Short-Term Treatment

, Julia Doss², Sigita Plioplys³ and Jana E. Jones⁴

(1)

Department of Psychiatry, UCLA, Los Angeles, CA, USA

(2)

Department of Psychology, Minnesota Epilepsy Group, St. Paul, MN, USA

(3)

Department of Psychiatry, Northwestern University, Chicago, IL, USA

(4)

Department of Neurology, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA

Keywords

PsychoeducationBehavioral approachNon-epileptic seizure controlAnti-seizure drugsTherapySchool reintegrationTreatment settings

Overview of the Treatment of PNES

The ultimate treatment goal is to help the child stop dealing with stressors and conflictual situations by avoidance and learn to cope and problem-solve in an adaptive manner. For didactic purposes, the treatment guide separately addresses the goals and techniques used in the short- and long-term treatment phases. However, some of their treatment goals and therapeutic strategies may overlap.

Comprehensive therapeutic intervention for pediatric PNES includes several modalities, such as psychoeducation, therapy (e.g., insight-oriented individual therapy, cognitive behavioral therapy (CBT), group therapy, and family therapy), and psychopharmacological treatment. In some cases, special education services, educational therapy, and social skills training are also indicated. Of note, work with the parents is an integral part of the treatment even when there appears to be no obvious family dysfunction. It provides the parents with the skills and support they need to cope with and manage the child’s episodes, conversion disorder, and comorbid psychopathology.

The choice of the type of therapy depends on the needs of the individual case and on the availability of a professional with the relevant expertise. We recommend an eclectic approach that uses different therapeutic modalities based on the severity of the conversion disorder, the presence of comorbid psychopathology, and the level of family function or dysfunction. To be successful, the treatment approach should be flexible, and its modalities can change over time to address emerging problems as the patient and family reveal new issues during the course of treatment. Most importantly, multimodal treatment of pediatric PNES involves a multidisciplinary team that minimally includes a mental health professional (psychiatrist, psychologist, social worker, therapist, or counselor), a pediatric neurologist or epileptologist, a primary care physician, and school staff.

The short-term treatment phase starts after the team confirms a PNES diagnosis and provides sensitive diagnostic feedback to the parents and child as described in Chaps. 2 and 3. Ideally, it begins while the patient is still in the hospital undergoing the diagnostic assessment. But it might only occur after the child’s discharge from hospital in the outpatient setting. You, the mental health clinician, then assume the role of the primary treating clinician and case coordinator. You will guide each of the multidisciplinary team members (pediatric neurologist/epileptologist, primary care providers, and school staff) on their role in achieving the treatment goals and meeting the needs of the child and parents. Table 4.1 above presents the goals of this treatment phase.

Table 4.1

Short-term treatment goals

Provide psychoeducation about PNES

Develop rapport with the child and parents

Start individual therapy with the child and work with the parents to achieve symptom control and resolution

Reestablish the child’s regular life routines including return to school

Treat comorbid psychopathology

Short-Term Treatment Goal 1: Psychoeducation About PNES

Effective psychoeducation about PNES is the first step in the initial treatment phase. It begins during the feedback and arms the parents and children with the information necessary to understand that PNES is a psychiatric not a neurological illness. In addition to relieving their fear and anxiety about the effects of unpredictable PNES episodes, effective psychoeducation facilitates successful transition from medical care to psychiatric care. By providing information about PNES in a developmentally sensitive and empathic way, you will develop the rapport needed for the child and parents to collaborate with the treatment plan.

Provide separate psychoeducation to the child and parents to ensure that information the child shared with the treatment team will remain confidential until the child is ready to reveal it to the parents. In addition, it provides a safe milieu for the child in case the parents express negative feelings involving the child, such as difficulty accepting the child’s psychological problems, anger because they think the child may be faking seizures and other physical symptoms, as well as guilt for not realizing that the child was experiencing the emotional difficulties that triggered the illness.

You should also regularly update the child’s neurologist/epileptologist about the treatment progress. This helps the child’s neurologist/epileptologist feel supported in their care of the PNES patient. Furthermore, it ensures that the neurologist/epileptologist will discontinue unnecessary antiepileptic drugs (AEDs) [1].

Delivery of psychoeducation to the child’s school staff is a prerequisite to decreasing their anxiety about the student’s episodes at school and ensuring their cooperation with your recommended plan for the child’s return to school. The sections below outline how to deliver psychoeducation to the parents, the child, the child’s clinicians, and the school staff.

Psychoeducation for the Parents

Remind the parents that PNES is a rare disorder and usually due to a conversion disorder in which emotional problems are converted to or channeled into physical symptoms. Find out what the parents understood about the treatment goals and approaches described during the diagnostic feedback. If the parents’ concerns indicate that they have difficulty accepting that their child’s seizures are not due to epilepsy, ask them to share their doubts with you. Acknowledge their fears about misdiagnosis of their child using the following explanations and approaches:

PNES episodes look very scary for people who do not have any medical background or experience dealing with seizures due to epilepsy.
Seizures due to epilepsy can have complex presentations. Whereas the standard approach to rule out epilepsy is based on the clinical presentation of the event, this is not the case for PNES. Only a prolonged vEEG can capture the events in question.
For parents who are convinced that their child’s episodes look like “real seizures,” review the vEEG recording together with the pediatric neurologist/epileptologist and the parents to show them the negative findings (no epileptic activity on the EEG tracing when the child has seizure-like symptoms).
If a vEEG recording is not available, tell the parents that although the child’s episodes may look very much like “real seizures” due to epilepsy, some of the child’s symptoms are not typically seen during seizures due to epilepsy. Then explain which features are uncharacteristic of the seizures of epilepsy but commonly seen in PNES. These include extended duration of the event without subsequent cognitive and behavioral changes, tightly closed eyes, erratic movements of the extremities and the entire body, as well as dramatic vocalizations and/or crying during the event. In addition, the presentation of symptoms often changes over time.
If parents still have difficulty accepting the PNES diagnosis, recommend an additional follow-up visit with the treating pediatric neurologist/epileptologist or primary care provider.
To ensure that the parents have a good understanding of PNES and why their child was diagnosed with a conversion disorder, direct them to the few online resources about pediatric PNES (see Appendix A) to increase their knowledge about the disorder.

Repeat the description of the short- and long-term course of the illness that parents have already heard during the diagnostic feedback. It is important for the parents to understand that the frequency of PNES episodes will decrease with time. But they should also be aware that these events might recur or present as other types of somatic symptoms (i.e., headaches, abdominal pain, dizziness, pain, muscle weakness, or other abnormal movements) even during the more advanced stages of treatment when the child develops more effective communication, coping, and problem-solving skills.

Help them understand the need to gradually stop the AEDs if the child does not also have epilepsy and/or need these drugs as mood stabilizers. Encourage the parents to set up a follow-up appointment with the pediatric neurologist/epileptologist or primary care physician for the AED taper. If the child has a comorbid psychiatric diagnosis treated with an AED for mood stabilization, the parents should also schedule an appointment with the prescribing child psychiatrist to determine if the drug is indicated given the child’s newly confirmed conversion disorder diagnosis.

Make sure that the parents understand that you, the mental health clinician, will be the primary clinician involved in the child’s care and the contact person for when the parents have any concerns such as recurrent episodes or any other problems. Also, tell them that you will be in touch with the multidisciplinary team members including the pediatric neurologist/epileptologist, the primary care provider, and the school staff as needed.

Advise the parents how best to explain PNES to their other children, the extended family members, and their friends using the following script: “Suzy has a rare type of seizure-like episode (use the term that the child and the parents feel comfortable with), but they are not medically dangerous to her. The doctors at … . Hospital are experts in diagnosing and treating this type of problem. It will take time for Suzy to get better with the new treatment.”

Revisit the need for psychoeducation as often as needed, especially if the child continues to experience episodes and/or if the parents demonstrate any signs of resistance to treatment. The checklist below highlights the main points of the parent psychoeducation (Fig. 4.1).

Fig. 4.1

Parent psychoeducation checklist

Psychoeducation for the Child (Fig. 4.2)

Clarify what the child understood about the PNES diagnosis from the feedback session. It is often necessary to go over the explanation several times using developmentally appropriate language. If the child does not appear to understand what the illness is, talk about the mind-body connection and its role in PNES. Remind the child about the stressors and difficulties the child mentioned during the psychiatric/psychological evaluation. Encourage the child to ask questions and let you know if your explanation is not clear enough. Let the child know that, if he/she is interested, you can provide the child with the few online resources designed for youth with PNES (see Appendix A).

Fig. 4.2

Child psychoeducation checklist

Use the name the child chose to refer to his/her PNES episodes. Describe the short-term and long-term treatment goals and how they will be achieved in developmentally appropriate language. Inform the child that you will be the child’s therapist and that you will also see the parents to help them learn how to help the child. Assure the child that you will work with the school to facilitate the child’s reintegration to school and resolution of school-related problems that are stressful for the child.

Also, explain to the child that the pediatric neurologist/epileptologist will gradually reduce the AEDs added for the episodes but not those given for seizures due to epilepsy. If the child is on an AED for mood stabilization, the prescribing child psychiatrist will decide if there still is a need for AEDs to stabilize the child’s mood.

Ask the child what she/he wants to tell peers about the condition. Suggest that the child use a script similar to the one you discussed with the parents: “I have a type of seizures (use the term that the child chose) that are not dangerous. The doctors at … Hospital are real experts in these types of problems, and they said it will take time for me to get better.”

Psychoeducation for the Child’s Clinicians

Inform the clinicians about the few websites with information about PNES (see Appendix A). If the physicians were not involved in the diagnostic work-up, describe the child’s symptoms and illness course to date. Discuss the difficulties the parents might have accepting this diagnosis and/or their fear that “something might have been missed” in the diagnostic work-up. This will help the medical professionals understand why the parents might call them rather than you about recurrent episodes. Suggest that they redirect the parents back to you for the ongoing management of the child’s episodes if the parents call them to report additional episodes.

Recommend discontinuation of AEDs, unless the child has epilepsy and/or is taking these medications for mood stabilization. But emphasize that after the changes in AEDs, the involvement of the pediatric neurologist/epileptologist (or primary care provider) is essential for your work with the family and school staff. In fact, there should be at least one or two follow-up appointments with these clinicians to support the family in the initial phase of treatment, remind them about the medically benign nature of PNES episodes even if they recur, and assure successful transition from medical to psychiatric treatment. The prescribing child psychiatrist should manage AEDs prescribed as mood stabilizers.

Continue to update the clinicians on the child’s progress and parents’ acceptance of PNES diagnosis. Encourage them to work with you on advocating for the child to resume a regular routine and return to school first on a part-time and then on a full-time basis. Together with you, they should assure the parents that the child’s condition is treatable.

Psychoeducation for the School Staff

Before the child returns to school, obtain the appropriate consents from the child (12 years and older) and the parents for release of the medical, psychiatric, and personal information required to communicate with the school staff. Provide the school staff (principal, nurse, and child’s teachers) with links to the few websites about PNES (see Appendix A). Write a letter to the school (see Appendix B) describing the child’s PNES episodes, treatment plan, and how to manage the episodes at school. The letter should also include information about the child’s psychiatric, cognitive, and social-functional deficits that require school-based assessment and intervention. Discuss the need for regular contact between a school representative and you to ensure two-way exchange of information about the child’s episodes and functioning at school.

Short-Term Treatment Goal 1 Summary: Psychoeducation

Psychoeducation, the first step in the initial treatment phase:
- Helps the parents and the child understand that PNES is a psychiatric and not a medical illness
- Facilitates the transition from medical to psychiatric care
- Strengthens your rapport with the child and parents and encourages their engagement in treatment
Provide psychoeducation separately to the child and parents to ensure the child’s confidentiality and provide a safe milieu if the parents express negative feelings
Psychoeducation should include information on:
- The diagnosis of conversion disorder and the relationship between emotional and physical symptoms
- Short- and long-term treatment goals and how they will be achieved
- Your role as the therapist in the treatment
- How to discuss the condition with others
Encourage the child and parents to discuss their concerns with you, and provide additional psychoeducation as often as needed
Psychoeducation for the other clinicians ensures their involvement in the treatment and should include information about and resources for PNES, the current status of the child’s PNES episodes and parental acceptance of the diagnosis, the treatment plan, and the need for an ongoing collaboration
Psychoeducation for the school supports the child’s return to regular routines and should include information about and resources for PNES, a letter to the school describing the child’s condition, the treatment plan, and how to manage the episodes at school.

Short-Term Treatment Goal 2: Development of Rapport

In order to establish your therapeutic relationship with the child and the parents, conduct their initial sessions separately. Rapport with the parents helps them be open to your support during the difficult initial treatment stage. It also ensures that they will use the behavioral approach needed to control the child’s episodes and begin to share with you family and other stressors that might play a role in the child’s PNES and in their relationship with the child. The rapport you establish with the child helps the child trust you and be receptive to the behavioral treatment approach to reduce the frequency of the episodes. It is also essential for the child to agree to be in therapy.

Techniques for Building Rapport with the Parents

Ask the parents to describe the episodes from their own perspective, even if you have already heard this. This will help you understand how they experience the child’s illness and their level of acceptance of the PNES diagnosis. Sharing your concern and empathizing with them about the episodes and what they are going through assures them that you are sincerely interested in what is happening to their child and to them. Your empathic and nonjudgmental approach also allows them to begin to explore what stressors and negative feelings might impact their child’s functioning.

If the parents disagree among themselves about the PNES diagnosis and its management, clarify the reasons for this, and help them mediate and resolve their disagreements. In doing so, you model practical “therapeutic” skills that they can use for discussing disagreements between themselves and with their children. Reassure the parents that they will find it easier to accept the PNES diagnosis as the behavioral techniques for management of the episodes begin to work and the child’s episodes become more infrequent.

Assuage parental guilt by clearly stating that they are not to blame that the doctors took so long to figure out the PNES diagnosis. This is a rare disorder, and most MDs do not have the expertise to make this diagnosis. Explore the parents’ cultural, religious, and social background, and use culturally sensitive language when providing psychoeducation and during the therapy sessions.

Emphasize that the parents are part of the “treatment team” and that you need them to be your co-therapists. This approach empowers them so that they can effectively help the child manage his/her episodes using your behavioral instructions. The parents should also understand that you need them as your co-therapists for the long-term therapy of the child. Schedule weekly appointments, but if necessary, work with the parents as often as twice per week until they are more comfortable managing the episodes. By providing continuous support during this difficult period, you establish your role as the primary provider for the child’s treatment. This will encourage the parents to call you first rather than the neurologist and primary care physician when an episode occurs. Your frequent appointments with the parents also provide you with information about possible stressors that might have triggered ongoing episodes.