The Importance of Seizure Diaries, Blogs, and Being an Educated Consumer
Insights from a pediatric neurologist and fellow blogger
Have you ever heard the advertising slogan, “An educated consumer is our best customer”? The late Sy Syms was credited with creating the slogan to sell discounted designer suits. The slogan got us thinking about the importance of being educated about seizure disorders. Quite simply, being an educated patient, or caregiver, is one of the best ways you can help your healthcare team or the team of the person in your care.
This idea occurred to us after interviewing Dr. Anup Patel. He’s a neurologist at Nationwide Children’s Hospital in Columbus, Ohio, who treats children with epilepsy. We were speaking with him about how seizure diaries and blogs can help families who live with epilepsy. According to Dr. Patel, both can be educational tools—for patients and their caregivers, and for doctors, as well.
Keeping a seizure diary is “all about improving communication,” he said. “It allows everyone to be on the same page as to what’s going on with the child’s or patient’s seizures.”
It can be difficult to remember what happened a week or two before an appointment without writing something down. But what if you kept a record of the number of seizures that occur on each day, how long they last, and what time they occur? That gives a doctor “a visual representation of what’s going on,” Dr. Patel said.
Seizure diaries capture important seizure patterns
Recording seizures allows a doctor to see patterns, as in the case of seizure clusters. Dr. Patel said parents might not recognize that their child may have seizure clusters. Keeping a diary allows doctors to see a pattern and recommend a treatment to address those clusters.
He mentioned other patterns that provide a window into a person’s seizure disorder, such as seizures that occur at certain times of the day, or month, or when medications start wearing off.
One of the most common patterns he sees is when a person’s seizures regularly occur in midday. It may be that the morning medication wears off before the evening medication kicks in, Dr. Patel explained. “We sometimes use that as an opportunity to not change the medicine, but change the dosing schedule,” he said.
We wondered whether people who don’t keep a seizure diary are at greater risk of having their medication changed rather than adjusted. “Yes, that’s absolutely true,” Dr. Patel said. The opposite is true as well, he noted. People who are not doing as well as the doctor thinks they are may not have treatment changes that need to occur.
Dr. Patel encourages his patients to use seizure diaries (some do) and to bring them to their appointments (many forget). He added that he prefers electronic calendars because they can be downloaded or transmitted to a patient’s electronic health record.
Our takeaway was this: Use whatever seizure diary you like, but use one—and share it with your healthcare team!
How blogs can help
Dr. Patel also believes blogs can help raise seizure awareness. In fact, he himself is a blogger. His blog appears on 700 Children’s, a section of the National Children’s Hospital’s website, which is named after the hospital’s street address.
He said he started the blog to improve education and communication about epilepsy, and to make sure people were getting accurate information.
He often gets ideas for topics from discussions with patients or questions from caregivers. Often, the blog posts deal with misconceptions people have about epilepsy—including confusion about seizure clusters. “People have a varying understanding of what that means. I don’t think there’s a uniform definition, which makes it complicated,” Dr. Patel said.
Another misconception he has run into is that people mistakenly believe that nurse practitioners aren’t able to provide adequate epilepsy treatment. “It doesn’t matter what letters are behind someone’s name,” Dr. Patel said. “What matters more is their experience…their ability to access resources and other important sources of information.”
Dr. Patel has also found several misconceptions associated with the ketogenic diet. First, he said, people don’t realize how hard it is to follow the very high-fat/low-carbohydrate diet. Second, they also assume that diet means “safe” and “natural,” and third, they think the diet is for anybody with epilepsy. “It has a great role in the treatment of epilepsy for patients who are resistant to other known treatments,” he explained. He also noted that the ketogenic diet is very rigid and requires special medical care.
There’s another reason Dr. Patel blogs. It’s his chance to offer messages of hope to people with epilepsy and to those who care for someone with epilepsy.
“It provides an opportunity to reach out to say, ‘You’re great. You’re wonderful. Hang in there, and have hope,’” he said. “I think that’s an important message to get across.”
We couldn’t think of a better note to end on. Stay hopeful. Stay informed. Stay well.
May 16, 2015 | Categories: General