When the headline of “Blinded By Junk Food” hit the internet last year, parents everywhere suddenly became aware of a disorder called ARFID. The news article identified a 17-year-old boy who, according to the story, lost his eyesight due to being a picky eater or “fussy” eater. Turns out the boy has ARFID. So what is ARFID? How come we’ve never heard of it until now? And can it really make your picky eater go blind?
Parents naturally spend a significant amount of time thinking and worrying about their child’s nutritional needs and intake. It is a large part of the parenting gig, especially in the early years. If you feel overwhelmed or unsure about your child’s food intake, reach out to Portland Pediatric and Family Nutrition. From newborns to teens, we love to help.
What Is ARFID?
ARFID stands for Avoidant Restrictive Food Intake Disorder. It is an eating disorder that does not include the body dysmorphia component that is typical in all other eating disorders. In 2013, ARFID replaced the DSM-5 diagnosis of “Feeding Disorder of Early Childhood and Infancy.” That diagnosis only applied to children under six years old. ARFID has no age limits.
What Are the Symptoms and Signs of ARFID?
How can you determine the difference between a picky eater and true ARFID? The DSM-5 explains that ARFID is an eating or feeding disturbance that includes persistent failure to meet appropriate nutritional and/or energy needs associated with one or more of the following:
- Significant weight loss, inability to achieve expected weight gain, or faltering growth in children
- Significant nutritional deficiency
- Dependence on enteral feeding or oral dietary supplements
- Marked interference with psychosocial functioning
The criteria go on to explain that the eating disturbance is not due to a lack of available food or cultural practices. It also does not occur solely in conjunction with anorexia nervosa or bulimia nervosa. And there is no evidence of a disruption in body image or how the person experiences their body.
Further diagnostic criteria state that the condition does not stem from a concurrent medical condition and is not better explained by another mental disorder. When ARFID is present along with another mental health diagnosis, its severity often goes beyond what would be typical for the other disorder.
Not all children fall into this specific diagnosis spelled out in the DSM-5. In our practice, we see these common characteristics for our patients who struggle with ARFID and related eating behaviors:
- High anxiety around new foods
- The list of favorite or acceptable foods dwindles, often to fewer than 20 foods
- Missing food groups
- Missing textures of foods
The Sensory Factor
The sensory component of ARFID appears to be a critical and significant piece that sets these children apart. They often have a heightened sense of smell and taste. And their tactile awareness of food in the mouth is more sensitive. Some patients can even distinguish a brand change of food by noticing the different feel of the grit or small particles.
The sensory system does much of its development in the last few weeks in utero, which is why premature babies often struggle in this area of sensory processing. Their brains respond differently to sensory input, and they process it in a non-typical way.
There may also be a genetic piece of the puzzle with this eating disturbance. Some children are sensitive enough to earn the moniker of “super-tasters.” If parents were very picky and have similar taste aversions, they could pass the so-called super-taster gene to their child.
What Are the Risks with ARFID? Can My Child Really Go Blind?
In the story that started the widespread fear of nutrition-induce blindness, the young man was living on a diet that consisted of the following:
- French fries
- Pringles brand chips
- Processed ham slices
- White bread
It doesn’t take too much nutritional know-how to see a problem here. As a result of this young man’s dietary choices, he had a dangerous vitamin B12 deficiency and diagnosed with optic neuropathy. At age 14, doctors prescribed B12 shots to boost his levels. When the injections lapsed, his hearing and vision took a hit.
Children who experience ARFID often struggle with many physical concerns that arise from vitamin and mineral deficiencies. And in addition, they may have social and emotional issues that develop, as well. They may endure depression and anxiety and an inability to join in with friends and family.
How Do You Treat a Picky Eater with ARFID?
Experts have identified three primary sub-groups of ARFID. Patients may experience:
- Low appetite or lack of interest in eating
- Avoidance based on the sensory characteristics of food
- Concern about aversive consequences of eating, such as choking or vomiting
When we identify which category is the best fit for a child, then we can guide our treatment accordingly. Our success in managing ARFID for a patient relies on the child’s age and their ability and desire to participate in treatment.
The foundation of treatment for each child with ARFID is the same as it is for any picky eater. It’s crucial to set a positive feeding relationship around food that includes committing to more family meals. Family meals are an excellent opportunity for positive food exposures for the child. Food should never be forced on children. That method triggers anxiety, which zaps the appetite and prevents the desire to try new foods.
For children under seven years old, we focus on seven goals and habits:Support the parents in their feeding relationship.
Remove anxiety at meals.
Set up a schedule for meals and snacks.
Increase exposures at home and establish a plan to do so.
Help parents understand food chaining when introducing new foods.
Review food records and consider a multivitamin to help make up for deficiencies.
Consider feeding therapy with a pediatric OT who specializes in feeding.
For older children, teens, and young adults, the treatment is different. The research indicates that children with ARFID will need close to 30-50 food exposures to accept and tolerate new foods. For these older patients, I incorporate homework that they are in charge of during their time working with me.
We treat it like a science experiment to learn about new foods, which includes daily exposures and bites and observations of their senses. Often the first few would be done in our office. Steps include:
- Involve the child in daily homework by identifying their internal motivators.
- Establish a hierarchy of foods the child and family want to eat.
- Discuss food satisfaction and ranges of preference with foods on a scale from 1-10.
- Let the child or teen decide the easiest food to start with for their homework.
- Address the anxiety around trying new foods and refer to a pediatric therapist for additional support.
Don’t Lose Hope. Treatment Helps!
Desensitization to new foods is slow. But with encouragement, the process becomes easier.
When it comes to ARFID, you are looking at a marathon, not a sprint. But it is well worth the journey! One mom shared that her son’s “ability to eat more foods has truly changed our lives, and I feel so much less worried over his nutrition.”
I have worked with her family and her nine-year-old son for slightly over a year now. Before we worked together, the boy’s diet consisted of a handful of foods, mainly a brand-specific soup in a few flavors. The family couldn’t even travel without a suitcase of soup since they had nothing else to feed him.
After five months of us working together, he was able to travel to Mexico with his family without the suitcase of soup. He could eat a handful of new foods that included pizza and some breakfast buffet options like eggs, bacon, and pancakes. He has now gained nearly 10 pounds and eats the same food as his family at most of their meals. The child can tolerate meats, vegetables, pasta, and new fruits. Overall, he is healthier and more confident in trying new foods.
If your family struggles with a child or teen with ARFID, give us a call. Blindness is the extreme result that grabbed the headlines. But it certainly doesn’t have to be your child’s story. I’d love to discuss treatment options to help your child reduce their anxiety at meals and eat a more balanced diet.