Symptoms and effects of hypothalamic hamartomas vary from case to case. For some management of epilepsy is the overriding concern, others have endocrine issues to address, for many the legacy of the epileptic seizures can include developmental delay, behavioural issues, pervasive developmental disorders, ADHD and ASD. We have tried to include within this section a range of books touching on each of these areas. If you have been helped by a book that is not on this list we would be glad to add it to our “library.”
Pediatric Epilepsy Surgery (2016) This a book written by and for professionals; however, there are several very good chapters on HH including Chapter 21 Hypothalamic Hamartaoms by Dr. John Kerrigan; Chapter 34 Surgical Procedures for HH by Dr. Georg Dorfmuller plus chapters on cognition, psychosocial and other outcomes.
- Epilepsy Patient & Family Guide, Orrin Devinsky (2007). This book is intended for adult patients and caregivers. It describes seizures, AEDs, surgical interventions and diet. It also includes legal and financial issues concerning epilepsy. A few brief references to gelastic seizures and HH are included on pages 43, 46-47 - however this content is brief and basic. There is a good drug glossary in this book.
- Seizures and Epilepsy in Childhood: A Guide, John M. Freeman (2002). This is a very comprehensive book written by doctors from the Johns Hopkins Pediatric Epilepsy Center and covers everything from why seizures occur, to diagnosing and treating epilepsy, as well as coping and living with epilepsy. It is formatted as an encyclopedia like reference book. There are 2 brief pages dedicated to gelastic seizures and hypothalamic hamartomas in the section on why seizures occur (p. 43-44). The gelastic seizure section is very basic and not particularly enlightening, but the rest of the content is good.
- Growing Up with Epilepsy, Lynn Bennett Blackburn (2003). This book focused more on practical aspects of raising a child with epilepsy - disciplining a child with seizures, supporting social development and independence and navigating and negotiating the education system to be an effective advocate. It also includes a model Individual Education Plan (IEP) which can be used as a jumping off point for creating your own. It also explains the types of learning disabilities that might occur in a child with seizures.
- Children with Seizures: A Guide for Parents, Teachers, and Other Professionals, Martin L. Kutscher (2006). A practical book about types and causes of seizures. Medical concepts and terms are explained in less technical language.
Epilepsy and Children
- Lee, the Rabbit With Epilepsy, Deborah M. Moss (1989). Great book to explain epilepsy to children. This is a book written in child appropriate language with very colorful illustrations. It describes a Rabbit's first seizure, visit to the doctor, diagnosis and treatment. It is also good for siblings.
Special Education and Learning Disabilities
- Late, Lost and Unprepared, A Parents Guide to Helping Children with Executive Functioning, Joyce Cooper-Kahn and Laurie Dietzel (2008). Many individuals with HH also have deficits in the areas of Working Memory and Executive Functioning. This extremely helpful guide explains what Executive Functioning is and the role it plays in successfully managing everyday life. For individuals with HH, there are often significant challenges in cognitive functions such as planning and organizational skills, time management, impulse control, self-monitoring and working memory. These challenges may be mild for some and extreme for others, but all will have some impact daily living. Part One of this book is titled “What You Need to Know” and Part 2 is titled “What You Can Do About It”. The suggested strategies and interventions are succinct and can easily be put into place both in the home and school environment. The references are extensive and very helpful.
- Special Needs Advocacy Resource Book, Rich Weinfeld (2008). This book focuses on navigating school systems and executing IEPs and 504 plans generally. It describes the laws related to special education, classroom and evaluation practices and provides insight on how to be the best advocate for your child.
- The Complete IEP Guide – How to Advocate for your Special Ed Child, 4th Ed., Lawrence M. Siegel (2005). This is an extremely helpful guide/workbook that walks you step by step through the IEP process. It includes instructions, strategies, lots of resources and most forms you will need to advocate successfully. It is an excellent resource to review every time you revise or update your child’s IEP as well!
- From Emotions to Advocacy – The Special Education Survival Guide, Second Edition, Pam and Pete Wright (2009). This workbook is similar to The Complete IEP Guide. It contains comprehensive, easy to follow instructions and strategies. It also includes worksheets, forms and sample letters. This book also goes a little more in-depth on dealing with the common parent-school conflicts and understanding how to improve meeting outcomes.
- Your Child's Strengths, A Guide for Parents & Teachers, Jennifer Fox (2009). This book focuses on maximizing kids strengths in activities and relationships. Also learning to empower teachers and parents to change their mindset from negative (need to “fix”) to positive.
- Smart Kids with Learning Difficulties, Rich Weinfeld (2006). This book presents success strategies for bright kids with learning disabilities that rise from aspergers, ADHD, dyslexia, autism and other learning obstacles. Focus is on helping parents (and educators) identify smart kids, that may also be learning disabled, and developing accommodations to address challenges while empowering students to meet their potential.
- Executive Skills in Children and Adolescents, Peg Dawson and Richard Guare (2004). Individuals with neurological issues often experience difficulties with the cognitive processes involved in executive function – including difficulties with planning and organization, time management, task initiating/follow through, impulse control and working memory. This book is written more for the teacher/school psychologist; however, it provides a good insight on how to transition the skills from school to home and life in general.
- Social Skills Activities for Special Children, Darlene Mannix (2009). This workbook is geared towards grades K-5 but may have good application for older kids with learning difficulties. There are lessons designed to address appropriate social behavior in a variety of situations, and lots of activity sheets you can do with your child to make the learning fun. The workbook is designed for teachers but is easy to work one on one with any child. The workbook provides a list of “thinking questions” related to each topic that help direct discussions as well.
- Activating the Desire to Learn, Bob Sullo (2007). This book provides parents and kids practical ways to overcome the common struggles with learning and motivation. It encourages kids to see their school experience in a positive light rather than focus on the hardships. Provides strategies for increasing internal motivation in the classroom at any age.
- Helping Your Dyslexic Child, Eileen M. Cronin Ph.D. (1997). Many children with HH have learning issues similar to dyslexia when it comes to learning to read, spell and do math problems. This book helps parents and kids to understand learning differences and ways to overcome them.
- Anxiety-Free Kids, Bonnie Zucker (2008). This book helps parents encourage their kids to become happy and relieve anxiety and phobias. The book includes both a practical guide for parents and a fun workbook for kids to help themselves.
- How to Handle a Hard-to-Handle Kid, C. Drew Edwards, Ph.D. (1999). A parent and teacher’s guide for addressing more positive ways to deal with difficult kids.
- From Defiance to Cooperation, John F. Taylor Ph.D (2001). Good source for specific, and easy to implement suggestions for improving life with defiant, angry and discouraged kids, teens or young adults.
Other Related Topics
- My Stroke of Insight, Jill Bolte Taylor (2006). A true story about a brain scientist’s personal journey to healing following a stroke and the understanding that different is not always bad. While it doesn't address HH, gelastics or epilepsy - it may help you appreciate your child in a new and more positive light.
- The Brain That Changes Itself, Norman Doidge, M.D. (2007). This is an interesting book about how science is discovering that the brain is not the stagnant structure once thought to be set by age 6. It covers the subject of neuroplasticity – the brain’s ability to adapt to injury and trauma. It is an easy to understand mixture of theory, research and stories of patients beating the odds. It gives hope to people who were once thought to have irreparably “bad wiring”.
- Raising Boys, Steve Biddulph (2008). This book is a great guide for understanding boys and addressing their needs as males. It also talks about how boys process information differently as well as the effect testosterone plays in shaping male children.
- The Secret of Happy Children, Steve Biddulph (2002). Written by a psychologist, yet full of positive insight on why kids do what they do and ways we can encourage them and ourselves to be more positive. This is an encouraging read and very practical.
- 10 Conversations You Need To Have With Your Children, Shmuley Boteach (2006). Rabbi Shmuley has been seen on TV in his show Shalom in the Home and on Oprah. This book is designed to inspire parents to work to develop positive relationships and open communication with their children of all ages.