My son has a number of health issues and sometimes it is difficult to tell what is going on. His epilepsy gets confused with non-epileptic seizures and his tics. The following is a response plan that a neuropsychologist wrote to assist the school with dealing with these events.
Take a look at the plan and tell me what you think. I would really appreciate the feedback. We are about to revisit this document in the near future. Some of this document is irrelevant because it was written when it was difficult for my son to go to school and includes some steps to deal with that situation. Today, my son is in school but there are constant interruptions due to the non-epileptic seizures. In the last week I have had to rush to the school 3 days out of the last 7 days.
I will be honest with you I am not confortable with some aspects of this plan. The topic of non-epileptic seizures is a very sensitive topic. We have experienced school personnel interpreting these events as being purposeful by my son. As a result of this type of accusation my son’s anxiety raised and then percipitating more movement events. It was a vicious cylcle. This year he started a new school and I was hoping we wouldn’t run into the same behavior on behalf of the school.
I would appreciate you taking a moment to read this. I need all of the help I can get.
The attending neurologist working with the patient has determined that he has episodes of non-epileptic events that may look very similar to seizures, but are not actually caused by abnormal brain activity. The patient will need to be evaluated to determine if these events are some form of movement disorder, Tourette’s disorder, or if they are Non-epileptic seizures. These events are not epileptic in nature and therefore do not require the medical intervention that would be necessary if the patient were having an epileptic seizure. These episodes are not purposeful or intentional. Though they are not epileptic seizures, they still are a seizure. Depending upon the origin of these events (which again is still being investigated) they are likely exacerbated by stress or anxiety. In this situation the mind is causing the body to respond physically to these negative emotions, similar to people who have stomachaches or headaches when nervous or stressed. If patient’s events are determined to be tics associated with Tourette’s, anxiety can play a large role in how long these events last. Again, the patient does not have control over these movements, and they can be exacerbated by stressful situations.
It is essential that family members and school staff respond consistently to these events in order to minimize their impact on daily functioning. Regular visits to the school counselor are often helpful in providing additional support during school for social stress. It will be important for the patient to have designated times in which he can use relaxation techniques learned in therapy in order to reduce the number of events he is experiencing. If these events are determined to be non-epileptic seizures, it is possible that he could learn ways of preventing them altogether in therapy. It is important for him to practice his relaxation techniques throughout the day. This will require that he miss some class (usually in the guidance office), but it will eventually allow him to experience fewer events.
Description of the patient’s events: The patient’s events are characterized by burning in his eyes and jerking of his extremities. Sometimes the jerking movements appear as extreme thrashing, eratic movements. At times he hold his breath.
Again, he is still undergoing evaluation to determine exactly what these events are. What we do know is that they are not dangerous to him, and will not result in any long-term physical difficulties. It is important to help define them and get them under control, so that they do not further impact him emotionally. It has been noted that his events worsen when he is under stress or anxious. The patient’s events can last from a few minutes to hours. He often has difficulty focusing on anything else when he experiences the movements. However, distraction has helped to reduce the severity of the movements. Therefore, providing the patient with distraction during these events, and not focusing on the movement, could actually help them be less severe. While it is difficult to urge the patient to continue normal activity during events, this is actually the best way to help reduce or eliminate them altogether.
Whether these events represent tics, movement disorder, or non-epileptic seizures; helping to keep the patient in as regular a routine as possible is essential. If he does not maintain a routine this will only increase his anxiety, and can cause additional difficulties to develop. It may be necessary to alter his schedule to reflect the difficulty he is having at this time. His regular day may only allow for one hour at school and then home schooling for the rest of the day. During the time that he is at school it will be important to engage him in normal activities and to keep him there even if he has one of his events until the designated time that he will leave. This predictability will help the patient feel that he knows what to expect and hopefully help to reduce his anxiety.
The following section describes how to respond to the patent and to other students if the events happen while at school:
1. If you see that the patient is having an event or if he states that he is worried he may have one, talk to him briefly about how he is feeling.
2. It is alright to give him brief reassurance and to tell him what you are going to do in response to the event, such as: a. “You are having one of your events. It’s ok. You will be fine. Right now you need to have some time to calm down. I am going to stay close by but step away so that you can have some time to relax.”
b. “You’re having an event, but you are ok and safe. I am going to turn off the TV, radio, etc. and give you some time to rest.”
c. After this brief reassurance in is best to stop interacting with him until the event has stopped.
d. If this occurs in class and does not last for an extended amount of time, it may be best just to watch him closely but continue on with class.
Once the event is over, it may be helpful for him to leave for a few minutes to calm or rest. Let him decide if he needs this.
3. Ensure that he is in a position where he will not get hurt. It is not recommended that he be moved very far during the event. If he is always sent out of the room, this will draw attention to his situation and may increase his stress and anxiety. Therefore, if he can stay in the room after the event, this is recommended.
4. If he falls, keep him away from sharp objects, do not place something in his mouth, he cannot swallow his tongue. This won’t likely happen because he does not tend to fall with his events.
5. It is best to avoid holding or restraining during an event.
6. If others are present in the room, if possible, they should be instructed to return to their normal activities without interacting with him until it is finished.
a. We encourage you to use language like “XXXX is having an event, but he is okay. Let’s let him be, I’ll take care of him while you return to your work.”
b. If the person is at home, all others should leave the room during an event except for the person who will monitor him for safety.
7. It is not appropriate to give Jamal medications, to send him home from school, to send him away from class, call the paramedics, give him a prize to stop, or allow him to avoid certain activities in response to an event.
After the event:
1. Note what happened just before the event started to happen. Is there anything that could have caused an increase in stress?
2. It is really important that “normal” activities typical for the patient be resumed as soon as is possible to reinstate normalcy and minimize disruption to his daily life. Neutral, calm responses to these events will help him to feel calm.
3. If he appears stressed, worried, or fearful, it may be necessary for him to have a brief period of time before he resumes the activities that he is involved in (i.e. maybe a ten minute break, but he should not need more than that).
4. He should not be removed from an activity or asked not to participate, because this will give him the signal that something is wrong, or that he cannot do something. He is still capable of engaging in normal daily activities, and this should be encouraged.
This plan was developed collaboratively by the patient’s medical/psychosocial team on the epilepsy unit of the XXXX Hospitals and Clinics of XXXX