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  • LGS
    Forum
  • Minute by
    Minute
  • Navigating
    the Storm

The LGS Forum

This series features healthcare professionals and LGS thought-leaders as well as parents and caregivers of people with LGS discussing topics of interest to the LGS community. Choose from the menu of titles to the right.

Transition of Care

This installment of the LGS Forum focuses on the changes and challenges families may face as a child with LGS moves into and through adolescence and adulthood. The conversation covers the switch from pediatric to adult medical care, changing living arrangements, and financial and insurance issues.

Featured in the Transition of Care video:

E. Steve Roach, MD
Dr. Roach is a Professor of Pediatrics and Neurology at the Ohio State University College of Medicine in Columbus, Ohio. He is also Chief of Neurology at Nationwide Children's Hospital and President of the Child Neurology Society.
Dr. Roach has been a child neurologist for 30 years and lends his professional experience and expertise to our conversation.
Dr. Roach is a paid consultant of Eisai Inc.

Christina SanInocencio
Christina is the Founder and President of the LGS Foundation. Her brother was diagnosed with LGS when he was 3 (he is now 25). Christina brings her knowledge of LGS and experience of watching her own brother transition from childhood to adolescence and adulthood. Christina is a paid consultant of Eisai Inc.

Samuel DeMarcus Warren III
Samuel is the father and primary caregiver of DeMarcus, a 10 year-old boy who was diagnosed with LGS at age 3. Sam joins the conversation to share the story of his son’s brave journey from LGS diagnosis to today. Sam inspires with his devotion to DeMarcus and hopes to find out more about the transition process from our experts so he can be better prepared for the future.

Marlene O'Haire
Our moderator Marlene expertly guides the conversation and helps participants share their experiences and expertise around the transition process.

The LGS Forum

This series features healthcare professionals, parents of people with LGS, and more discussion topics of interest to the LGS community. Choose from the titles to the right.

The Ketogenic Diet As a Treatment Option

Our first installment of the LGS Forum features Eric Kossoff, MD, Medical Director of the Ketogenic Diet Center at Johns Hopkins Hospital in Baltimore. Dr. Kossoff provides an overview of the ketogenic diet and how it works. We also learn about the experience of one of his patients diagnosed with LGS.

Featured in the ketogenic diet video:

Eric H. Kossoff, MD
Associate Professor of Neurology and Pediatrics, and Medical Director of the Ketogenic Diet Center at Johns Hopkins Hospital in Baltimore. Dr. Kossoff lends his professional expertise to our discussion. Dr. Kossoff is a paid consultant of Eisai Inc.

Nadiya, Jill, and David
Nadiya is a beautiful 7-year-old diagnosed with LGS. She started the ketogenic diet at the age of 2. Jill and David are Nadiya's parents. They share Nadiya's journey with LGS from before diagnosis to the present. They inspire with their matter-of-fact, laser-focused approach to Nadiya's illness, and talk about challenges, successes, insights, tips, and more in a wide-ranging discussion.

Marlene O'Haire
Our moderator, Marlene, expertly guides the conversation and helps participants share their experiences and expertise.

Minute by Minute

Minute by Minute is intended to raise awareness of Lennox-Gastaut syndrome, a rare and severe form of epilepsy that accounts for as few as 1%-4% of cases of childhood epilepsy.

LGS is one of the most complex epileptic disorders to treat and manage. The documentary features two families living with LGS and offers perspectives from physician experts and patient advocates.

Physician experts John Pellock, MD, Chair, Division of Child Neurology, Virginia Commonwealth University, and Tracy Glauser, MD, Cincinnati Children's Hospital Medical Center, discuss the various approaches to treatment.

Patient advocates Patricia Gibson, MSSW, ACSW, Wake Forest University, who has worked extensively with families to provide education and resources to help them cope with LGS, and Christina SanInocencio, President, LGS Foundation, who has been passionately creating a voice for the LGS community, offer their perspectives.

Jeff Kennedy directed the film. Eisai Inc. produced this documentary in cooperation with the LGS Foundation.

John Pellock, MD, Tracy Glauser, MD, and Patricia Gibson, MSSW, ACSW, are paid consultants of Eisai Inc.

Navigating the Storm

When you hear the diagnosis of Lennox-Gastaut Syndrome (LGS), your mind may instantly race with questions. In this video, with the help of Dr. Glauser, we try to help you understand more about the disease, offer a list of questions you can ask your own doctor, and provide suggestions to help families dealing with an LGS diagnosis.

Introduction to LGS
In this video, Dr. Tracy Glauser provides an overview of Lennox-Gastaut Syndrome, offers a list of questions to ask your doctor, and provides suggestions to help families dealing with an LGS diagnosis.

Sleep
In this video, Dr. Tracy Glauser addresses the importance of sleep and shares tips with parents in assisting healthcare providers with identification of any sleep disorders.

Dealing With LGS and Behavioral Concerns
In this video, Dr. James Wheless addresses the complexity of behavioral issues and provides tips on what you can do as a parent.

Identifying a Team of Experts
When caring for a child with LGS, finding the right combination of health professionals to provide your child with optimal care can seem like a daunting task. In this video, you'll hear how to identify a healthcare team to best meet your child's needs, as well as information on additional LGS resources available online.

LGS: A Family Affair
A heartfelt, firsthand account of how LGS can affect family relationships, including those between parents, among siblings, and between parents and the rest of the children at home. Social worker Pat Gibson and David (a parent of a child with LGS) share insights and tips on managing the changes and challenges families might encounter.
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 Transition of Care

  •  Introduction
  •  Part 1: Perspectives
  •  Part 2: Looking Ahead
  •  Part 3: Assembling a Team for the Future
  •  Part 4: Residential Living Opportunities
  •  Part 5: Finances and Guardianship
  •  Part 6: Resources and Advice

 The Ketogenic Diet

  •  Part 1: What is the Ketogenic Diet?
  •  Part 2: A Labor of Love
  •  Part 3: How Does the Diet Work?
  •  Part 4: Progress and Precautions
  •  Introduction
  •  Symptoms
  •  Diagnosis
  •  Treatment
  •  Diet and Surgery
  •  Daily Life
  •  Health Care Team
  •  Community
  •  Education
  •  Looking Forward
  •  Introduction to LGS
  •  Sleep Hygiene
  •  Behavioral Concerns
  •  Identifying a Team of Experts
  •  LGS: A Family Affair
 
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