Jason Lerner MD, discussed the recently opened Adolescent Epilepsy Center at UCLA, a clinic that offers comprehensive care for teens with epilepsy.
Jason Lerner, MD
To provide more information about the recently opened Adolescent Epilepsy Center at UCLA, a clinic that offers comprehensive care for patients aged 12—20 with epilepsy, NeurologyLive spoke with director Jason Lerner, MD.
The center, honing in on the concept of treating the whole patient, is staffed by a multi-disciplinary team that includes psychiatrists, psychologists, occupational therapists, social workers, dieticians, epileptologists and nurse practitioners that collaborate to develop a plan ensuring each patient receives comprehensive treatment. Additionally, the pediatric specialists work closely with adult epileptologists or neurologists to guarantee a seamless transition into adulthood.
The Associate Chief of Clinical Pediatric Neurology and Director of the Pediatric Neurophysiology Lab at UCLA Mattel Children’s Hospital emphasized the importance of working with this team specialists to create a unique treatment plan for each patient, addressing a variety of different things, not just the seizures.
Jason Lerner, MD: It’s really seeing patients with co-morbidities, with these additional problems. The one story I always tell is that a girl that I was following through junior high and high school, never really able to get control of her seizures, finally, after she graduated high school we found the right combination of medications, some of the newer ones, and she was seizure free for the first time in like 8 years. When she came back to see me 3 months later, everyone was really excited, but when I saw her, her quality of life was worse than it had ever been when she was having seizures. She was still seizure free, but in controlling her seizures, her underlying anxiety which was there before, but not to the forefront and not causing a major problem, really came to the surface and it was to the point where she could barely leave the house, it was so bad. That was kind of like the final tipping point that child psychiatry is even more difficult to find, even more so sometimes than child neurologists.
The idea that we really need to be treating the whole patient not just their seizures, their seizures are important but it’s the whole patient that’s going to really improve the quality of life. Adolescence, it’s such a difficult time to begin with, with this stigma and difficulties in school, we really felt like it was important to bring a group together to look at the whole person. So, we have psychiatrists, psychologists, occupational therapists, social workers, dieticians, epileptologists, nurse practitioners, all in clinic together, everyone seeing the patient. And so, we’re kind of addressing a variety of different things and not just the seizures.
JL: About 12—20. The problem that we have and another reason that we put the center together is the transition from childhood to adulthood or adolescence to adulthood, it’s difficult in general, but then you have to transition to adult practitioners. Because epilepsy is such a difficult disease or poorly understood disease and a lot of our patients can be very difficult to control, have lots of medications, a lot of adult practitioners are hesitant to see our patients.
The other thought or idea is that we can really work on educating our patients, educating our families about epilepsy, about what their medications are, their diseases, how they get their medications and all that and then evaluate the diagnosis, if they have anxiety, if they have depression, the idea that we can really get our patients in a great place and so when they do transition to adult doctors they’re in much better shape than they were before, and then they also understand their disease more. I think giving them the education really can help empower them and help them fight the stigma associated with epilepsy too.
JL: It’s really bringing all the different disciplines—psychologists and psychiatrists while we have often access to them or often have places to refer patients to, very rarely are they actually in clinic with us—and that’s really bringing everyone together, especially psychiatrists with all these comorbidities like depression, anxiety, and ADHD, we’re looking at anti-seizure medication, an anti-depressant, plus a stimulant, and it’s really tough to control and consider all the interactions as we’re doing all this. To have us together in clinic talking about the interactions, coming up with a good plan, I think is essential.
We’re bringing in our occupational therapist and I don’t know of another clinic in the country that has an occupational therapist specifically for epilepsy. Her goal is really to work on this transition and help the patients transition from adolescence and childhood to adulthood.
We’re developing a whole transition curriculum, so basically the idea is every few years there’s a checklist for every other year and things at that age we’d expect them to know. By age 12, they need to know what epilepsy is, by 14 they need to know what their type of epilepsy is, by 16 they need to know their medications and doses, you know that kind of idea, so by the time they’re 20, and we’re transitioning them to an adult epileptologist or neurologist they really have a good handle on their disease.
JL: A couple of the other things we do, one is workshops, educational workshops for the community. The first one is going to be in October about individualized educational program, IUPs, which a lot of our patients have.
The other thing that we’re doing is support groups, and they’re a lot of kids that we diagnosis and we ask “Have you ever met anyone with epilepsy? Do you know anyone with epilepsy?” Most of the time they say no, or their great-great-grandfather or uncle or something had it.
Epilepsy is much more common than people realize but because of the stigma, a lot of people don’t talk about it. It’s kind of this hush-hush thing and in schools there have been multiple kids in each school that have epilepsy but they’re not going to be talking about it, and so we need to bring these kids together so they know they’re not alone, and so bringing them together in support groups to show that there are other kids out there their age, like them, going through the same struggles in school, can really be helpful and again empowering for these teens.
That’s really our big push, bringing the epilepsy community together. We do a lot with the Epilepsy Foundation too for that, to really bring all this information to the patients, bring patients together, to help them with all that.