James W. Wheless, MD, a neurologist, discusses the importance of balancing seizure management with quality of life for people living with LGS. He explains why family input is essential when making treatment decisions and evaluating how a person is doing beyond their seizures.
Transcript
For the quality of life, I mean, we are focused on the medical aspects with these patients, which is often driven by the seizures because they have such high seizure frequencies. That often kind of overwhelms everything else in the visit.
But I think if they’re prepared, we have enough time to say, “How are they doing otherwise?” And that otherwise really is the quality of life issues.
And I always tell folks it’s the balancing act. I can stop every seizure, but your loved one may be comatose. There’s no quality of life there.
So, it’s that balancing act of, “OK, let’s get rid of the dangerous big seizures. That’s our real target. The other ones hopefully will improve with it, but let’s balance that with quality of life.”
And I think really we have to rely on the family’s input a lot for that quality of life. Because again, I just have that person in front of me for maybe 15 or 20 minutes. I’m not seeing their whole day.
I may not see the times when they’re really alert, perky, they’re smiling, they’re interacting with their siblings. I may not see that at all in the office.
But the parents, that’s a huge aspect of their quality of life. So I really need that input into kind of the rest of their day. And is that still going as well as it can, you know, for them?
