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.

Videos

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: Challenges Associated With Lennox-Gastaut Syndrome

“We as a collective group of epilepsy providers need to have the knowledge and education and speak the same language and same facts.”

 at the 2019 International Epilepsy Congress to discuss how the health care community who prescribes cannabidiol (CBD) to patients with epilepsy needs to do a better job of communicating the facts about treatment.

Both doctors and pharmaceutical companies need to present accurate and clear information regarding CBD when discussing methods of treating epilepsy, Patel said, including the difference between pharmaceutical-grade CBD versus over-the-counter products containing CBD available at a dispensary or online. In addition, he touched on how better communication between doctors and patients can result in more safe and effective treatment of epilepsy.

In this interview, Patel provided a call to action to the health care community to become more educated on CBD so that they can be more prepared when patients come to them with questions.

The associate professor of clinical pediatrics and neurology at Ohio State University and section chief of pediatric neurology at Nationwide Children’s Hospital stresses the importance of broadcasting correct information to the public concerning epilepsy. 
 

Anup Patel, MD: Transmitting Epilepsy Information Correctly

“You still see that there are false medical claims on CBD and how safe and effective it is for everything.”

At the 2019 International Epilepsy Congress, Anup Patel, MD, addressed a wide range of topics regarding the treatment of severe epilepsy, including questions surrounding whether treatment with cannabidiol (CBD) should be more commonplace across the epilepsy spectrum or reserved for severe syndromes such as Dravet and Lennox-Gastaut syndrome.

Patel analyzed issues with overprescribing pharmaceutical-grade CBD, as well as the availability of over-the-counter CBD products, noting that less severe cases of epilepsy should be treated with more traditional pharmaceutical drugs since CBD can be associated with elevated liver enzymes, as well as other adverse effects. He detailed how patients and caregivers can be easily misguided by information or lack thereof on CBD products.

, Patel expressed his concern with the lack of well-rounded studies on CBD but remained optimistic that there is room for the drug to potentially be beneficial in other diseases.

The section chief of pediatric neurology at Nationwide Children’s Hospital discusses the realities parents face when exploring CBD to treat epilepsy.

Anup Patel, MD: The Realities of Cannabidiol Treatment for Epilepsy 

"It's really interesting because those are all based on machine learning and some technology that's available but more enhancements are coming and more updates are on their way, so it's an exciting field and we think it's going to make a major impact on our treatment of epilepsy patients in the future."

At the 2019 American Academy of Neurology Annual Meeting in Philadelphia Pennsylvania, Anup Patel, MD, spoke with 

about the role of wearable technology in pediatric epilepsy.

Patel explained that the ultimate goal is to have a device that can detect seizures accurately with very few false alarms, if any, that can alert a caregiver or loved one of an epileptic seizure.

The section chief of neurology at Nationwide Children’s Hospital discussed some of the technology currently available. For Patel, the best wearable technology on the market is the Embrace Watch, which takes a watch-based approach to seizure detection and uses motion sensor accelerometry and a galvanic skin response. The Embrace Watch algorithm detects generalized tonic-clonic seizures over 90% of the time.

Another interesting device Patel discussed is an EMG-based device which captures the sensing of muscle twitches that occur during a generalized tonic-clonic seizure.

The last device Patel discussed is one made by Ceribell that captures EEG data and is predominately set in an inpatient or ICU hospital setting. The rapid response EEG algorithm is based on rhythm detection and can alarm and alert a non-neurology staff member that a person is in status epilepticus.

As more enhancements and updates are on their way, this technology has the ability to make an impact on treatment epilepsy and will become increasingly important as time goes on.

The section chief of neurology at Nationwide Children's Hospital spoke about the role of wearable technology in pediatric epilepsy, an area that has the potential to make a major impact on treatment.