Little-known eating disorder nearly starved a 9-year-old: ‘It was bothering her’

From the list of eating disorders, ARFID may not be one you’re familiar with – but it can be just as dangerous as more well-known conditions.

ARFID, or avoidant restrictive food intake disorder, is defined by the Cleveland Clinic as a condition that restricts a person’s food intake. Recognized in DSM-5 (Diagnostic and Statistical Manual of Mental Disorders by the American Psychiatric Association).

The disorder is characterized by intense fear and anxiety about food and its specific qualities – such as smell, taste and texture – or the consequences of eating, such as choking.

Restricting food intake to an extreme level can lead to malnutrition and nutrient deficiencies, which is what 9-year-old Hannah from Los Angeles experienced.

Fox News Digital spoke with Hannah and her mother, Michelle (who chose not to reveal their last name), about their journey with ARFID, which has included a prominent social media presence.

On Instagram, the duo has 1.5 million followers. Their TikTok account (@myarfidlife) features videos of Hannah bravely trying new foods, which have racked up millions of views among nearly 460,000 followers.

Long before Hannah started sharing her journey on camera, her mom struggled with what she thought was just a “picky eater.”

Michelle said Hannah, the youngest of three, was a “big eater” as a baby – until she was introduced to solids.

“She would protest and spit the food out, or take it out of my hand, or turn her head in the other direction,” she said — all “fairly common” behaviors among children.

But by the time Hannah turned 3, Michelle said her daughter started rejecting even the choicest foods she used to eat.

“It was very frustrating for us because she was already so limited in what she was willing to eat,” she said.

Since Hannah was still growing normally, her doctors “weren’t too concerned” and assumed she would grow out of careful feeding.

After COVID-19 hit, Michelle said Hannah’s eating took a turn for the worse and she eliminated even more food.

“It was a huge struggle to get him to eat anything at all,” she said. “She had no interest in food and her growth started to slow down.”

Hannah’s doctors ran tests to see if she had another health condition, such as IBS or celiac disease. She was referred to other specialists, from endocrinologists to nutritionists.

Hannah was also seeing a nutritional therapist, which caused “a lot of stress and anxiety,” her mother noted.

Doctors instructed Michelle to continue offering Hana food when she was hungry, but her daughter’s condition only worsened.

“She couldn’t handle being around food,” she said. “She couldn’t bear to sit at the dinner table with us. She couldn’t stand the smell when I was cooking something in the kitchen.”

As Hannah grew older, she did not escape the condition, but was able to verbalize her inner struggle.

“We were on a trip and I asked him [Hannah]’What would you like me to order?’ And she broke down at that point and asked me, ‘Why does it make me really anxious every time you talk about food?'” Michelle recalled.

“Hearing those words… I realized that this was much more than a healthy diet. It was definitely bothering him.”

Seeking help and ‘validation’

Michelle decided to seek help from a mental health care professional and found a therapist who specialized in ARFID. She said their first conversation was “so validating”.

“I remember saying to her, ‘She has very little food that she is willing to eat. And one of the snacks is yogurt and onion Pringles, but they have to be in a separate package. She refuses to eat the Pringles that come in the big container. They should come in small individual containers.’

“And hearing the words from her — ‘This is so classic ARFID’ — was so validating.”

The therapist initially recommended nutritional protein shakes, which were difficult for Hannah to stomach.

But Hannah, who was extremely underweight, told her mother: “I don’t want to live like this anymore.”

“She she was at risk of needing a feeding tube,” Michelle told Fox News Digital. “She fell off the growth chart and she wasn’t gaining weight. She wasn’t growing in height.”

“She just wasn’t getting the nutrition she needed. She was very weak, lethargic and slept a lot.”

Michelle tried fun ways to get Hannah to drink the shake, such as timing it and seeing if she could beat her previous record.

Michelle then suggested making a video of Hannah drinking her shake to send to her new therapist.

Hannah was immediately interested in how her therapist would respond.

Michelle then decided to share the video online to help friends and family know what Hannah was dealing with and to help explain why she was unable to attend parties or birthdays due to the presence of food.

Now 9, Hannah is using her platform to spread awareness about ARFID and share tips she learns in therapy.

“A lot of people since we started our site have found that this is what they’ve been doing their whole lives,” said Michelle.

“It’s so nice to meet other people who can understand each other and share stories.”

Hannah added that the encouragement she gets online helps motivate her to try new foods.

“It makes me really happy because I know I’m helping other people,” she told Fox News Digital. “And I’m helping myself too.”

Hannah said she is proud of her continued bravery.

“I feel good,” she said. “I’m really energetic today.”

Tips for Overcoming ARFID

During her sessions, Hannah undergoes exposure therapy as well as talk therapy.

“We do breathing exercises and coping skills,” she said. “We also try different foods.”

Taylor Rae Homesley, executive director of the Emily Program’s Atlanta-based Eating Disorder Treatment Center, works with ARFID patients. She shared details of the condition with Fox News Digital.

Since ARFID was coined as a “new term to describe something that’s been around for a long time,” Homesley said it has brought more awareness to the condition and how best to treat it.

There are three types of ARFID symptoms that parents should look for in their children, according to Homesley.

1. Fear of consequences

Examples are: “I’m afraid I’m going to get stuck, I’m afraid I’m going to have a stomach ache, I’m afraid I’m going to suffocate,” said the expert.

2. Lack of interest in eating or food

“These are kids and adults who just aren’t motivated by food,” she said. “There are those who can play outside for hours and not think: “It’s time to eat now”.

3. Food avoidance based on sensory characteristics

“These are children and adults who are very limited in what they eat because of those sensory things,” Homesley said. “They may have an aversion to the taste, texture, smell or temperature of the food.”

“Many of our ARFID patients are what we consider super-sniffers,” the therapist added. “They taste bitter tastes with a higher intensity than the rest of us.”

Treatment is still being developed for ARFID, but methods such as cognitive behavioral therapy have proven helpful, according to Homesley.

Michelle noted that ARFID needs “a lot more awareness” and community building, which led her to start the nonprofit ARFID Awareness.

“Help is not readily available and it’s very unfortunate because ARFID is lifelong and something that requires treatment,” she said.

“I love bringing the community together and using our voice [is important] so that people can see that there is a need.”