The first seizures can be a very scary time for teens and their families. People don’t know what is happening, who to see and may not even know what information to share with the doctor. Or maybe events have been going on for a long time, but parents didn’t know they were seizures? When people don’t understand what they are facing, expectations about seizures, treatment options and the future may not be realistic. Thus, the first steps in learning to manage seizures should focus on observation and recording of seizures and associated symptoms. What is seen or experienced by the teen, family members and caregivers on the front line (e.g. school nurse, pediatrician, coaches or camp counselors) may affect all other decisions made. Table 3 offers examples of what to look for during a seizure. How seizures are written down is often a matter of personal preference. Some people like to write full descriptions, others like to use calendars or checklists. Recording can be done on paper or using technology such as personal digital assistants or computer calendars. When the diagnosis is not clear, whichever system can give the most detailed information is usually best. Once the seizure type is known, a simplified version can be used to count how frequently seizures occur, if any changes have happened, and whether any factors make the seizures better or worse. For example, people whose seizures occur more frequently at times of stress would want to record periods of stress along with times of seizures. Teens whose seizures occur at a specific time of day or month should note if seizures start occurring at different times than usual.
Tips for Observing Seizure
PERSON’S BEHAVIOR
BEFORE EVENT
• When event occurs
• Possible triggers
WHAT HAPPENS DURING EVENT
• Level of awareness, alertness
• Speech and understanding
• Thinking, remembering, feeling, perceiving
• Sensations – see, hear, taste, smell, feel
• Facial expression
• Muscle tone
• Movements – jerking, twitching
• Automatic or repeated movements
• Walking, wandering, running
• Falling
• Color of skin, sweating, breathing
• Loss of urine or bowel control
WHAT PART OF BODY INVOLVED
WHAT HAPPENS AFTER EVENT
LENGTH OF EVENT
• When returns to normal activity
Source: By Orrin Devinsky, M.D. Seizures and Teens: Sorting Out Seizures