Unlocking Behaviors: Unintentional Weight Loss

By Ley Linder, MA, M. Ed, BCBA and Craig Escudé, MD, FAAFP, FAADM

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how behavioral issues can be addressed in an interdisciplinary fashion. Dr. Escudé and Ley are recipients of the 2024 AADMD Excellence in IDD Journalism Award for this ongoing series. 

John is a 38-year-old man with moderate intellectual disabilities, and although an effective communicator, his expressive speech is limited to small phrases or short sentences. He has medical diagnoses of vitamin deficiency, allergies, and constipation for which he takes docusate sodium, a multivitamin, and Vitamin D.  Jonathan also takes clonidine, lamotrigine, lorazepam, risperidone, trazodone, sertraline, and bupropion. Jonathan has a history of physical aggression, homicidal and suicidal ideations, property destruction, incontinence, and sustained periods of crying. 

Over the last six months, John has shown a marked change in his global health and functioning status. In the past, John had sporadic urinary incontinence, but it has become daily and now includes bowel incontinence. He used to enjoy attending a day services program, but has quit going, in addition to refusing car rides, going on community outings, and sitting on the couch with his housemates and staff. He now chooses to spend most of his time in his room with the lights off, lying in his bed, “disengaged” but not asleep. When you ask how he feels, he will “scrunch” his face to indicate he doesn’t feel well. He has been noted to have begun scratching his torso, head, and arms and “stealing food from the kitchen.”  John had increases to his sertraline twice in the last five months with no change in psychobehavioral presentations. 

“It is important to note that behaviorally complex issues often require an interdisciplinary approach because multiple issues need to be addressed. Many people with intellectual disabilities have interconnected comorbidities that can lead to impacts in multiple domains, leading to a global decline in function. ”

Medical Discussion

Several medical conditions should be considered when someone shows the symptoms described above. I’ll group them into classes. Medication side effects or interactions should be at the top of the list whenever someone is on multiple medications with significant potential for interactions or ones that have sedative properties. Can some medication be reduced? Neurological decline from seizure activity or cognitive changes, such as dementia, should be considered. The itching he is experiencing could be from drug allergies, liver dysfunction, or some chronic dermatologic condition. B12 deficiency can be associated with itching as well. Unexplained weight loss, especially when a person is eating well, can be related to cancer, and this should be ruled out. Significant emotional and mental health conditions can be associated with apathy, loss of interest in usual activities, and disengagement. Autoimmune and endocrine conditions should also be considered.

Behavioral discussion

The behavioral presentations John is exhibiting are perplexing in many ways, but one is that they appear to be disconnected. What would new-onset bowel incontinence have to do with refusing to attend work? Many behavior analysts are trained to identify the factors that happen before the onset of behavior. However, this becomes difficult when there is no apparent cause for the behavior change or the change occurs slowly over time.

John’s situation elicits far more questions upon the initial review. Behavior analysis can change forms while adhering to the fundamental approaches. One way to leverage behavior analysis is to use it to gather information systemically, which can then be provided to a physician, nurse, healthcare coordinator, and other team members. In John’s case, this was the primary function of the behavior analyst.

The additional information gathered indicated that he had a 22-pound unintended weight loss in the last seven months, with no loss of appetite, and, in fact, the “stealing food” behaviors were his going to the kitchen to get extra food.   Staff members at John’s house noted he slept throughout the night, even though he was less active during the day. They said John was not vomiting, coughing, burping, or spitting when eating. Additionally, staff noted times when John drinks excessive amounts of water from the sink or large cups, and cries for extended periods. Staff provided specifics on the timeline of when the behaviors started and historical information regarding periods of stability.

Any instance of unintended weight loss warrants the inclusion of medical professionals to provide additional insight. 

Outcome

Many cases in the “Unlocking Behaviors” series are active, and the outcomes are a work in progress. This is such an instance, and at this time, ongoing diagnostic and medical specialty appointments are waiting to be completed. At the time of publication, these are the actions that have been completed by the interdisciplinary team: a urinalysis was completed and negative for a urinary tract infection, multiple primary care visits (including a second opinion) with monthly health screening and weekly weight checks, docusate sodium was discontinued, blood work was completed but was “unremarkable”, referral to gastroenterology, ongoing consults with the psychiatrist to address psychotropic medications, referral to SLP for a swallowing evaluation, as well as ongoing behavior support to capture specific behavior presentations.  Discussions have been had to discuss the possibility of H. pylori, celiac disease, and other possible gastrointestinal concerns.

It is important to note that behaviorally complex issues often require an interdisciplinary approach because multiple issues need to be addressed. Many people with intellectual disabilities have interconnected comorbidities that can lead to impacts in multiple domains, leading to a global decline in function. 

About the Authors:

Ley Linder is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He works closely with national organizations such as the National Down Syndrome Society and the National Task Group on Intellectual Disabilities and Dementia Practices, and is the Founder/CEO of Crescent Behavioral Health Services based in Columbia, SC.

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an e-learning course used to train clinicians on the fundamentals of healthcare for people with IDD.