Have you ever noticed that your car never seems to make that knocking sound when you take it to the mechanic for a tune up?
Parents of children with epilepsy sometimes experience a similar problem explaining their children’s seizures to their epileptologist.
Dr. Deborah Holder, director of epilepsy and clinical neurophysiology at Akron Children’s Hospital, knows the problem all too well.
Parents report the child is seizing, sometimes as many as 200 seizures a day. The physician asks a key question about the seizure to discern if it’s a focal epileptic seizure or a generalized tonic seizure, and the parents aren’t sure how to answer.
The answer may be the key to diagnosing the type of epilepsy the child has and the amount and type of medication to administer.
“Journaling seizures is an important way for our patient families to communicate what’s going on with their kids,” said Dr. Holder. “We often have a question about the type of seizure a child is experiencing. And then, of course, then the kids don’t actually have a seizure during our appointment so we can’t see it to properly diagnose it.”
She recommends using a smart phone to video record seizures as a great way for us to see what’s going on, and using a free app, such as Seizuretracker, can be a great tool for both families and physicians,” she said.
- Time and visually record seizures as they happen.
- Allow the user to videotape seizures and upload them to YouTube.
- Mark time during a recording.
- Keep an organized library with the ability to create detailed reports that are easy to share with physicians.
One of the best things about Seizuretracker, according to Dr. Holder, is that parents then have one central place they log the child’s information. And quite often they have their phone with them when events occur and are able to capture them.
She also feels that Seizuretracker gives parents a better sense of control over the unpredictability of seizures.
“When a child seizes, quite often the parent tries to log the type and duration of the seizure on whatever is the most handy scrap of paper within reach,” said Dr. Holder. “It is easy to lose those pieces of paper by the appointment time and then the diary is incomplete. Seizuretracker helps parents stay organized and the printout reports are very informative. I can add them right to the patient’s medical record.”
While good record keeping is important, Dr. Holder cautions parents not to get too wrapped up in the record keeping.
“If your child is having more than 200 seizures a day, it isn’t really important to know that there were actually 217 seizures. We are looking at patterns, so parent shouldn’t go overboard and feel they have to chronicle everything.”