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When Anxiety & OCD Starve our Kids: ARFID and Restrictive Eating

There is nothing worse than watching your child starve to death. It can creep up slowly or happen overnight. Meals are missed. Favorite foods are no longer craved. Plate after plate, meal after meal goes untouched. Perhaps initially you chalk it up to “picky eating” but then you realize it is something much more. Welcome to the world of Avoidant/ Restrictive Food Intake Disorder, also known as ARFID.

In this week’s AT Parenting Survival Podcast I am talking all about what issues cause ARFID and what parents can do to help their child.

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ARFID used to be called Selective Eating Disorder (SED) in the DSM-IV (The Diagnostic and Statistical Manual of Mental Disorders).

In the latest edition, The DSM-V renamed Selective Eating Disorder to ARFID and provided the following diagnostic criteria for it:

A. An eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:

1. Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
2. Significant nutritional deficiency.
3. Dependence on enteral feeding or oral nutritional supplements.
4. Marked interference with psychosocial functioning.

B. The disturbance is not better explained by lack of available food or by an associated culturally sanctioned practice.

C. The eating disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.

D. The eating disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder. When the eating disturbance occurs in the context of another condition or disorder, the severity of the eating disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention.

So what does all this mean? Not much. Unfortunately it is a catch-all diagnosis that can mean very different things for each child. You and I can both have a child with ARFID and yet be dealing with two completely different issues.

Here are some of the most common issues that can cause ARFID:

SENSORY ISSUES

Some kids have sensory issues. These sensory struggles can impact eating. Lumps, bumps and mixed textures can make these kids gag. Parents will often see these behaviors develop as the child transitions to solid foods.

Kids with oral defensiveness will avoid foods that cause sensory overload. Unfortunately this can be the majority of food!

Typically this type of issue is best dealt with through Feeding Therapy with a Pediatric Occupational Therapist or a Speech & Language Pathologist that address the sensory struggles related to food.

My oldest child had intense sensory issues and it drastically impacted her feeding. I watched as her little body refused to grow and her mouth refused to eat. Her pediatrician promised me kids “can’t starve to death” and yet that is exactly what was happening.

Once she was diagnosed with Failure to Thrive, I knew I had to do something. I found a feeding therapist to start working with her. After I learned the approaches to take with my child, I started working with her directly.

She is now a teenager and is thriving – but when I was in the throes of it I worried she’d never be able to eat like a normal child.

It is helpful to learn the tools to help your child overcome their sensory struggles.

If you are looking for online support, I would highly recommend Alisha Grogan and Wendy Bertagnole’s online classes on sensory solutions for kids. Their classes will arm you with all the skills you need to better equip your child to cope with their sensory issues. They’re awesome. I am an affiliate for their classes, but honestly, it is only because I believe in their work and their methods.

To learn more visit their site by clicking here. Here is a video about the class:

Moving out of the sensory world, we enter the world of anxiety and OCD. This is my world. It is where I live. It is where I teach. It is my home – for better or worse.

Let me talk to you about the many ways anxiety and OCD can make our children refuse to eat – even though they are starving.

FEAR OF THROWING UP

Some kids have Emetophobia, the fear of throwing up. Unfortunately for many of these kids, this fear directly impacts their eating. Some kids worry if they eat they will throw up. Some kids worry that if they get “too full” they’ll get sick. Other kids just feel nauseous all the time and it directly impacts their appetite. (I made a kids Youtube video to help kids with this issue. Click here to watch).

FEAR OF CHOKING

Many kids with anxiety have a fear of choking. They get so consumed with this fear that they start to restrict what types of foods they eat. This can start with eliminating chewy meats but the restrictions can pick up momentum from there. Some kids get so fearful they eventually go on a liquid diet.

FEAR OF GETTING SICK

Kids with anxiety and OCD can worry they might get sick from their food. This might be due to germs, expired food or contaminated food that can lead to food poisoning.

INTRUSIVE THOUGHTS

Kids with OCD will have irrational fears around their food. This can be almost anything, but here are some examples. They might be fearful someone poisoned their food, even though they know that is not rational. They might be fixated on what is different about their food (black specks, weird taste, different texture). They might see a face in their food or worry about if the food was once alive. With OCD an intrusive thought can be just about anything. I made a kids YouTube video to help kids with intrusive thoughts. Watch it here.

FEELINGS OF DISGUST

Kids with OCD can sometimes have an overwhelming feeling of disgust. Kids with ARFID will randomly be disgusted by their food. This can be due to how the food looks, how the food feels in their mouth or how the food smells. There is often no rhyme or reason for this feeling.

PANDAS/PANS

Before we complete our list it is important to mention PANDAS and PANS. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and PANS is Pediatric Acute-onset Neuropsychiatric Syndrome. This is when an infection caused by Strep or another autoimmune disease cause a series of symptoms that include tics, OCD symptoms, anxiety and commonly, restrictive eating. To learn more about the signs and symptoms of PANDAS/PANS click here. To listen to my interview with Beth Maloney, the author of Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD and A Childhood Interrupted: The Complete Guide to PANDAS and PANS click here.

Since restrictive eating is a common symptom of PANDAS/PANS it should be ruled out if your child has ARFID.

So now that we know what causes the problem, how does a parent go about fixing it? Well, it is not that easy. Trust me, I know.

14 years ago I was barely staying afloat coping with my daughter’s SPD (Sensory Processing Disorder) that severely impacted her eating. Fast forward 14 years and I am now dealing with round two with child #2 – only this time we are in the world of anxiety and OCD (with a side dish of PANDAS/PANS just to complicate matters even further).

For starters, don’t wait to get in with a child therapist who specializes in anxiety or OCD. If you need help finding one check out these articles.

Also, the International OCD Foundation has a great database of providers listed by state. Check it out here.

After you have some professional help, you can get a jump start by doing a few things:

#1 Make a List of Go-To Foods

I was pretty sure my child only ate goldfish and apple juice. Seriously. But when I sat down with him I realized that he also would eat apples, nuts, bread, chicken fingers and bananas. I also learned he would be okay with ketchup. The list started to grow. Bread with ketchup started to look like almost a normal sandwich. We started to develop a list of foods that could go together and make meals. It was a very short list at first, but it was something to look at when I felt frustrated.

I found myself putting a bowl of goldfish in front of him without a thought. It became a routine. A habit. Once I had my list I would force myself to look at the list, even though I thought I knew it. I would pick something different from the list and offer it to him. I was often surprised that he would be receptive to the offer. This broke us both out of this routine.

#2 Offer New Foods – Even When You Know the Answer is No

For many months I gave up. I felt hopeless. Protein drinks and smoothies were quickly rejected. I gave him his go-to foods and went on with my day, silently hoping he was getting enough sustenance.

Eventually I decided to start Round #2 and made a stab at working on the problem again. This time I offered him foods I knew he would never eat. 1% of the time he would shock me and say yes. I started to nonchalantly offer him foods along with his siblings. The less I made it a big deal, the more likely it was he might accept the offer. It was still rare, but it did happen.

#3 Don’t Go at it Blind – Make a List and Rank Food

I am a bit of a list maker, I’ll admit. So why not with ARFID. I made an Excel spreadsheet of foods that he would eat, foods that he would sometimes eat and foods that scared him. I color coded them green, yellow and red.

In the red column I put numbers next to the food. The higher the number on a 1-10 scale, the scarier it was for him to eat.

This list helped give me a road map of where we needed to go. It also helped me see progress or set backs.

#4 Exposure Challenges

A big part of OCD treatment is Exposure Response Prevention (ERP). In fact, it is the only evidenced-based treatment for OCD. I use it all the time in my practice, but I initially found it very hard to use at home. How could I force my child to eat something they didn’t want to eat?

I got some bad advice from other therapists. “Make him eat it.” “Punish him.” I came to realize that even among my mental health peers, I was alone.

For a long time I did nothing. I was too scared to make eating an issue. I celebrated every crumb that child put in his mouth. Did I really want to push the envelope?

Finally our communication got much better. He started to open up and talk about his fears. This helped tremendously, as I was able to get insight into his OCD. I was also able to help him understand how OCD was lying to him. I made kids Youtube videos to help kids understand OCD and how it lies to them.

We started to do exposures (if you don’t know what they are or how they work – check out this podcast or read this article). I let him pick the food from his list. When he took a small bite of his “red” food – he would earn a prize.

Prizes can be very motivating. It took me a long time to find what would motivate him to fight his fears. They change often and he often plateaus until I can find the next greatest thing.

That is okay because the payoff is worth it. He started to ask to do challenges. He wanted to earn more prizes. He kept me honest and kept me focused on the struggle. He celebrated his wins and so did I!

We started to incorporate natural challenges. When I saw him spit out his food (a compulsion that clearly indicated an intrusive thought was present) I would offer a challenge for him to take just one more bite and not let his OCD win. More often than not, with some coaxing, he would be up for the challenge.

#5 Patience

When you have a child with ARFID it takes tremendous patience. Progress is slow and set backs are par for the course.

My child no longer eats just goldfish. His list has grown much bigger, but it is hardly close to “normal.”

I have learned to take one day and one bite at a time. I can worry myself with panic, but that wouldn’t help either of us.

I try to think beyond the calories. Beyond the questions bouncing in my head like “how many bites did he take” and “has he had any protein at all today?”

I am trying to soak him up. Enjoy his insights. His questions about life and how it works. ARFID isn’t going away anytime soon, but we are slowly learning how to conquer it.

Thoughts/Comments?

Do you have a child with ARFID or know someone who does? Share this article and podcast with them. Do you have some helpful tips for parents who are raising a child with ARFID? Leave a comment below.

Books to Help Kids with ARFID: