Bridging the gaps in shared LGS care

They may see an orthopedic physician. They may have a pulmonary doctor — that, their primary care. They have all these doctors. And I think, in the modern era, all of us are kind of online — the electronic health systems. And I think patients often assume that because of that, we’re all communicating.

But I think, actually, we’re not communicating near as well as they might think. With that, because yes, many of those notes are in the electronic system, but not all of us, for example, can access other people’s electronic systems. There may be a firewall that I can’t access that note.

So I don’t know what they said. I think this is where being organized and prepared for a visit, if they have something important going on, say, from an orthopedic standpoint, for them to mention that to me at the beginning of visit: You know that we’re going to have major hip surgery next month.

Is there anything that, you know, from my standpoint, we need to do different with the medicines, or how do we take them around surgery — those kind of things. I love it when we have a primary care physician that’s actively involved.

But I have to admit, with a lot of these complex patients with LGS, they’re just very nervous to make much input or changes because they’re complicated patients. So there’s maybe not the coordination from the PCP that we all would love to have between kind of specialists.

So as a neurologist, I personally like that when parents come in and kind of tell me these are critical things, or if they just say, “You know what? Our pulmonary doctor is happy where we are. Orthopedics are just going to see us in a year.

Neurosurgeries said we’re fine for a year. There’s nothing going on.” Even if it’s just literally that quick. At least I know, OK, we’ve covered all the bases. It literally took me less than a minute, you know, to get that from. So being prepared and kind of having that information ready is huge.