Medication Nonadherence Secondary to Choking Phobia (Phagophobia) in an Adolescent with Significant Trauma History: Addressing the Issue of Mental Contamination

Abstract

Chief Complaint and Presenting Problem

A. was a 15-year-old girl, the third of five daughters, who lived with her biological mother and stepfather in an underserved neighborhood of a major metropolitan city. Her primary diagnosis was posttraumatic stress disorder (PTSD) secondary to a history of sexual abuse and exposure to domestic violence. In addition, she had significant functional impairment attributable to deficient emotional self-regulation (DESR) and a secondary diagnosis of attention-deficit/hyperactivity disorder (ADHD), combined type. These symptoms were often most impairing in the context of a parent–child relational problem (PCRP).

A. had multiple previous inpatient psychiatric admissions, usually for self-injury or suicide attempts, and was admitted currently for suicidal ideation in the setting of a physical assault by her mother over an argument. A.'s presenting problems included longstanding medication nonadherence secondary to her fears of choking on medication, and medication refusal that occurred in the outpatient setting.

History of Present Illness

A.'s history of medication nonadherence began at 9 years of age, attributed by her to fears about choking on medication. A.'s initial exposure to medications occurred during her first admission to the inpatient unit at 9 years of age for suicidal ideation. Mother reported that A.'s behavior had become more aggressive and oppositional toward her after A. began remembering a distant sexual trauma that had taken place when she was 1 year old. After a week-long stay at this first admission, A. was discharged on methylphenidate 18 mg to be taken by mouth in the morning, to target ADHD symptoms, which were thought to be the basis of her impulsivity and emotional dysregulation. There was no documentation during the hospital stay concerning any difficulties swallowing medication or any episodes of nonadherence. A. reported that shortly after discharge, she had an episode of choking on the pill, during which mother hit her in the back with force to dislodge the pill. A. reported that she was still required to take her medication soon after this, which A. described as “upsetting” and “traumatic.” Since this episode, A. stated having a persistent fear of choking on medications and dying from the inability to breathe, even at the thought of taking medication.

A. was reported to do relatively well for four and a half years without medication until she was readmitted to the inpatient unit for superficial cutting behaviors with suicidal ideation and a reported suicide attempt by taking a bottle of quetiapine prescribed for her sister by an outpatient provider. During the admission, it was learned that the precipitant to the attempt was another sexual trauma. Since that time, A. has had frequent readmissions for suicidal ideation, aggressive ideation, and action toward her sisters and mother. These included an admission at age 14 after which she stopped all medications, and an admission 6 months before the current one after which she again soon discontinued all medications. A. attributed each instance of nonadherence to difficulty swallowing pills, reinforced by perceptions of permissive attitudes from both parents and outpatient psychiatrist, and reported negative feelings toward her outpatient psychiatrist. She denied any adverse effects from the medications as reasons for discontinuation of adherence. Her current admission was preceded by another sustained period of medication nonadherence.

Initially, A. reported her recurrence of suicidal ideation as beginning with her mother's physical assault. She reported that her mother slapped her, leaving a scar. A. reported frequent arguments with her mother, with fights often becoming physical. She reported thoughts of hurting herself, but denied intent or plan. She reported recurrent thoughts of hurting her mother, but denied intent on acting on these thoughts. A. endorsed depressed mood, but denied anxiety, manic, or psychotic symptoms, as well as substance use, confirmed by negative urine toxicology. She was admitted to pursue inpatient stabilization of her emotional dysregulation and to remove her from an emotionally and physically unsafe home environment. A social services case was opened to address her report of physical abuse.

Past Psychiatric History

A. had received multiple diagnoses in the past, including PTSD, ADHD, and oppositional defiant disorder (ODD). This was her sixth admission. She had undergone outpatient therapy from age 6 to 11 years. She never had consistent follow-up. After her initial admission at the age of 9, she had an emergency department encounter after running away from home when she was 11. She had no consistent therapy from age 11 to 14. After four consecutive admissions at 14 years of age, A. received weekly therapy and monthly psychiatric treatment consistently for 5 months before her current admission.

Developmental History

A. was the product of an unplanned, uncomplicated pregnancy without maternal use of alcohol, tobacco, or narcotics. Delivery was through a planned repeat C-section at full-term; postnatal history was uneventful. A. was reportedly exposed to alcohol, cocaine, and heroine, and sexual abuse, at the age of 12 months when she was left in the care of her maternal grandmother. Despite this, mother reported that A. met all developmental milestones on time, and was a “normal child” until 6 years of age. Then A. reportedly began to remember her sexual trauma and became “oppositional” with mother, getting into physical fights with peers at school, and sexually acting out.

Educational History

A. had recently finished eighth grade at the public school; she had an Individualized Education Plan to accommodate work missed in school due to multiple hospitalizations. She performed at an average level academically.

Social History

A. lived in a two-bedroom apartment in an inner-city neighborhood with her mother, stepfather, and two younger half-sisters ages 6 and 7 years. Her two older half-sisters lived about an hour's travel away. She was of Caribbean ethnic background, and reported that she identified culturally with her country of origin as well and the culture of the American city in which she was born and raised. Her stepfather worked to support the family since A. was about 5 years of age; mother was the primary caregiver. A. had not seen her biological father since she was a baby. A. was very close to her stepfather's mother who lived far away; this grandmother had plans to move in with the family in the near future. A. had witnessed domestic violence, including assaults against her mother before age six when she reportedly became more oppositional with her mother.

A. endorsed frequent arguments with her mother, usually regarding her required chores and lack of privileges. Notably, A. was not allowed to go outside the apartment, walk to school by herself, socialize with peers after school, or access the internet or mobile phones. Mother reported that this was enforced to “keep her safe.”

A. was a talented athlete, often receiving first place at local and regional swimming competitions.

A. aspired to serve in the military. She had plans to leave home as soon as she reached 18, to start with the Reserve Officers' Training Corp.

A. endorsed past weekly use of marijuana, but denied substance use in the 5 months before admission. She did not have any legal history. She had a history of bullying from peers in the past and could not name a best friend.

Family History

A.'s sister had a history of ODD and ADHD. A maternal aunt had a diagnosis of bipolar disorder. A.'s biological father reportedly had a paraphilic disorder. Maternal grandmother had a history of alcohol use disorder.

Medical History

A. had no major medical problems. There was a past history of mild asthma without medication or other interventions in the past 2 years. There was no history of head trauma. Menarche was unremarkable. Before her admission there had been no medical workup of her phagophobia.

Physical Exam and Admission Studies

Vital signs were within normal limits with temperature 98.1°F, heart rate of 98, blood pressure 112/58, respiratory rate 20, and oxygen saturation 99%. She was in no acute distress, awake and alert, well appearing on exam. Head exam was notable for healing abrasion on right cheek without tenderness or erythema. Heart, lung, and abdominal exam were within normal limits. Extremities were warm and well perfused. Admission laboratory workup showed normal levels in serum electrolytes, complete blood count, thyroid panel, urinalysis, and a negative urine pregnancy test. Her liver function tests were within normal limits with mild AST elevation and elevation in alkaline phosphatase, likely secondary to her age and growth spurt. Workup for her phagophobia included a speech and swallow evaluation by a speech therapist, without more invasive measures such as an endoscopy.

Medication History

At her first admission, A. was discharged on methylphenidate 18 mg daily. After three consecutive admissions at age 14, A. was discharged on sertraline 100 mg daily, guanfacine extended release 3 mg at hs, lithium extended release 450 mg twice daily, and aripiprazole 5 mg at half-strength (hs). After her most recent admission, A. was discharged on sertraline 100 mg daily, guanfacine extended release 4 mg at hs, lithium extended release 450 mg twice daily, aripiprazole 5 mg daily, and methylphenidate 18 mg daily. It is unlikely that A. benefitted from these medications, as they were always discontinued shortly after discharge due to her inability to swallow them and parents' unwillingness to engage with A. regarding this matter.

Mental Status Examination

A. was an adolescent girl who appeared to look her stated age dressed in a hoodie, clean shirt, and cropped pants, fitting neatly to her tall, lean physique. She wore glasses, which she often let slide down her nose to make a playful face, but she maintained good eye contact throughout and remained polite, calm, and cooperative. She often made childish and exaggerated facial expressions and hand gestures, as if to engage the interviewer in a game. There were no abnormal movements or behaviorisms. Speech was spontaneous, fluent, and well developed at an appropriate volume and rate.

Initially she described her mood as “good” and her affect appeared euthymic, congruent, full range, and reactive. As A. was describing the event leading up to the admission, she became irritated and tearful, describing her mood as “mad,” and shaking one of her legs tremulously.

There was no evidence of thought disorder, and she denied suicidal or homicidal ideation. She denied auditory or visual hallucinations and did not appear to be responding to internal stimuli. Her insight and judgment were fair.

Treatment Course

At the time of this admission, A. had not been taking medication for 5 months. A. initially reported significant anxiety related to taking pills, with feelings of her throat closing, and perseverated on wanting liquid suspensions rather pills. As on prior admissions, A. was told that she could not be forced to take medication, but that the treatment team encouraged her to do so in the solid tablet form. A. was evaluated by a speech and swallow therapist on the unit, who determined that she had no mechanical dysfunction that was contributing to her difficulty swallowing medication; this served to reduce some of her anxiety.

A. was started on guanfacine PO 0.5 mg twice daily and sertraline PO 25 mg daily on day 1 after reassurance that no general medical conditions, including oropharyngeal anatomy or nonfunctional dysphagia, were contributing to her fears.

From the first day, A. accepted all medications on the unit without agitation or anxiety surrounding administration, although repeatedly requesting liquid suspensions. A was gently redirected at all engagements in this conversation. Sertraline was gradually titrated to 100 mg daily, with subsequent improvement in her mood. Guanfacine was started to target emotional regulation and impulsivity and it was initially rapidly titrated to 2 mg twice daily, which resulted in a hypotensive episode with symptoms of dizziness in the setting of inadequate intake. The dose was reduced to 1 mg twice daily together with encouragement of fluid and nutritional intake, with resolution of hypotension. A. did not complain of any other adverse effects of guanfacine or sertraline, and toward the end of the hospital stay, she acknowledged that the medications helped with her emotional regulation and sleep.

The team simultaneously discussed the importance of medication adherence and explored potential reasons why this might be frightening for her, including the first episode of choking, different sizes of medications she received as an outpatient compared with on the unit, and her views of her caretakers and clinicians. She often reported sadness that she perceived her mother as not affectionate; during family meetings, the team emphasized some of the positive aspects of the mother–daughter relationship. The family was agreeable to continue family therapy after discharge.

A. was able to engage fully in the treatment plan focused on skills training for emotional self-regulation, environmental enrichment, and understanding response cost to disruptive behaviors in a stressful family situation. Unlike prior admissions, during which A. was described as more negativistic and provocative, A. remained in good behavioral control and better able to verbalize her feelings spontaneously and openly.

To ensure better medication in follow-up, A. was discharged to home with a detailed therapeutic written contract aimed at medication adherence and behavioral control to increase her privileges and concordant responsibilities.

Brief Formulation

In summary, A. was a 15-year-old girl with emotional dysregulation in the setting of PTSD and PCRPs admitted to an inpatient psychiatric unit for recurrence of suicidal ideation following physical assault by mother in the context of a prior pattern of repeated medication nonadherence. Past psychiatric history included multiple prior admissions for suicidal ideation and behavioral disturbance, worsened acutely after a sexual trauma, notable for almost immediate discontinuation of all medications in the outpatient setting secondary to difficulty swallowing medications. A normal speech and swallow evaluation revealed no evidence of anatomic or physiological impediments to swallowing. In the context of a supportive and safe milieu, treatment with pill forms of sertraline and guanfacine resulted in gradual improvement in her mood symptoms.

From a biological perspective, it was possible that even with a normal speech and swallow evaluation, A. had a narrow throat or hypersensitive gag reflex. Interestingly, she endorsed no fear of swallowing foods, but had a perceived need to chew all food into very small pieces suggestive of psychological factors. Given a family history of major affective disorder, A. would be rendered vulnerable to the development of mood and anxiety symptoms independent of her phobia.

From a psychosocial perspective, it is possible that A. re-experienced fearful memories of the “trauma” of the first choking and mother's forceful attempts to dislodge the pill. Recent maternal assaults superimposed on this early experience could have contributed to an aversive topographical reminder leading to a physiological or “gut” reaction, and evolutionary avoidant response, to taking medication. It is notable that A. was routinely able to ingest medications during hospitalization in an environment perceived as safe and autonomous in contrast to her outpatient experience. A.'s early and extensive trauma history could have rendered her especially vulnerable to a heightened emotional response to an unwanted foreign body imposed upon her. Refusal to ingest medication could serve as A.'s avenue as a powerless child to reclaim some sense of control in a restrictive and at times dysregulated home environment and relational system, in contrast to her experience in an emotionally safe and supportive hospital milieu.

Multiaxial Diagnoses

Axis I: PTSD

ADHD

PCRP

Axis II: None

Axis III: Mild asthma

Axis IV: Psychosocial stressors included restrictive and unstable home environment, sexual trauma

Axis V: Current Global Assessment of Functioning Score: 55 at time of discharge

Discussion

A.'s apparent fear of swallowing pill medications, although situational, was a form of choking phobia, also known as phagophobia (McNally 1994). This is an interesting but complex symptom in a child or adolescent with several potential etiologies. In this case, A.'s perceived fear of choking on pills led to avoidance of ingesting medication and resulted in persistent nonadherence; early trauma around oral issues appeared to serve as an underlying risk factor, perpetuated by repeated and recurrent trauma.

Functional dysphagia is described as difficulty or impairment in swallowing rather than a fear of choking (Okada et al. 2007). Results from A.'s speech and swallow evaluation appeared benign enough to preclude a follow-up evaluation with more invasive measures such as endoscopic evaluations (Thottam et al. 2015). Functional dysphagia should be differentiated from an eating disorder such as anorexia nervosa, in which difficulties in feeding arise from an intense fear of gaining weight and distorted body image rather than a fear of swallowing (Okada et al. 2007). It can be distinguished from somatoform disorders such as globus pharyngis, also known as globus hystericus, because in the latter, patients often have feelings of having a “lump in one's throat” without actual temporal relation to the act or thought of swallowing.

Phagophobia has unique determinants that differentiate it from these disorders. In a study of the psychopathology of choking phobia (Okada et al. 2007), the authors categorized the disorder as either “posttraumatic” type or “gain-from-illness” type. In the posttraumatic type, the phobia stems from the psychological trauma of choking, and in the latter, conversion symptoms persist due to a gain from illness. A.'s case is suggestive of the “posttraumatic” type; however, we could not rule out secondary gain factors, in that by refusing medication, A.'s emotional and behavioral dysregulation led to further problems and she was able to return to a safer hospital environment. It has been proposed that in either type, the fear of choking occurs after choking on the offending agent that the patient grows to fear, consistent with A.'s experience of choking as a direct trauma.

One additional avenue of understanding the phenomenology and characteristics of phagophobia is through the construct of mental contamination associated with a subset of patients with obsessive–compulsive disorder (OCD) (Rachman 2004, 2006). Mental contamination is thought to occur following emotional or physical violations, as well as recurrent unwanted thoughts, memories, or mental images, and can lead to a significant fear of contamination and feelings of disgust evoked by a perceived offending contaminant. These obsessions can generate the need for subsequent compulsory actions, including washing, cleaning, and/or avoiding behaviors to prevent recontamination.

In support of this conceptualization in A.'s case, studies have shown that mental contamination may be present in a subset of PTSD sufferers, especially in cases of sexual assault (Fairbrother and Rachman 2004). In addition, feelings of dirtiness can arise in the absence of any physical contact with a contaminant (de Silva and Marks 1999; Rachman 2004; Fairbrother et al. 2005). Although A. did not exhibit classic OCD symptomatology, her severe pill swallowing avoidance suggests that she may have unconsciously linked the act of swallowing a foreign body with perception of her mother's physical aggression at the time of her choking accident, and repeated sexual assaults by family members. It is possible that thoughts of taking medication allowed A. to imagine being in a safe hospital environment away from her disruptive home, which would have been irreconcilable with her wish to believe that her home was a place of affection and care. This thought–action fusion, defined as the belief that having unacceptable or disturbing thoughts is the equivalent of carrying out the action, could have been a factor contributing to maintenance of mental contamination by evoking the feelings of harm, guilt, and negative affect (Rassin et al. 2001; Abramowitz et al. 2003; Rachman 2010). Mental contamination from traumatic conditioning leading to behavioral avoidance is likely mediated by a complex yet incompletely understood rewiring of the neural network.

There are neural correlates to these models. Research has shown that the prefrontal cortex (PFC) generates mental representations that guide top–down control of affect regulation, attention, goal-directed behavior, and impulse control, to coordinate rational and flexible behavioral response (Goldman-Rakic 1996). The amygdala influences behavior by guiding habitual responses through projections to the striatum and consolidating fearful or emotional memories through projections to the hippocampus (Van Bockstaele et al. 1998). During unstressed conditions, moderation of the noradrenergic (NE) firing signal through high-affinity alpha-2A receptors strengthen dendritic connectivity in the PFC and weaken that in the amygdala. During stress, it has been shown that high levels of catecholamine are released, impairing working memory functions of PFC while strengthening memory consolidation of the stressful events in the amygdala (Arnsten 2015). High levels of NE during chronic exposure to stress lead to activation of low-affinity alpha-1 adrenoreceptors that reduce firing of PFC neurons and strengthen those in the amygdala, which over time, lead to changes in dendritic spine densities and remodeling of the circuitry (Shansky et al. 2009). As in A.'s case, children with ADHD may experience significant emotional lability and are known to have deficiencies in amygdalar connectivity (Hulvershorn et al. 2014). Therefore, to achieve more stable behavioral and emotional functioning, in theory alpha-2A agonists or alpha-1 antagonists could be utilized to strengthen PFC connectivity.

Patients with PTSD have impaired PFC connectivity, and studies have found that alpha-1 blockers such as prazosin (Raskind et al. 2007, 2013), are effective in modulating PTSD symptoms. Interestingly, although some literature suggests that alpha-2A agonists, such as guanfacine, have shown to be ineffective in adults with PTSD (Neylan et al. 2006; Davis et al. 2008), there are also studies supporting its use in childhood populations (Connor et al. 2013). Traumatic stress in children and adolescents can present with symptoms of hyperarousal, including aggression and irritability, difficulty concentrating, and disturbances in sleep cycle, many secondary to PFC dysregulation. They can often be clinically similar in presentation to those with primary impulse-control disorders such as ADHD (Ford et al. 2000; Szymanski et al. 2011). A relatively recent study of extended release guanfacine in children and adolescents with traumatic stress demonstrated effectiveness for hyperarousal symptoms (Connor et al. 2013). This was an 8-week, open-label design using an average daily dose of 1.19 mg, with improvement in 71% of participants measured on avoidant and overarousal rating scales. This suggests that guanfacine may be useful in pediatric PTSD.

In our case, A. was prescribed both sertraline and guanfacine to improve DESR instead of sertraline monotherapy, given that her presentation was more consistent with PTSD with co-occurring ADHD. Because she had manifestations of hyperarousal, including exaggerated startle reflex and hypervigilance, avoidance such as waking up early in the morning, as well as past impulsivity and recurrent negative affect, guanfacine appeared to be of the highest and appropriate therapeutic value relative to mood stabilizers or antipsychotics. In addition, we reduced medications to two to facilitate long-term medication adherence in the context of outpatient psychodynamic therapy.

Currently, there is no consensus on optimal treatment and management of choking phobia. Prior studies have reported a variety of behavioral approaches, including cognitive behavior therapy (Baijens et al. 2013; Lopes et al. 2014), hypnobehavioral therapy (Culbert et al. 1996; Reid 2016), and eye movement desensitization and reprocessing (De Jongh et al. 1999). Pharmacotherapy with selective serotonin reuptake inhibitors has also been investigated (Banerjee et al. 2005). In addition, there are several pill properties that may make them difficult to swallow; adult studies reported many factors, including pill size, capsular versus tablet formulation, and pill shape, as well as head posturing and amount of water ingested with medication (Schiele et al. 2013; Fields et al. 2015). Specific physical pill characteristics can be included in formulation of optimal medications in phagophobia which is not responsive to psychosocial interventions. In a recent review of the effectiveness of pill swallowing interventions in pediatric patients, successful interventions included behavioral therapy, flavored throat sprays, and head posture training (Patel et al. 2015). Our patient A. was provided education on head posturing (Schiele et al. 2014) and different amounts of water intake with swallowing during therapy sessions, and she was able to remain adherent throughout her stay.

Supporting adherence to medication must come first if the patient is to gain any benefit, given that nonadherence is not uncommon in adolescents. More investigation is needed, as phagophobia, as illustrated by our patient, is a manifestation of complex biopsychosocial forces and interactions.

Footnotes

Acknowledgment

The authors would like to acknowledge and thank Melissa Fluehr for her assistance in review of the article.

Disclosures

B.J.C. has received research support from Auspex/Teva, Catalyst, Neurocrine, NIMH/Rutgers/USCF, and Shire, and is part of the advisory board for Auspex/Teva, Genco Sciences, co-Chair of the Medical Advisory Board of the Tourette Association of America, and honoraria for the American Academy of Child and Adolescent Psychiatry. A.C., J.K., M.A., M.B., M.J.L., T.R., and Y.K. have no conflicts of interest or financial ties to disclose.

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