Brielle has tummy issues. I recently posted that on the blog about her GI issues and hospital stay Brielle’s Hospital Stay. Another issue we have been dealing with since she was a baby is her aversion to food. It has always surpassed picky eating, but when we sought help we had never found answers until now. We now know she has a diagnosis called ARFID (Avoidant Resistant Food Intake Disorder).

When Brielle was 6 months old we tried to start baby foods with her. She was not interested and would gag and spit out anything we tried to feed her. We tried every baby food on the market from the time she was 6 months old until she was over a year old. I tried to make my own baby food. We tried to feed her ice cream, desserts, and virtually anything to get her to consume even a bite of food. She finally ate food by choice around 12 months. It was a few pieces of popcorn. I know, weird. From then on, we were able to introduce some other starchy foods like crackers, but in only very small doses. We took her to a speech pathologist at 12 months old to see if she had a sensory disorder related to certain textures. After a few appointments the therapist decided Brielle was just picky, because she would in fact try a variety of textures. The speech pathologist, along with our pediatrician, felt we should just keep trying to feed her a variety of foods. Because her food intake was so minimal she stayed on formula until age 2. I breastfeed her for the first 6 months, but even then I felt like she wasn’t eating enough even, so I would often pump and bottle feed her just to keep track of her intake to make sure she was getting enough. We nicknamed her twiggy, because she was very lean for a baby, all limbs.

At two years of age she still wasn’t eating enough and her food choices were minimal. She would eat literally just a handful of different food options. None of which included a fruit of vegetable. Yes, I tried bribing, I tried punishment, I tried just about every food avaible at the grocery store, farmers market, or restaurant. The problem is she won’t even try new foods. It is a compete resistance just based on the appearance or lack of familiarity with a food. You can come to my house and offer a piece of chocolate cake and I guarantee she won’t eat it. She will eat some frosting off the top, but that’s it.

I expressed my concern about her eating at EVERY appointment and checkup with our pediatricians and we have had several different because of moving. None could figure out the problem either. We eventually were referred to occupational therapy. We did it faithfully for 9 months and there was zero change. Oh I take that back, they worked on just carrots during those 9 months so she will eat 1-2 baby carrots about every 2 weeks. I am not exaggerating. This is our life. This is what we have been trying to work with for 5 years.

I finally learned about a new eating disorder about a month ago. I read the diagnosing criteria from the DSM (used by Psychologists and Psychiatrists) and she fit completely. Here is some information from on this disorder and a screen shot from their site about the DSM criterion for diagnosing: 

I hadn’t heard of this diagnosis because it didn’t exist when I  completed my PhD. It is a fairly new disorder. However, reading the the DSM and learning about the disorder provided me with some relief and hope toward getting her help. I am sad that she has this serious food aversion. I believe it is related to her GI issues and the pain and/or discomfort that had been caused by her slow GI system. However, now that we have that working with medications and help from great specialists, now is the time to address her eating issues.

As Brielle’s GI issues have escalated, so have her eating issues. However, even when those issues have been remedied her aversion to food has still remained. It appears to be a sort of phobia toward any food that caused pain or discomfort, even once. She also has a fear of even trying new foods. Not even a bite or nibble. I even promised her a trip to Disney World if she would TRY a bite of salad, ANY part of the salad. She refused. What kind of kid does that? Apparently, one that has a real problem with food intake.

Recently, we met with a psychiatrist, psychologist, and two medical doctors at a clinic that specializes in pediatric eating disorders. Brielle qualifies for their month long eating disorder program specific for ARFID. Because she is so young we will do “partial hospitalization”. This means we will check her in every morning into the hospital and check her out every evening for a full month. Did I mention it’s almost an hour from our home? I won’t complain though, because I am so grateful that we have answers, a name for what is going on with her, and specialists that treat this disorder. We are thankful, but also apprehensive. I want so badly for their program to work for her. She starts Kindergarden in the fall, and I want her to be able to eat at school. She often came home from preschool and hadn’t taken a single bite of the lunch I sent to school. I always sent her preferred food choices, but if I wasn’t there to prompt and encourage her to eat, I knew the chances of her eating weren’t great. I always made sure she consumed PediaSure after school, but with Kindergarden on the horizon I don’t want her to go 5 days a week without eating for 7-8 hours at a time.

Having a child who won’t eat is difficult. Having a picky eater is stressful because you are worried they aren’t getting enough nutrition. Having ARFID mean that you have a child who isn’t even consuming enough calories from food to sustain themselves. Three pediasures isn’t any way to live. The last couple of days Brielle has refused those as well, so it’s a good thing she begins this program soon! Otherwise she will be back in the hospital because of her weight loss and failure to consume enough calories to survive. I counted her calories yesterday and it was under 500. So if you see me out and about and I appear stressed it’s because I have a child who won’t eat and I want more than anything for her to eat for the sake of her own survival.