ARFID ~ What the heck is it?

Avoidant/Restrictive Food Intake Disorder. The name seems semi self-explanatory. Someone who avoids or restricts the foods in which they digest. Right? Well, there's a little more to it then that. ARFID can be compared to anorexia because the disorder convinces you there needs to be limitations on what you eat but unlike anorexia it's not because you have any fears of being overweight or general distorted thoughts about your appearance. For ARFID to be considered, according to www.nationaleatingdisorders.org, there needs to be a feeding disturbance where the lack of interest displayed in the patient is not otherwise explained. So, there can't be a physical reason, like dysphagia for example, or a mental disability that can otherwise explain the food aversions. ARFID patients typically show significant weight loss or in the case of children may not grow at the same rate as their peers. Those suffering with ARFID will likely be dependent on feeding tubes or oral nutritional supplements. ARFID also plays a role in someone's ability to engage in relationships with those around them due to the fear that food causes for them. The person who is dealing with it may avoid social situations where food is present as they may prefer to isolate themselves while eating to avoid having to explain their choices. These actions may have a negative impact on their relationships as a result. Risk factors. So what makes someone prone to this disorder? People who are autistic or those with ADHD and intellectual disabilities are going to be more likely to experience eating difficulties. While picky eating is a pretty normal thing in childhood, when picky eating becomes severe, ARFID is also likely to rear it's ugly head. Many with ARFID also have an anxiety disorder and may be at high risk for other psychiatric disorders. More specific symptoms. A sensory diet is common where those with selective eating disorders tend to gravitate to textures and tastes that are similar. That familiarity creates a safe bubble for them to eat, even if it's limited to only crackers or yogurt. They may display a fear of chocking or vomiting, have sleep disturbances, frequent upset stomachs and trouble concentrating. Our life and how ARFID just seems to fit. So, when I was reading up on selective eating and came across the disorder, I felt like someone wrote the criteria specifically for our Alex. Never have symptoms ever hit every single mark before. His eating has gotten significantly worse over time. He was diagnosed with SPD (sensory processing disorder). He survives on pretty much strawberry pediasure along with his saltine crackers. He has a terrible gag reflux and is quick to vomiting when unfamiliar foods are attempted. Food chaining is often recommended in food therapies as it helps to build off safe foods a patient already has to expand their palate. This was something that was never successful for Alex and in fact doing food chaining caused more disruption in his world then anything. Things he had deemed safe prior to our attempts to introduce something new, he no longer trusted and we'd loose it. Other symptoms that I found that spoke to me... Alex often complains of having a tummy ache, he has trouble sleeping and will often sleep walk, his body temperature can be difficult to regulate, he is overly sensitive to sights and smells, gags and involuntarily induces vomiting, is easily tired and prone to illness that hits harder and longer then that of his siblings. So many pieces to the ARFID puzzle seem to paint the full picture as to what we are dealing with. Now, let me be clear, he has NOT been officially diagnosed by a physician as having this disorder quite yet. And I know, I shouldn't be googling this stuff and relaying on Dr. Google for a diagnosis but seeing it first hand, I have now been making a point of bringing up to his doctors that I read about ARFID and feel that it 1,000% matches up with what we are dealing with in hopes that someone will have the magic potion for us to allow him to recover. My goal is that by having some sort of idea of what his particular food monster is that I can better advocate for my child to ensure he is given the best possible care.

Our next steps. We had recently been given a referral to see a psychologist but when we were contacted by the facility we were going to seek treatment at, issues with our insurance company meant that the particular program was going to have to be put on hold. After calling around and trying to find a physician and program that would work with us and be best for him, there are plans in motion to get him in for an evaluation somewhere local soon. We hope that the puzzle is finally coming together so he can move on with recovery.

The information provided here is based on my own research of the disorder and is not intended to diagnose or treat. I am just a mom trying to advocate for my son and not a health care professional. If the symptoms and risk factors seem to match what you are dealing with too, please follow up with your primary care physician to discuss things further. Do not attempt to treat without the guidance of a trusted medical professional.