Anup Patel, MD, section chief of pediatric neurology at Nationwide Children’s Hospital, explained how care for patients with Lennox-Gastaut syndrome has changed throughout the pandemic.
Lennox-Gastaut syndrome (LGS) is often characterized by early childhood seizures, developmental delay or cognitive impairment, and multiple seizure types, including tonic, generalized, and non-convulsive status epilepticus, among others. Like many other chronic disorders, the care of these patients has been severely impacted by the COVID-19 pandemic.
As the school year begins, the impact of not receiving the same amount of special care will greatly patients with LGS, according to Anup Patel, MD. At-home learning is just 1 of the many obstacles the pandemic has created while affecting a number of other quality of life features such as socialization and the ability for caregivers to take respite. Patel, the section chief of pediatric neurology at Nationwide Children’s Hospital, feels as though there are a lot of takeaways to look at when evaluating the impact the pandemic has had on caring for patients with LGS.
In an interview with NeurologyLive, Patel provides insight on the challenges that these patients have faced and how they have had to overcome them. He also sheds light on the issues plaguing caregivers and the increasing use of technology and telemedicine in the standard of care.
Anup Patel, MD: Unfortunately, kids and adults with LGS have a higher tendency to be treatment resistant or have treatment-resistant epilepsy, which means they often will have seizures that cannot be controlled with medications. Whether these are anti-seizure medications, surgeries, devices, or even dietary therapies. Therefore, their seizure burden, or the amount of seizures these patients have, tend to be higher than many other patients with epilepsy. Additionally, kids and adults with LGS often have comorbidities, or accompanying syndromes or diseases. Many of these require home nursing or long-term care. They have an increased probability of not being able to live independently, and therefore puts a challenge and burden on the caregivers longitudinally. The other big issue is that these children and adults can have increased health care utilization from all of their problems, which can ultimately tax their families financially. Therefore, it’s important that we do our best to try to get the treatments to be as best they can be in order to minimize seizure burden and help overall quality of life.
Children and adults with LGS have unfortunately had some negative ramifications with the COVID-19 pandemic. The first being school. Those that did attend school in person were suddenly shifted to a virtual model. It is very difficult to create a curriculum for some schools for these children because they have such unique and special needs. The other issues in regard to that is that there are opportunities for the caregivers to get a respite from the 24/7 care that’s required when these kids are attending school in person. Now that’s taken away. The other part is that socialization is still important, no matter who you are, how old you are, or what epilepsy syndrome you have. That again, was unfortunately taken away during the pandemic. With that though, I will say therapy was sometimes delayed but we were able to shift that to telemedicine. In some cases, it was very helpful.
Telemedicine has been a huge advantage to many of my patients with LGS largely because the barriers that we previously had in place were lifted with the pandemic. That then allowed me to provide virtual care for the first time without having the parent or caregiver bring that child into our healthcare facility. There are a lot of challenges with that. Many of these children are in wheelchairs, and it’s a lot of work to get them out of the house, in the car, down to the hospital, and into the parking. It can go on and on. Suddenly all of those barriers were taken away, and I was able to have a conversation and still provide the quality of care that they needed. For many children and adults with LGS, their neurological examination doesn’t change much over time. Therefore, the majority of the visit is spent understanding the history. This includes talking to the caregiver about: what are the active issues? How many seizures? What is the frequency of the seizures? What are the other symptoms they may or may not have? A lot of that is just me talking to them. The other benefit I’ve had with telemedicine is it allowed me to have a window into their houses. I really like that because it gives me an opportunity to see firsthand some of these things they talk to me about in the clinic. For example, they will tell me about challenges in getting a proper accessible wheelchair ramp. Now, they’re able to show me what is, or even share some of the personal benefits of their home. If there are certain situations or places within the house that the child likes, then we go there, and we get to do that together. I really enjoy that.
The other thing that telehealth has allowed us to do is have a more focused conversation. In a home setting, there’s potentially multiple caregivers that can help care for the patient. Therefore, sometimes I’ll do the examination with the family and the child will go be with the other caregiver. This gives me a chance to have a conversation with the mom and dad in a very quiet, controlled environment. That caregiver can now focus without having to worry about caring for their child. It’s been good in that sense. I like to point out some of those silver linings that the pandemic has had. Obviously, we’re all struggling. The other issue I worry tremendously about in addition to school, is the financial impact. Many of these families have been affected like many of us have. We haven’t seen specifically where COVID-19 has affected LGS patients in a negative way. However, I will say any kind of illness can make it more likely for you to have seizures, and therefore we try to keep our kids healthy. One of the benefits of the pandemic is that these kids and adults have been relatively healthy. We’re not just limiting the exposure of the COVID-19 virus, but also preventing other viruses by wearing masks or not going out in the public as much. Overall, they’ve been healthier, which has translated to potentially an opportunity to have less seizures and improve quality of life. But it’s a balance, we want them to get outside and try to live as much of a normal life as possible. Trying to find that right balance is something we’re still trying to work towards.
Transcript edited for clarity.