The physician tells the parents that the team is well aware of how difficult the child’s uncontrolled seizures have been for the child, the parents, and the family. The team has reached a diagnosis and designed a treatment plan for the child. The physician should inform the parents that the findings of the psychiatric/psychological evaluation indicate that the child’s seizures are due to psychological causes and that the child has a disorder called psychogenic non-epileptic seizures or PNES. The clinician should help the parents understand that seizures in children can come from many causes including epilepsy, brain tumors, stroke, inflammatory disorders, and psychological causes. The clinician should add that the vEEG, psychiatric/psychological evaluations, and medical tests administered to the child confirm PNES and rule out these other causes of seizures. Before the mental health clinician explains what PNES is and how to treat it, the epileptologist/neurologist should emphasize the following for the parents:

If the child also has epilepsy, the physician should clarify that the child’s current seizures are due to psychological causes, not epilepsy or any other brain disorder. The clinician should describe for the parents what the child’s seizures due to epilepsy look like and what the child’s seizures due to PNES look like. The physician should explain that, whereas during seizures due to epilepsy, the vEEG showed epileptic activity that was not the case for the child’s current seizures.

If during the diagnostic evaluation the mental health clinician picked up that the parents are resistant to a psychological explanation for the child’s condition (“My child has only one problem, seizures”), he/she should communicate this to the pediatric neurologist/epileptologist who should modify the feedback. As previously described, the pediatric neurologist/epileptologist tells the parents that the team is well aware of how difficult the child’s uncontrolled seizures have been for the child, the parents, and the family. The team has reached a diagnosis and designed a treatment plan for the child. The physician should inform the parents that there is good evidence that stress can trigger seizures. For this reason, the mental health care provider is part of the epilepsy team and will explain the importance of stress and the child’s stressors. The clinician should describe the negative results of the vEEG (no epileptic activity during seizures) and other diagnostic tests. He/she should also explain that these negative findings suggest that the child’s seizures are not caused by brain disorders, such as a tumor, stroke, inflammation, or any other serious illness involving the brain.

You or the mental health clinician who conducted the diagnostic evaluation (referred to as you from hereon) should explain to the parents that people’s emotional experiences affect how their body feels. They probably know people who when stressed get headaches or their back, neck, or joints act up. There are those who get heartburn or stomachaches. Similarly, some children have physical symptoms when they are under stress or faced with difficulties and problems. Children with PNES have what is called a conversion disorder, which means that stress, difficulties, or problems are expressed through physical symptoms. When the stressors, difficulties, or problems go unsolved or continue, the increasing tension has nowhere to go and is channeled through the body into physical symptoms. In the case of their child, the physical symptoms are seizures.

Talk about the stressors the parents mentioned during the assessment. With the child’s permission, describe the stressors, difficulties, and problems the child reported. The parents might feel guilty because they were unaware their child has had these difficulties and did not help the child problem-solve. They might express anger toward the physicians who treated the child in the past because of all the wasted time during which the child continued to suffer due to uncontrolled episodes. Some parents vent about the school, the coach, or other individuals involved in triggering the child’s stress.

For parents who are resistant to a psychological explanation for the child’s condition, begin the feedback by talking about the impact of uncontrolled seizures on the child’s life and on the life of the family. If the parents’ resistance to a psychological explanation for their child’s disorder becomes apparent only during the feedback, describe the mind-body connection in terms of stress and medical illness in general with possible examples of headache; back, neck, and joint pain; gastrointestinal symptoms; and other physical symptoms. You should continue to focus on how stress can trigger seizures using the examples of stressors the parents gave during their interview. Also, inform the parents that often the child is unaware of what is stressing the child. So, the next stage of treatment will involve figuring this out and providing the child with ways to deal with stress. However, in the interim, you will help the child manage the physical discomfort due to the NES symptoms. This strengthens the child’s rapport with you and lays the foundation for better exploring the child’s stressors.

Sometimes, however, some parents, who previously denied any stress during the diagnostic interview, now open up and talk about possible stressors the child and family have faced. Encourage them to speak about the stressors, and provide positive feedback on the information you get. Fig. 3.1 describes some parents’ responses and how to address them.

Regarding comorbid psychiatric diagnoses, if the child has anxiety disorder and/or depression, describe these disorders to the parents and how they might be a result of the recurrent uncontrolled seizures, missed schoolwork, other extracurricular activities, or lack of treatment for the child’s underlying conversion disorder. If the child has attention deficit hyperactivity disorder (ADHD), explain how this disorder might contribute to or reflect the child’s undiagnosed and untreated learning problems and their possible role in the conversion disorder.

The physician and you should ask the parents if they have any questions on what has been explained thus far about the neurological and psychiatric/psychological aspects of the disorder. If the parents have accepted the PNES diagnosis, the team should describe the treatment plan and use the term episodes instead of seizures.