Event Description
Are you a vision teacher or orientation & mobility specialist working with students, mentoring teachers in the field, or helping teams? Do you want to learn more about students with epilepsy who have had VNS, hemispherectomy, or other types of epilepsy surgery?
Please join the Pediatric Epilepsy Surgery Alliance for our live virtual school training session. This training will help vision educators understand the medical and functional effects of epilepsy surgery in childhood – large resective or disconnective procedures like hemispherectomy, single or multiple lobectomies or disconnections, corpus callosotomy, or neuromodulation devices. This training will focus on the impacts of epilepsy and epilepsy surgery on a child’s vision and mobility. We will also address other areas of impact, as these children can be quite complex and may need myriad supports.
This training session will cover:
- An understanding of ongoing seizures and drug-resistant epilepsy,
- The different surgeries/procedures and their descriptions,
- The impact(s) of the various procedures:
- visual impairments and how they affect orientation and mobility, visual processing, and learning to read;
- mobility challenges;
- hearing and listening concerns;
- common behavioral challenges;
- issues with cognitive processing;
- social skills;
- symptoms of hydrocephalus and seizures;
- accommodations and strategies related to each impairment.
Meet your trainer: Monika Jones, JD, CNP
Ms. Jones is the visionary founder and executive director of the organization. She is:
- Principal investigator: Scientific Symposium on rehabilitation after hemispherectomy under a grant from the National Institutes of Health (2014);
- Principal investigator: Research meeting on functional outcomes after large resective/disconnective pediatric epilepsy surgery (2019) held in 2019;
- Principal investigator: Global Pediatric Epilepsy Surgery Registry;
- Co-Author:
- Disparities in Multi-Disciplinary Rehabilitation after Cerebral Hemispherectomy: A Patient-Centered Report from the Global Pediatric Epilepsy Surgery Registry;
- Etiology and Age Modifies Subjective Visual Function After Cerebral Hemispherectomy;
- Long-term patient reported outcomes of visual field defects and compensatory mechanisms in patients after cerebral hemispherectomy
- Endocrine dysfunction after pediatric epilepsy surgery: a report from the Global Pediatric Epilepsy Surgery Registry
- Knowledge gaps for functional outcomes after multilobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019;
- Functional cognitive and language outcomes after cerebral hemispherectomy for hemimegalencephaly;
- Epilepsy Benchmarks IV: Limit or prevent adverse consequences of seizures and their treatments across the lifespan;
- Orthopedic impairments after hemispherectomy
- Epilepsy community at an inflection point: translating research toward curing the epilepsies and improving patient outcomes
- Member, CVI (Cortical Visual Impairment) CoLab (with C. Roman Lansky, G. Dutton, Perkins School for the Blind);
- Member: Education Committee, Perkins School for the Blind; Board of Directors, Council of Parent Attorneys and Advocates; Rare Epilepsies Network Steering Committee; Epilepsy Leadership Council; Infantile Spasms Action Network;
- Mother to a child who had hemispherectomy at three months old; has met over 800 children who have had epilepsy surgery.
Event Details
Date: February 10, 2023
Time: 1:00 pm – 3:00 pm
Location
Zoom
Registration Required? Link