Home | Take On Epilepsy

Here you’ll find helpful resources compiled from around the Web, stories, videos, and articles written by medical professionals, caregivers, and epilepsy experts like yourself.

Brought to you by Greenwich Biosciences.

Getting the Financial Information You Need

Your hub for information about:

Federal programs such as Social Security Disability (SSDI) and Supplemental Security Income (SSI)
State programs (including waivers)
Grants (for items like seizure monitors, specialized chairs, travel, and much more)

Access Help

Connecting With
the Community

A place to access multiple advocacy foundation and charity groups, or connect and share with others living with rare epilepsy on our Facebook page.

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Living With
Rare Epilepsy

Ways to help improve day-to-day life, including caregiver tools, ideas for family fun, emotional support resources, and information about genetic testing and counseling.

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Advocacy

Teaser Image

Lessons From a Special Needs Mom Turned Special Education Teacher

As a parent of someone with a severe disability, I know firsthand the emotional ups and…

Susan McBrine

Advocacy

Joey

Joey’s Song: How music connects, supports, and inspires in the fight against epilepsy

When the lights go out and the crowd falls silent, I can finally exhale. All the months…

Mike Gomoll

Relationships

Marla & Family

Creating a Circle of Support: What We Can Learn From Female Elephants

When my baby was born with a rare disease, I was thrown into a scary new world of unkno…

Marla Werline

Emotional Health

Balancing Your Needs

Balancing Special Needs With Your Own Needs:

What if we told you that one way to combat the stress in your already overpacked life i…

Brad and Karen Thompson

SUDEP

SUDEP article image

SUDEP: What you don’t know can hurt you

How the family behind the Danny Did Foundation learned about SUDEP and embarked on a mi…

Mike & Tom Stanton

SUDEP

Sally Schaeffer's Family Take on Epilepsy and SUDEP

Destigmatizing SUDEP: One mother's mission

One mother’s mission to honor her daughter by increasing awareness and education around…

Sally Schaeffer

Behavior

Classroom Take on Epilepsy

The Language of Behavior: What are they trying to tell us?

Growing up, I had a cousin who was diagnosed with Batten disease, a rare nervous system…

Taylor B.

Education

Take On Epilepsy IEP Blocks

IEP MAINTENANCE 101: Dealing with disputes and reaching resolutions

In their first article as Everyday Experts, Dena Hook and Lauren Shillinger spoke to Ta…

Dena Hook and Lauren Shillinger

Travel

Mobile Home for Family Road Trip with Child with Epilepsy

Road Rules Redux: Notes from the Carlin Family’s trip cross-country

As you may have read in my recent contribution as an Everyday Expert, my wife, Dawn, an…

Steve Carlin

Advocacy

Child and Mascot at Dravet Conference Take on Epilepsy

Reflections on the Dravet Syndrome Foundation’s 3rd Professional Biennial Conference

As you may have read in my previous contributing article as an Everyday Expert, my wife…

Steve Carlin

See All

Dravet Syndrome (DS)

A rare, treatment-resistant, severe type of epilepsy with frequent and/or prolonged seizures. It typically begins within the first year of life.^1,2

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Lennox-Gastaut Syndrome (LGS)

A rare, severe form of epilepsy with multiple kinds of seizures, including tonic (stiffening) and atonic (loss of muscle tone). Most LGS seizures are tonic and occur while sleeping.^3-7

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Tuberous Sclerosis Complex (TSC)

A genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidneys, skin, and lungs. It also causes seizures of many types to occur.⁸

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Infantile Spasms (IS)

A rare epilepsy-related seizure disorder seen in early infancy. The average age of onset is under the age of 1, and about one-fourth of infants with this disorder will stop having seizures within 1 year of their first seizure.^9-13

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Sudden Unexpected Death in Epilepsy (SUDEP)

The most common epilepsy-related cause of death, SUDEP affects 1 out of every 1000 with epilepsy each year. Deaths due to SUDEP are unexpected and occur in individuals with epilepsy who are otherwise healthy.^14-15

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References:

Dravet C. The core Dravet syndrome phenotype. Epilepsia. 2011;52(suppl 2):3-9.
van Dam VS, Korff CM. Dravet syndrome: an update. Swiss Arch Neurol Psychiatr. 2013;164(5):153-157.
Arzimanoglou A, French J, Blume WT, et al. Lennox-Gastaut syndrome: a consensus approach on diagnosis, assessment, management, and trial methodology. Lancet Neurol. 2009;8(1):82-93.
Chevrie JJ, Aicardi J. Childhood epileptic encephalopathy with slow spike-wave: a statistical study of 80 cases. Epilepsia. 1972;13(2):259-271.
Bourgeois BFD, Douglass LM, Sankar R. Lennox-Gastaut syndrome: a consensus approach to differential diagnosis. Epilepsia. 2014;55(suppl 4):4-9.
Arzimanoglou A, Resnick T. All children who experience epileptic falls do not necessarily have Lennox-Gastaut syndrome…but many do. Epileptic Disord. 2011;13(suppl 1):S3-S13.
Panayiotopoulos CP. Epileptic encephalopathies in infancy and early childhood in which the epileptiform abnormalities may contribute to progressive dysfunction. In: The Epilepsies: Seizures, Syndromes and Management. Oxfordshire, UK: Bladon Medical Publishing; 2005:137-206.
Northrup H, Krueger DA; International Tuberous Sclerosis Complex Consensus Group. Tuberous sclerosis complex diagnostic criteria update: recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference. Pediatr Neurol. 2013;49(4):243-254.
Go CY, Mackay MT, Weiss SK, et al; Child Neurology Society; American Academy of Neurology. Evidence-based guideline update: medical treatment of infantile spasms. Report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society. Neurology. 2012;78(24):1974-1980.
Hrachovy RA, Frost JD Jr. Infantile spasms. Handb Clin Neurol. 2013;111:611-618.
Pellock JM, Hrachovy R, Shinnar S, et al. Infantile spasms: a U.S. consensus report. Epilepsia. 2010;51(10):2175-2189.
Hattori H. Spontaneous remission of spasms in West syndrome: implications of viral infection. Brain Dev. 2001;23(7):705-707.
Hrachovy RA, Glaze DG, Frost JD Jr. A retrospective study of spontaneous remission and long-term outcome in patients with infantile spasms. Epilepsia. 1991;32(2):212-214.
Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-1031.
Harden C, Tomson T, Gloss D, et al. Practice guideline summary: sudden unexpected death in epilepsy incidence rates and risk factors: report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology. 2017;88(17):1674-1680.

The views and opinions expressed in articles on this site are those of their respective authors and do not necessarily reflect the views of Greenwich Biosciences or any of its affiliates. The authors of these articles have experience in the topics they are writing about. Although the advice, tips, ideas, approaches, or resources mentioned in these articles worked for their respective authors, they are not necessarily endorsed by Greenwich Biosciences and may not be appropriate for you. Talk to your/your child’s doctor before making changes to any treatment plan.