I thought it would be helpful to create a page where I could share links to the organizations and resources I found helpful to educate myself about epilepsy and that have helped my son and our family live a full and happy life with his diagnosis.
Organizations
These organizations are involved with treating my son’s epilepsy and educating me as a parent of an epileptic child.
Life Skills
We use GreenLight to teach our son about money management and saving. It’s also great for tracking chores and jobs. If you sign up using this link, you are eligible for a $30 bonus.
Books
And
“And” has a special meaning in our house, and my wife wrote this book to share its meaning with the world.
Growing Up With Epilepsy
This book serves as a good reference for raising a child with epilepsy. From the different seizure types, side effects, behavioral and developmental issues, it provides good information and guidance on how to find support. It’s a good book to keep on a shelf and refer to occasionally, especially if you’re new to the epilepsy journey.
Gordy and the Magic Diet
“Gordy and the Magic Diet” tells the tale of a young boy that starting on a restrictive diet. Although not specifically for keto, this book makes the idea of a special diet relatable for young children.
Dings
“Dings” tells the story of a family whose son develops epilepsy and there were many times while reading this book when I saw my own family in the pages. Books like this serve as a reminder that we’re not in this alone, that others have been through many of the same things, and that there is a community out there that we can call on for support.
A Smell of Burning
“A Smell of Burning” tells the story of the author and his brother’s struggle with epilepsy. Colin mixes in scientific and historical data with his personal story to create a powerful book that I recommend picking up.
Seizure Mama and Rose
Mother and daughter team up in blog and book to help families manage epilepsy.
A Mind Unraveled
The compelling story of an acclaimed journalist and New York Times bestselling author’s ongoing struggle with epilepsy—how, through personal resilience and the support of loved ones, he overcame medical incompetence and institutional discrimination to achieve once unthinkable success.
For Goodness Sex
As our son moves into puberty and young-adulthood, this book and the resources around it have been very helpful to give us the language to help him navigate this very confusing time.
Gray Matters
The brain and neurology have been interesting to me since my son was diagnosed with epilepsy. This book had a great mix of the brain, brain conditions, surgery, and stories from the field.
Disclosure: Some of the links above are affiliate links meaning that, at no additional cost to you, I will earn a commission if you decide to make a purchase. Please know that I have experience with all of these companies, and I’m recommending them because of the product or service they offer, not because of the small commission I might make if you purchase something. A portion of all proceeds generated from this site will be donated to The Epilepsy Foundation and the Children’s Hospital Of Philadelphia to support epilepsy research and treatment.