Anup Patel, MD

“If you look at, for example, focal epilepsy, there are over 20 to 30 anti-seizure medications and other treatments. If you focus on LGS itself, it’s getting much better over the last 10 years, but obviously, we don’t have as many options or bag of tricks so to speak, compared to some other epilepsy syndromes.”

 (CBD) oral solution, marketed as Epidiolex, for the treatment of seizures associated with Lennox-Gastaut syndrome (LGS) and Dravet syndrome (DS) for patients 2 years of age and older. The treatment became the first drug approved by the FDA to contain a cannabis-derived, purified drug substance, and was later expanded to include patients age 1 and older in August 2020.

The approval represented a major milestone for patients with LGS, which have not benefitted from a vast landscape of approved treatments in comparison to other epilepsy disorders. Researchers will wait to see whether fenfluramine (Fintepla; Zogenix), a highly anticipated drug that was approved for DS in June, will be the next major treatment for patients with LGS. Despite the limited number of options, the momentum within the community and among industry leaders has grown, especially over the past 15 to 20 years, according to Anup Patel, MD.

Patel, the section chief of pediatric neurology at Nationwide Children’s Hospital and associate professor of clinical pediatrics and neurology at Ohio State University, feels as though the growing awareness has allowed more companies to want to be invested in the disease. He sat down with 

 to share his thoughts on how to evaluate the LGS treatment landscape, and what needs to happen in the future.

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The section chief of pediatric neurology at Nationwide Children’s Hospital discussed his experience using some of the approved medications for patients with Lennox-Gastaut syndrome.

Anup Patel, MD: Evaluating the Treatment Landscape for Lennox-Gastaut Syndrome

"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 lot. It can go on and on.”

As the COVID-19 pandemic resulted in limited access to in-person care, clinicians were forced to adapt by accelerating the use of telemedicine. Despite the limitations, virtual care for patients with Lennox-Gastaut syndrome (LGS) has provided a number of benefits, including a direct look at the in-home setting and the elimination of issues that arise with commuting long-distance to a clinic.

Anup Patel, MD, section chief of pediatric neurology, Nationwide Children’s Hospital, feels as though the some of the limitations the pandemic has bestowed on the country have actually helped patients with LGS. He noted that patients appear to be healthier due to their cautious approach and increased use of masks when stepping outside. Additionally, the ability to have virtual visits greatly benefits those who are wheelchair bound, which make up a solid proportion of patients with LGS.

 to provide further detail into the advantages that telemedicine has offered for providing quality care and why conducting neurological examinations has actually been easier since the start of the pandemic.

The section chief of pediatric neurology at Nationwide Children’s Hospital spoke about the effect telemedicine has had on patients with Lennox-Gastaut syndrome throughout the COVID-19 pandemic.

Anup Patel, MD: Telemedicine’s Impact on Lennox-Gastaut Syndrome Care

"I think it’s a really important opportunity to raise awareness around LGS. Largely because a diagnosis of LGS does connect a family to great resources and organizations.”

Today, November 1, 2020, the world will come together and raise awareness for Lennox-Gastaut syndrome, a rare epileptic disorder that affects nearly 48,000 children and adults in the United States, and over 1 million worldwide. LGS constitutes between 3% and 4% of all children with epilepsy and 1% to 2% of all people with epilepsy.

Anup Patel, MD, section chief of pediatric neurology, Nationwide Children’s Hospital, is too familiar with the struggles that patients with LGS and those within the community face. There is currently no cure for LGS and there are even fewer treatments options available than for other rare epilepsies such as Dravet syndrome. Furthermore, between 30% and 50% of children with infantile spasms will develop LGS, and almost 80% to 90% of children will continue to have seizures into adulthood. Along with a mortality rate of 5%, those with LGS are 24 times more likely to die prematurely.

Patel, who also serves as the associate professor of clinical pediatrics at Ohio State University, has been well connected with the LGS community for years now. He sat down with 

 to provide prospective on what the day fully entails, and why continuous awareness can only bring about more benefit.

About Lennox-Gastaut Syndrome. LGS Foundation. 

The section chief of pediatric neurology at Nationwide Children’s Hospital provided his thoughts on raising awareness for Lennox-Gastaut syndrome on International LGS Day.

Anup Patel, MD: International LGS Awareness Day

"They have an increased probability of not being able to live independently, [which] therefore puts a challenge and burden on caregivers longitudinally.”

Lennox-Gastaut syndrome (LGS) is a rare form of epilepsy that develops over time with childhood seizures and often remains uncontrolled by treatments. Both children and adults with LGS share similar features that include seizures starting early in childhood, experiencing more than 1 type of seizure, and potentially having developmental delay or cognitive impairment.

LGS occurs secondary to many different causes including injury, brain malformations, infections, and genetic factors. Patients with LGS also may have more abnormal brain imaging and may develop their disorder from other epilepsies syndromes. Anup Patel, MD, associate professor of clinical pediatrics, Ohio State University, and section chief of pediatric neurology, Nationwide Children’s Hospital, claims there are a multitude of challenges these patients with LGS face in comparison to other epilepsies.

, Patel highlighted a few of the obstacles including the increased likelihood of being treatment-resistant, numerous occurring comorbidities, and economic costs that cover the care of living.

The section chief of pediatric neurology at Nationwide Children’s Hospital discusses some of the challenges that patients with Lennox-Gastaut syndrome and their caregivers face.

Anup Patel, MD

Articles

Anup Patel, MD: Evaluating the Treatment Landscape for Lennox-Gastaut Syndrome

Anup Patel, MD: Telemedicine’s Impact on Lennox-Gastaut Syndrome Care

Anup Patel, MD: International LGS Awareness Day

Anup Patel, MD: Challenges Associated With Lennox-Gastaut Syndrome