September 9, 2019
Hi and welcome to our blog. I thought I would make my first blog about some of the signs, or “red flags” that you or your child may need medical/therapeutic attention for ARFID, based on our own experience. An important sign for us, that our son was becoming critically ill, was when he was classified as “failing to thrive,” by both his gastroenterologist and pediatrician. In an attempt to understand why he was faltering in his growth, his endocrinologist ordered a growth hormone test if he was deficient in growth hormone. When the results came in low but “normal,” the doctors blamed his lack of growth on malnutrition.
Malnutrition can be revealed in a variety of ways, such as through a low weight gain, weight loss, or insufficient growth. A doctor that checks a child’s growth chart can see that the curve is not progressing along the same path as it had previously been moving on. Malnutrition can also be detected through bloodwork, often through signs of anemia or hormones levels, or deficiencies of nutrients within the body. A child’s heart rate can be affected too. These are things that a pediatrician can test for should they suspect that your child is not thriving and/or suffering from malnutrition.
More overtly, a clear sign that your child may be more than just a "picky eater" is a blatant refusal to eat food or certain categories and textures of food. You might notice that there there are many foods that you or your child used to enjoy but no longer will eat. You might observe that your child appears to be in “pain” when eating. He/she may be increasingly using supplement as a crutch to replace eating solid food. Maybe his/her doctor has gone so far as recommending you or your child have a feeding tube installed.
Often, as ARFID progresses, the above signs are revealed through non-medical ways, such as your child becoming more forgetful (as a result of a starved brain). For my son, this would happen often. He also would “lose time” when he was talking to us. In the middle of a conversation, he would suddenly stop and stare blankly at the wall, then once we gently nudged him a bit, he would “wake up” and ask us what just happened. This is probably in more severe cases of malnutrition, but it is something to take seriously and seek urgent medical care.
There are also more subtle signs that one can look out for, such as heightened isolation or an increase in depression/anxiety. The problem with the more subtle signs of ARFID is that it is easy to blame some of the above on your child being a “typical hormonal tween or adolescent” and therefore may get written off as a “normal” behavior.
My son exhibited all of the above and more. Additionally, we had tried less intensive therapeutic techniques such as occupational therapy and regular therapy in conjunction with a psychiatrist. In hindsight, it is difficult for me to believe that I did not see so many of these symptoms. As a parent, I think we instinctively want push problems away because if we don’t admit them, they do not feel as real. We want to see our kids as being healthy and happy and when we don’t, we feel helpless and blame ourselves.
My son was nothing but skin and bones when we urgently admitted him to the hospital. He was literally dwindling away right before our eyes and yet we couldn’t see it. Yes, we saw that he was skinny, but when you see somebody day in and day out, you don’t notice the changes that are happening right in front of you. It’s like when your kid is a year older, they still look exactly the same to you as the year before. It is not until you look at a picture from a year ago, that you are like, wow, look how much he has changed! When we were bringing my son to the hospital, we suddenly were able to step away from the situation and truly examine his emaciated body. It was then that we were horrified that we hadn’t noticed it sooner.
All the above signs are easy for me to point out now and I hope that I would more easily identify them, should my son or any of my children exhibit these signs in the future. But as I said, it is easy to have blinders on. Hopefully, this article can help you to be more attuned to some of the red flags of ARFID.
9/8/2019 08:58:52 pm
Hi there. i am so happy you are sharing your story. This will help so may families out there.
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