Gelastic seizures have been shown to begin in the HH lesion and removing (or otherwise damaging or ablating) the HH can cure seizures. Until recently, HH with epilepsy was considered not treatable, since surgery on the hypothalamus was considered too dangerous. However, several surgical options have been developed that have proven to be quite effective…
For many students with HH, starting a new school year can be very stressful. For many parents and caregivers, it can mean the drama associated with IEP meetings, 504 Plans, and dealing with new teachers – begins all over again. For many students, of all ages, with HH – one of the greatest challenges in…
MEET OUR DC FAMILY FORUM SPEAKERS – SANDRA CUSHNER-WEINSTEIN In this series, we will introduce you to the experts inside and outside of the HH community who will be presenting at the DC Family Forum on December 3rd. Please meet Sandra (Sandy) Cushner-Weinstein who has a long history of designing programs, directing health organizations,…
In June 2017, Epilepsia, The Official Journal of the International League Against Epilepsy (ILAE), published a Special Issue titled: Hypothalamic Hamartomas and Epilepsy. Sincere thanks to international experts and HH Medical Advisory Board members Drs. Jean Regis, J. Helen Cross (Chair) and Jack Kerrigan for editing the supplement and bringing it to fruition. The…
School has started and summer is over. The leaves will start changing colors and the end of the year will be here before we know it. For us here at Hope for HH, it is time to start focusing on the final details of this year’s Family Forum in Washington DC on December 2-3. If…
Hypothalamic Hamartomas can be very difficult to diagnose for many reasons. Gelastic seizures may be misinterpreted as normal childlike behavior or laughter. They may also be diagnosed as colic, or acid reflux, and sometimes they may be thought to be autistic tendencies or simply something unexplainable – as in just a quirky child! One of…
MEET OUR DC FAMILY FORUM SPEAKERS – AMY KAO In this series, we will introduce you to the experts inside and outside of the HH community who will be presenting at the DC Family Forum on December 3rd. Please meet Dr. Amy Kao an Epileptologist and the Director of Dietary Therapies Program of the Comprehensive…
I have so many mixed feelings as I write this blog today! I get the chance to reflect a bit on the amazing life and career of an exceptionally gifted pediatric neurosurgeon, but I also am here to announce to our HH community that he will no longer be working miracles on our loved ones.…
MEET OUR DC FAMILY FORUM SPEAKERS – CARRIN BRANDT Please meet Carrin Brandt who is a Licensed Marriage and Family Therapist (LMFT) with over 16 years of professional and personal experience in working with families who have children with epilepsy and other medical conditions. Carrin will be leading a roundtable discussion on HH & FAMILY DYNAMICS.…
One of our favorite organizations, CURE (Citizens United for Research in Epilepsy) is assisting Johns Hopkins in promoting its EpiWatch research study which will collect data about seizures and seizure treatment. The intent of EpiWatch is to provide those with epilepsy a means to track seizure activity, medications, and possible triggers or side effects as…