We received the following question:
I have a son with Down syndrome. He had testicular cancer in his late 20s. Since then, he seems to have developed an eating disorder. He always feels he is too heavy (which he is not). I am working with a psychologist and a nutritionist. Do you have any other suggestions?
We have seen several individuals with Down syndrome who have what we have called for years "eating refusal." We saw it frequently enough that we gave it its own chapter in the first edition of our Mental Wellness book. We have expanded that chapter for the second edition.
Since we wrote the first edition of Mental Wellness, the diagnosis of Avoidant/Restrictive Food Intake Disorder (ARFID) has been added to the DSM-5 . As described on the website of the National Eating Disorders Association :
"Avoidant Restrictive Food Intake Disorder (ARFID) is a new diagnosis in the DSM-5 and was previously referred to as "Selective Eating Disorder." ARFID is similar to anorexia in that both disorders involve limitations in the amount and/or types of food consumed, but unlike anorexia, ARFID does not involve any distress about body shape or size, or fears of fatness."
Commonly in our patients, a physical illness triggers the onset of symptoms. This has included peptic ulcers (an ulcer in the stomach or duodenum), a choking episode, conditions causing throat pain, and others. It often seems logical that the physical problem directly serves as a trigger. For example, when a person with an ulcer ate, the person experienced pain and, therefore, stopped eating. However, frequently, the direct cause and effect may be less clear (as perhaps may be the case with someone who developed these symptoms after treatment for testicular cancer). These less direct causes and effects may include the psychological response to being ill, being in the hospital, having anesthesia, or having a change to the body (e.g., removal of the testicle). Hopefully, a psychologist can assess and help redirect an individual's thinking in these situations.
In our experience, the individuals have not typically had body image misperceptions as part of their symptoms. Therefore, while not always specifically meeting the criteria for ARFID, their symptoms were closer to meeting the criteria for this diagnosis than for the diagnosis of anorexia nervosa. While expression of body image concerns is not common in our experience, we did see at least one individual who became very concerned about his cholesterol level after being told that it was high. He developed restricted eating in response. He did not have a misperception about his body, but he did have a misperception about his cholesterol value and struggled to eat more normally, even after his cholesterol value returned to normal.
For our patients, as you have indicated, we recommend they see a counselor (psychologist or similar) and a nutritionist. In addition, obsessive compulsive disorder (OCD) is more frequent in people with Down syndrome and there is often a component of OCD in our patients with eating refusal. As part of the whole treatment plan (including counseling, nutrition, family support, etc.), several individuals have benefited from treatment with medications for OCD.
More resources from our online library can be found here.