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Visiting Aunt Betty: From Primary to Specialty Care

Posted By Kenneth Phelps, Tuesday, May 13, 2014
Over the last four years, the Smith’s quiet existence has been disrupted by a series of obsessions, compulsions, motor tics, and vocal tics. It all started when their seven year old son, Michael, began to blink and roll his eyes rapidly. At first, like most parents, Keith and Tanya Smith assumed this may be related to allergies. As the symptoms persisted and generalized to turning his head from side to side, throat clearing, and shoulder shrugging, the parents knew something more was wrong. Their pediatrician referred them to a neurologist who diagnosed Michael with Tourette Syndrome due to the presence of both simple and motor tics. Shortly thereafter, the Smiths noticed their then thirteen year old daughter, Allie, began taking extended time to get ready in the mornings. When checking on her, they would see her tapping in increments of four, flicking light switches, and insisting on passing items back and forth in a specific visual path. A thorough interview with a mental health professional revealed the presence of obsessive compulsive disorder (OCD). Having discussed these respective diagnoses with specialists and various treatment plans, the Smiths were left wondering how they could support their children, as well as how they could take advantage of the best the medical system has to offer as a means to effective symptom management.  

Four years later, Allie recently obtained an acceptance letter from a major university. She hopes to study psychology, feeling inspired by the work she and her family did with a therapist and psychiatrist. She participated in Exposure and Response Prevention (ERP), a cognitive behavioral therapy for OCD. Michael is now in the throes of puberty, which can be quite challenging for a person living with Tourette Syndrome due to the common increase in tics. While this could be the case, Michael has an artillery of techniques learned through the evidence-based approach of Comprehensive Behavioral Intervention for Tics (CBIT). He now knows how to detect the premonitory urge preceding his tics and engage in his competing responses (or “exercises”) to quail the tics’ impact on his quality of life. While his tics continue their waxing and waning cycle, he is much less bothered by their presence, instead shifting his focus to running track and field.

Two elements core to CFHA were the tipping point to their success So what led the Smith kids to succeed in treatment? Their engagement in care and motivation undoubtedly led to much of their progress. Additionally, two elements core to the Collaborative Family Healthcare Association was the tipping point to their success: 1) involvement of the family and 2) close collaboration. Keith and Tanya Smith were involved in all elements of treatment. For Allie, they learned about how to disentangle themselves from OCD’s grip on their family life. Where they would have originally accommodated OCD’s demands to repeat something in just the right manner or hand an item from left to right at the dinner table, the parents learned to help Allie “talk back to OCD” and realize that her anxiety would eventually subside through exposure to such situations. They reinforced Allie’s gains through labeled praise and special dinners out. These gestures of positive reinforcement were not isolated to Allie. The Smiths also identified factors that worsened their son’s tics, including technology time, speaking about the tics, and when frustrated by chores or academic work. They worked closely with professionals to remind Michael of his exercises and reinforce his engagement in the behavioral plan. The family’s participation in treatments was crucial to ensure each youth had a supportive context to complete the therapeutic work. Family meetings with all parties helped to strike a balance of togetherness and separateness while they combated the influence of OCD and tics in their lives.  

Equally important as family involvement was communication and coordination among professionals. While integrated care is an increasingly common occurrence within the patient centered medical home, what happens to communication when a child or family visits a distant home down the street? Certainly, a therapist located in the pediatric office could have done some of this diagnostic and therapeutic work. However, many pediatricians would want a neurologist or psychiatrist specialized in the complexities of OCD or Tourette Syndrome to be involved until stabilization occurs. This is just what happened for the Smiths. While they were referred to a neuropsychiatric clinic several blocks down from their pediatric office, the specialist team updated the primary care team every 3 sessions about treatment goals and progress to date. This was vital to ensure conflicting recommendations did not occur, medications could be updated in both records (as they didn’t share records at this point), and that Allie and Michael’s care could remain centralized at the pediatric office. Through this collaboration, their pediatrician learned to remind Allie to “wait out the urge to do the compulsion and talk back to OCD.” Once stabilized, she continued to refill Allie’s medication and monitor for relapse. The pediatrician also became more nuanced in asking about premonitory urges and competing responses associated with tics, leading to better identification of other children in the practice who may benefit from behavioral and familial interventions for moderate to severe tic disorders.

 If the pediatric office is the medical home, the specialist office is akin to visiting a relative’s home for the summer. We certainly wouldn’t send our children to Aunt Betty’s home from May to August and never speak to Aunt Betty during this time. Because we care about our children, we need to know Aunt Betty’s perspective on how they are doing, any challenges she is facing, and when the kids will come back home. Similarly, it is vital for communication to flow reciprocally from medical home to specialist home so all are aware of diagnoses, treatment plans, and prognosis. Collaborative care extends far beyond a conjoint interview of a patient that involves both a medical and mental health professional. It is being mindful of the large silos that exist in our system, which require persistence and consistency in communication between involved providers. This generates mutual learning and improved outcomes for the patients and families we serve.  

Kenneth W. Phelps, Ph.D. is an Assistant Clinical Professor in the Department of Neuropsychiatry and Behavioral Science at the University of South Carolina’s School of Medicine. He is a Licensed Family Therapist with a doctorate in Medical Family Therapy. He specializes in the treatment of individuals, couples, and families coping with a variety of chronic medical conditions. Dr. Phelps completed training in CBIT from the Behavioral Institute of the Tourette Syndrome Association. He provides therapeutic services alongside pediatricians, neurologists, and psychiatrists in an academic medical practice.  

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