Links to organizations and resources that have helped us navigate this journey. Some I found early on, some came later. All of them are worth knowing about.
Organizations
These are the organizations involved in my son’s care and in supporting our family.
Parenting
And
A children’s book about the permission to feel two things at once. Scared and excited. Worried and hopeful. For kids who are holding more than one feeling and don’t know what to do with that.
Good Inside
Great book on how to raise kids who feel good inside. Whether you’re a new parent or a seasoned veteran, this book provides helpful guidance and breaks down parenting challenges by chapter for easy reference.
For Goodness Sex
As my 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.
Financial 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.
Epilepsy Awareness
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.
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.