What is ARFID? The eating disorder that almost starved a 9-year-old boy to death

Of the list of eating disorders, ARFID may not be one you recognize, but it can be just as dangerous as more well-known conditions.

The Cleveland Clinic defines ARFID, or avoidant and restrictive food intake disorder, as a condition that limits a person’s food intake. It is recognized in the DSM-5 (the Diagnostic and Statistical Manual of Mental Illness of the American Psychiatric Association).

The disorder is characterized by intense fear and anxiety about foods and their specific qualities (such as smell, taste, and texture) or the consequences of eating, such as choking.

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Limiting food intake to an extreme level can lead to malnutrition and nutrient deficiencies, as 9-year-old Hannah from Los Angeles has experienced.

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

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

Long before Hannah began sharing her journey on camera, Michelle struggled with what she thought was simply a “picky eater.”

“I realized that this was much more than just a whim to eat. Obviously, this was tormenting her.”

Michelle explained that Hannah, who is the youngest of three siblings, ate very well as a baby until she was introduced to solid foods.

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

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But when Hannah turned 3, Michelle said she had begun to reject even the select foods she once ate.

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

Michelle, pictured here with her husband and three children, said Hannah’s case was “very different” to her eldest son, who is autistic and had difficulty eating as a newborn. (@myarfidlife)

Since Hannah was still growing normally, her doctors “weren’t too worried” and assumed that she would eventually stop being a picky eater.

After COVID-19 hitMichelle said Hannah’s eating got worse and she eliminated even more food.

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“It was a big struggle to get him to eat anything,” she said. “He had no interest in food and his growth started to slow down.”

Hannah’s doctors ran tests to see if there were any other health conditions, such as IBS or celiac disease. She was referred to other specialists, from endocrinologists to nutritionists.

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

Hannah, pictured with her mother Michelle, shared that she enjoys drawing, reading, writing and playing with slime. (@myarfidlife)

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

“I couldn’t stand being around food,” he said. “He couldn’t stand sitting at the table with us. He couldn’t stand the smell when I was cooking something in the kitchen.”

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

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“We were in a drive-thru and I asked (Hannah), ‘What would you like me to order?’ And she broke down at that moment and asked me, ‘Why does it make me so anxious every time you talk about food?'” Michelle recalled.

“Hearing those words… I realized that this was much more than just being a picky eater. Obviously, this was tormenting her.”

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 “very validating.”

“I remember saying to her, ‘She has very few foods she’s willing to eat. And one of them is Pringles with sour cream and onion, but they have to be in special packaging. She refuses to eat the Pringles that come in the package.’ .the large container. They have to come in small individual containers.'”

“And hearing his words: ‘This is so classic ARFID,’ was very comforting.”

According to one eating disorder expert, the “psychosocial interference” of ARFID can be difficult in social settings, such as school and parties. Hannah, pictured with her siblings, lives with the condition. (@myarfidlife)

The therapist first recommended nutrition. protein shakeswhich Hannah found difficult to digest.

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

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

“I don’t want to live like this anymore.”

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

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Michelle tried fun ways to get Hannah to drink the shakes, like timing her and seeing if she could beat her previous record.

Next, Michelle suggested recording a video of Hannah drinking her smoothie to send to her new therapist.

Hannah was immediately interested in how her therapist would respond.

Hannah says her famous catchphrase, “Here I come,” before grabbing a bite to eat in her videos. (TikTok/@myarfidlife)

Michelle then decided to share the video online to help clue friends and family into what Hannah was going through and to help explain why she couldn’t attend holidays or birthday parties due to the presence of food.

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Since that first post, Hannah and Michelle’s social media following has skyrocketed, with thousands of strangers cheering and motivating Hannah.

“Hannah has grown a lot physically and emotionally. Her confidence has skyrocketed,” Michelle said. “She’s a completely different kid.”

“There’s curiosity, motivation and excitement; there’s definitely still a lot of anxiety, but she’s getting over it.”

Hannah and Michelle are pictured wearing “Here I Go” t-shirts, which are for sale to help promote ARFID awareness. (@myarfidlife)

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

“Since we started our page, many people have discovered that this is what they have dealt with their entire lives,” Michelle said.

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

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

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

Hannah shared that she is proud of her continued bravery.

“I feel good,” he said. “I’m very energetic today.”

Tips to overcome ARFID

During her sessions, Hannah undergoes exposure therapy and psychotherapy.

“We do breathing exercises and coping skills,” he said. “We also tried different foods.”

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Taylor Rae Homesley, executive director of the Atlanta-based Emily Program Eating Disorder Treatment Center, works with ARFID patients.

She shared more details about the condition in an interview with Fox News Digital.

While symptoms can vary, limited food intake based on texture or food group is a prominent sign, one expert said. (iStock)

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

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

1. Fear of consequences

“I’m afraid of vomiting, I’m afraid I’m going to get stomach pain, I’m afraid of drowning,” the expert listed as examples.

2. Lack of interest in eating or eating

“These are kids and adults who just aren’t motivated by food,” he said.

“They’re the ones who can be playing outside for hours and hours and not think, ‘It’s time to eat.'”

3. Avoidance of foods based on sensory characteristics.

“These are kids and adults who are very limited in what they eat because of those sensory things,” Homesley said.

“They may have aversions to the taste, texture, smell, or temperature of foods.”

“(ARFID) should be treated differently and recognized as a different eating disorder,” said one specialist. (iStock)

“Many of our ARFID patients are what we consider super tasters,” the therapist added. “They taste bitter tastes more intensely than the rest of us.”

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

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

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“There is no help available and it is very unfortunate because ARFID is lifelong and is something that requires treatment,” he said.

“I feel like bringing the community together and using our voices (is important) for people to see that there is a need.”