARFID is a new label for the older “Selective Eating Disorder”, complete with a better description of the presentation, that was incorporated into the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders in 2013.
Patients with ARFID are not just picky eaters. They avoid or restrict themselves from certain foods because of severe anxiety related to eating them, or because of extreme emotional discomfort related to certain food textures. Many of these patients become physically unable to eat many foods because of gagging and vomiting that occurs when attempting to do so. Some experience an intense fear of choking to death when even thinking about eating certain foods.
This degree of avoidance and restriction of foods, by definition, results in physiological harm in addition to the adverse effects on psychosocial functioning. Failure to maintain appropriate weight isn’t as common as it is with the more well known anorexia nervosa, but it can occur. As in the case discussed above, nutritional deficiencies are also a major concern. Also by definition, ARFID does not involve a disturbance in how the patient experiences their body. They don’t have concerns about being overweight.
Here is a description of a typical case of ARFID. I have admitted several extremely ill patients with this condition to the hospital and each one has been hard to witness and challenging to treat. It takes involvement from medical doctors, particularly experts in adolescent medicine and psychiatry, as well as dietitians and social workers. It is not unusual for patients to require anxiety medications with each meal in the early stages of treatment, just to help correct nutritional deficiencies and stabilize organ function, before long-term cognitive behavioral therapy can be initiated.
The authors, the lead being an ophthalmologist, appeared to be more into the discussion of optic neuropathy than the patient’s ARFID, but at least they do mention it in passing at the very end. Like much of the news coverage, however, they focused on the fact that his diet consisted of mostly “junk food”, a nebulous label that often serves to demonize food and the people consuming it rather than to educate them on healthy dietary choices. This was evident in the press release:
The researchers concluded that the patient’s ‘junk food’ diet and limited intake of nutritional vitamins and minerals resulted in the onset of nutritional optic neuropathy. They suggest the condition could become more prevalent in future, given the widespread consumption of ‘junk food’ at the expense of more nutritious options, and the rising popularity of veganism if the vegan diet is not supplemented appropriately to prevent vitamin B12 deficiency.
That seemed like an unnecessary cheap shot at veganism given the context of this case.
The news article I just linked to has a giant picture of French fries, but while French fries are a convenient scapegoat that makes this whole thing cognitively easier to digest, demonizing specific foods is not what we should be focusing on. The focus should be on mental health as it relates to eating, and how systemic factors can lead to a child like this going so long without appropriate help. We should be talking about how this was a preventable tragedy, not about junk food and veganism.
Popular media have highlighted the risks for poor cardiovascular health, obesity, and cancer associated with junk food, but poor nutrition can also permanently damage the nervous system, particularly vision.
This wasn’t simply a case of “poor nutrition”. The child was avoiding a wide variety of foods necessary for complete nutrition because he was suffering from untreated severe anxiety. This could have happened even if the foods he could eat weren’t classic junk foods.
I highly doubt that there are many people out there who would not recognize his diet as extremely high risk. So this case report raises many more questions than it answers. How did this kid slip the cracks so egregiously? Why was he not admitted to a hospital for inpatient management when he presented with blatant ARFID and associated hearing and vision loss two years prior to the involvement of the case report authors?
Ironically, approaching a case like this as a consequence of the “junk food” rather than the ARFID induced avoidance of foods necessary for vital organ function might actually play a role in causing an eating disorder in some people. What people define as a bad food is often subjective and often not based on science. Gluten, for example, is now frequently seen as something to avoid even if celiac disease isn’t a concern.
When we demonize particular foods rather than encourage healthy diets it fosters an environment where excessive fear of unhealthy foods can result in disordered eating. I’ve seen many patients who have, over time, added more and more “unhealthy” foods to their list of things to avoid until they are left with a very limited diet. This has come to be known as orthorexia, and is widely accepted even if it hasn’t yet been officially recognized as an eating disorder.
Conclusion: A missed opportunity to discuss disordered eating
This was a preventable case of blindness in a pediatric patient. Somehow this child didn’t get the medical care he should have. His dietary restrictions, caused by a severe eating disorder and not “fussy eating”, should have been recognized and managed prior to his loss of vision. Rather than demonizing the foods he ate, however, we should be focusing on preventing children like this from slipping through the cracks.
One important step in that process is awareness of ARFID as an entity. The overwhelming majority of picky eaters do not have ARFID and will never develop it. But if the behaviors seem extreme or persistent, talk to your child’s pediatrician or family doctor about it. The National Eating Disorder Association is a great resource as well.