Children's epilepsy resource for Families

Resource site:

About the Paediatric Epilepsy Network NSW

 

The Paediatric Epilepsy Network New South Wales (PENNSW) was established to formalise the interaction between the many different groups involved in caring for children and adolescents with epilepsy. The mission of the Network and the purpose of the website are to improve the standard of care and quality of life for each child or adolescent living with epilepsy across NSW. The PENNSW website received funding for its establishment from NSW Child Health Networks and NSW Kids and Families (NSW Ministry of Health). The site does not host or receive funding from advertising. Members of the PENNSW Website Editorial Committee (see below) authored the information available on this website, following rigorous consultation with key epilepsy personnel and families affected by epilepsy, and in reference to evidence-based literature.

 

The PENNSW website provides information for children and adolescents living with epilepsy and their families, as well as clinicians involved in patient care. Navigation between the family and clinician resources is possible by selecting the appropriate tab at the top right corner of the screen.

 

The information for families is designed to complement, not replace, the relationship between a patient and his/her own physician. The resources for families include information on diagnosis and treatment of epilepsy, safety, first aid, lifestyle, coping with epilepsy, and dealing with emotions.

 

For clinicians, the website provides key information on approach to diagnosis, epilepsy syndromes, medications, safety, issues of driving and pregnancy, and management of first seizure and epilepsy. Standardized documents for event recording, drug planning, and emergency seizure management for schools, day-care care and respite centres, are provided.

 

 

tHE PENNSW Website Editorial Committee:

Associate Professor Annie Bye

Doctorate of Medicine, Bachelor of Medicine/Bachelor of Surgery. Fellow, Royal Australasian College of Physicians.

Dr. Annie Bye is a Senior Staff Specialist (Neurologist and Epileptologist) and Head of the Paediatric Neurology Department at the Sydney Children’s Hospital (SCH), Randwick. Dr. Bye has over 20 years’ experience working in epilepsy and is the current Administrative Head of Epilepsy Services and a member of the Epilepsy Society of Australia Education Committee. She was elected Vice President of the Epilepsy Society of Australia from 2010-2012. Dr. Bye is an appointed Associate Professor with the School of Women’s and Children’s Health (Faculty of Medicine) at the University of New South Wales. She has been a contributing author on 70 peer-reviewed scientific papers and two paediatric book chapters, and has been an invited speaker at over 70 Conferences and National Meetings. She has received $972,000 in health-related funding grants to date, as well as considerable funding support from non-grant bodies.

 

 

Dr. Rob Slade

Bachelor of Medicine/Bachelor of Surgery, Diploma of Paediatrics. Fellow, Royal Australasian College of Physicians.

Dr Rob Slade currently serves as a Staff Specialist in General Paediatrics at Mona Vale Hospital. He was previously employed as a Staff Specialist at the SCH and was the Chief Resident Medical Officer in 2010. He was Convenor of the PENNSW Steering Committee during establishment of the Paediatric Epilepsy Network and former Editor of the PENNSW website.

 

 

Fleur Le Marne (Editor)

Master of Clinical Neuropsychology, Bachelor of Social Science (Psychology)(Honours), Bachelor of Business. 

Ms Le Marne is currently employed within the Complex Epilepsy Team as the Epilepsy Intervention and Evaluation Coordinator in the Department of Neurology (Sydney Children’s Hospital, Randwick). She is a registered psychologist with the Psychology Board of Australia and has experience working across a range of quality Health Improvement projects. Ms Le Marne is a Conjoint Lecturer with the School of Women’s and Children’s Health (Faculty of Medicine) at the University of New South Wales. She is currently the PENNSW site Editor.

 

 

Erin Beavis

Certificate in Paediatric Intensive Care and in Midwifery.

Erin Beavis has worked as a Clinical Nurse Consultant at Sydney Children’s Hospital (SCH), Randwick since 2008. Previous to this she was employed at SCH in the Children's Intensive Care Unit, Paediatric Emergency, and in the Neonatal Emergency Transport Service. Ms Beavis holds certificates in both Paediatric Intensive Care and in Midwifery. She is currently a member of the Complex Epilepsy team at SCH (Randwick), dedicated to the delivery of the highest standard of care to children with epilepsy and their families.

 

 

Anne Maree O’Brien

Graduate Diploma in Paediatric Nursing

Anne Maree O’Brien is a former Clinical Nurse Consultant of the Sydney Children’s Hospital (SCH), Randwick. She has over 27 years of paediatric nursing experience and is a former member of the Complex Epilepsy team. Ms O’Brien started working in Neurology in 1989 firstly as a Clinical Nurse Educator and then as Nursing Unit Manager. After nine years in Neurology, she managed the Medical Oncology Day Unit and subsequently, the General Medical Isolation Unit. Prior to working in Complex Epilepsy, Ms O’Brien was the SCH after-hours Nurse Manager for 10 years. Ms O’Brien played a key role in establishing the Paediatric Epilepsy Network (NSW) and provided education and facilitated communication between the many different groups involved in epilepsy patient care.

 

 

Contact us:

If you have a query about the website or the resources it contains, please email:

 

paediatricepilepsynetworkNSW@gmail.com

 

Please note, emails received at the above address are reviewed periodically by site administrative staff.  No individual medical advice or referrals can be provided via the above address.  If you have a medical question relating to your own or another person's health, please speak with your treating physician.

 

 This page was first published in March 2012 and last modified in August 2014. 

 

Resources for ClinisiansResources for Families

 

 

 

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

SSL Secure

Valid XHTML 1.0 Strict

   

Makayla's Story
Living with Epilepsy
Epilepsy Explained