Staying Knowledgeable, Reducing Stigma of Pediatric Epilepsy

M. Scott Perry, MD, Medical Director, Neurology, Co-Director of the Jane and John Justin Neurosciences Center; Medical Director, Tuberous Sclerosis Complex Clinic

M. Scott Perry, MD

As our understanding of pediatric epilepsy has evolved over the years, new developments and advances are continuing to occur at a rapid pace, leading the field one step closer to the concept of precision medicine and transforming the state of care.

With a bright future ahead, there’s still many misconceptions and education gaps that need to be addressed. As it’s often challenging to keep up with the constant progress in the field, M. Scott Perry, MD, stressed the importance of staying up-to-date with literature, research and clinical work in an interview with NeurologyLive.

To help promote awareness and denounce stigmas, Perry, the Medical Director of Neurology and Co-Director of the Jane and John Justin Neurosciences Center at Cook Children’s, advised physicians to continue advocating for patients, accepting nothing less than no seizures and side effects.

NeurologyLive: What should primary care physicians be cognizant of prior to referring patients to a specialist?

M. Scott Perry, MD: I think throughout epilepsy there’s a lot of examples where primary care providers probably could be more informed, and some of that I don’t think has changed much since I was in training. Medical students as a whole don’t get a whole lot of exposure to neurology and that so then carries over to their primary care time because neurology lives as this mystery sub-specialty of medicine and people are either very interested in it or have a fear of it, and then you don’t learn much about it.

Some of the more important things that primary care providers need to be aware of are infantile spasms as a seizure type. It’s one that’s really important because we often see that is not recognized early on that it is a seizure and being such a devastating seizure that it is, the earlier you recognize it and get it treated, the better the likely outcome. There’s been a bigger push recently to increase education of infantile spasms in the primary care world, so I think that’s really important.

We’ve [Cook Children's] published a series of things I call Primary Steps for Primary Care, where we go over things like this, where we list common things that would come to a primary care provider’s office and steps that ought to be taken before you send them to the neurologist. I did one just recently on staring spells because all kids stare, but how do you know when it’s a seizure and when it’s not?

What’s the best advice you can give to your colleagues?

M. SP: My best advice is fairly generic. It’s very tough for us to keep up with what’s going on in the epilepsy space, but you have to keep reading the journals and you have to keep reading the information sent to you because it is changing incredibly quickly. Especially from the genetic standpoint, every month there’s something new found, and if you’re not keeping up with it you will fall behind very quickly in this space.

I think the physician audience should remember that they need to remain advocates for their patients, especially in the epilepsy space. There’s still a lack of awareness of this disorder and a lot of stigma associated with it and so I think physicians need to remain active not only in trying to treat and cure epilepsy, but not becoming complacent, accepting nothing less than no seizures and no side effects. We need to advocate for our patients all the way around.

Can you discuss misconceptions you’ve come across in this space?

M. SP: There’s always misconceptions and stigmas. As far as misconceptions in the epilepsy space, epilepsy surgery still remains a misconception. As valuable as epilepsy surgery is and its potential to cure patients, the number of people that are candidates for epilepsy surgery are not the amount that are referred for epilepsy surgery. There are a lot of kids out there who have intractable epilepsy and would be great candidates and aren’t being sent for evaluation for a number of reasons, one is the misconception of the risk, one is the misconception of the benefits and one is the misconception of who’s a candidate. People have different ideas of what intractable epilepsy is, and they think you have seizures 2 or 3 times a year you’re well controlled, but if you ask a patient, especially as they get to adult and driving age if you have 2—3 seizures a year, is that controlled? Absolutely not—you can’t drive a car, it affects your work. For kids and a developing brain, any seizures are bad seizures so the more we can get them controlled the better. I think that’s probably one of the biggest misconceptions from the provider standpoint.

What do we know now that we didn’t 5—10 years ago?

M. SP: The biggest thing we know now in my opinion compared to years ago is the genetic basis of many epileptic encephalopathies that we didn’t know before. Before the advent of more easily obtained genetic testing, you basically had a lot of kids with really bad epilepsy who didn’t have a real reason. We have increasingly discovered more and more genes that are responsible for these epileptic encephalopathies, and in some of them, it’s incredibly important to treatment because now that we know about the gene, we can better understand the kinds of medicines that might be better or the dietary therapies for instances in GLUT1 deficiency. We can now develop more precise treatments; we’re getting closer to the concept of precision medicine.