Paediatric HIV Service
Table of Contents
The Paediatric HIV Service, Positive Kids and Camp Goodtime
About the HIV Service
The Paediatric HIV Service at Sydney Children's Hospital works with children, families and pregnant women living with HIV. It is the only service of its kind in Australia and provides medical management, psycho-social support, research, consultation and education.
HIV Service Team Members
- A/Prof John Bernard Ziegler (MB BS, FRACP, MD, DipHEd, FAAAAI)
Professor Ziegler is Head the Department of Immunology and Infectious Diseases and of the HIV Service, and is Associate Professor of Paediatrics, University of NSW. He was cofounder of the Australasian Society for HIV Medicine, its first secretary and has served as President. He chairs the Immunoglobulin Users Advisory Group for NSW Health. He has served as consultant on perinatal transmission (breast feeding) of HIV to WHO in Geneva and on management of paediatric HIV in Malaysia and has been a UNICEF consultant on paediatric HIV to Indonesia.
Publications include more than 120 peer reviewed papers, invited papers and book chapters in clinical immunology, rheumatology, HIV medicine, paediatric pain, 14 reports for government and other bodies.
Major contributions in HIV include the first description of mother-to-infant transmission of HIV during breast feeding and the definition of the risk of HIV via breast feeding during maternal seroconversion. Dr Ziegler was instrumental in the setting up of surveillance mechanisms for perinatal exposure to HIV.
Current research interests include genetics of congenital immune deficiency disorders, and epidemiology and diagnosis of severe food allergy in Australian children. HIV research objectives include studies to define the frequency, character and specificity of anti-HIV immune responses present in infants and children exposed perinatally to HIV and genetic and other factors affecting the risk of perinatal transmission. He has compared the methods used in Holocaust denial with those used in attempts to refute a relationship between HIV and AIDS. He has studied the use of humour in medical teaching.
- A/Prof. Pamela Palasanthiran (MBBS, FRACP, MD)
Staff Specialist in Infectious Diseases, Sydney Children's Hospital, Randwick.
Conjoint Associate Professor, University of New South Wales (UNSW)Pamela Palasanthiran is a staff specialist paediatric infectious diseases and a member of the Paediatric HIV Service at the Sydney Children's Hospital (SCH). She has been involved with paediatric HIV for 20+ years, having first worked as a clinical researcher in the early years of HIV in Australia with A/Professor John Ziegler in 1989. She completed her Doctorate of Medicine (MD) in perinatal HIV in 1994. Thereafter, she trained at Duke University Medical Centre in the USA and was privileged to train under some of the early clinicians in paediatric HIV like Professors Catherine Wilfert and Ross McKinney. She has seen the evolution of HIV over the past 2 decades and considers herself fortunate to be part of one of the most exciting and positive times in medical history. She enjoys working with the many families and children we follow at SCH - with some of her best moments being that of having a 'chat' with the adolescents!
- Angela Miller (BSW, MSD)
Hi, my name is Angela and I'm a senior social worker with the Paediatric HIV Service at Sydney Children's Hospital. I've been with the service since 2003. Prior to commencing at the hospital I worked with kids in long-term care, child protection and disability services in Sydney and London. I really love the variety that this role provides and hope to further develop our support based services for kids and families living with HIV over the next few years. I'm also really interested in working with services in other parts of the world as they develop psycho-social services within their HIV programs.
- Larrisa Mackey (Relieving Clinical Nurse Consultant)
Hi, my name is Larissa and I am the Clinical Nurse Consultant for Paediatric HIV Service. I have worked at Sydney Children's Hospital since 2002, for the first 7 years I specialised in Haematology and Oncology developing many extensive skills in high acuity nursing, education, leadership and communication within a large multidisciplinary team. In January 2009 I joined the Immunology and Infectious Diseases team as a Clinical Nurse Consultant. In this role I have dedicated my time in Paediatric HIV with a strong interest in caring and treating for positive teenagers as well as closely working with HIV positive mothers in preventing Mother to Child Transmission of the virus.
- Dr Tom Snelling (Infectious Diseases Consultant)
Tom is a doctor who has specialised in treating and managing children with complicated infections. His main interests are in developing effective ways to stop the spread of infectious diseases, for example by vaccination. Before working at the Sydney Children's Hospital, Tom worked in the Northern Territory where he studied the impact of vaccination on preventing gastroenteritis.
- Julie Coutelas (Dietician)
Julie has worked as an Accredited Practising Dietitian for the past ten years. She has worked with adults living with HIV for the past three years and joined the team at Sydney Children's Hospital in 2009. Julie describes the opportunity to work with the children attending clinic and their families in this role as very rewarding. Julie is passionate about promoting the influence of good nutrition on long and short term health, particularly during the active phases of growth and development we see in children. Working together with the skilled multi-disciplinary team at clinic has also been a highlight for her.
Events
The 6th Australian Update on HIV and Hepatitis In Children
In February 2010 the 6th Australian Update on HIV in Children and Families was co-ordinated by the Paediatric HIV Service at Sydney Children's Hospital. The event was highly successful, with about 100 delegates attending from locally and overseas. The event saw many international and national speakers presenting on Paediatric HIV Issues with keynote presentations from Dr Hermione Lyall MD, Paediatric Infectious Diseases at St Mary's Hospital, London UK. Other overseas speakers were Thanyawee Puthanakit and Peninnah Oberdorfer from Thailand. The range of topics presented included: HIV epidemiology ASIA/Pacific Region, Infant exposure to HIV in Australia, prevention of mother to child transmission, adolescent issues, transitional care, long term outcomes, child protection issues in HIV infection, Camp Goodtime experiences and new antiretrovirals.
The feedback from the conference was positive with evaluations supporting the need for this conference and also highlighting the need for these updates to be held more frequently. The next proposed date is early 2013.
Camp Goodtime
Each year since 1990, the service has facilitated Camp Goodtime, the national camp for children and families living with HIV.
The aims of Camp Goodtime are to:
- Facilitate communication between and within families living with HIV
- Reduce the isolation experienced by these families
- Provide a recreational and therapeutic environment where children and parents can share experiences with others in similar circumstances
- Provide a venue where information about the medical, social and other aspects of HIV can be shared and where new ways of coping with the virus can be learned
Children are supervised by volunteers and spend their time participating in a range of fun activities, whilst parents participate in a workshop program. The whole camp comes together for important events such as a remembrance ceremony. The quilt project is also in attendance.
Positive Kids Camps
In addition to Camp Goodtime, a camp is held each year for HIV positive primary school aged children and another for HIV positive teens. These camps aim at teaching a new skill, increasing confidence, increasing HIV knowledge, providing support and fostering peer networks.
Thanks to the wonderful support from donors and fundraisers the service has secured funding to run the camps for 2011. This year the service ran 2 camps, a 'Positive teens' camp with the focus on surfing and 'Camp Goodtime', the National family camp run for families living with HIV. In 2011, the aim is for the service to run 3 camps a positive teen and primary camp and also the family camp, 'Camp Goodtime' which will be October 2011.
Volunteers
Volunteers are recruited each year to work with the children at Camp Goodtime. Volunteers attend a training weekend prior to attending the Camp. To find out more about volunteering at Camp Goodtime, contact the social worker on:
- tel: (02) 9382 1851
- email: angela.miller@sesiahs.health.nsw.gov.au
Make a donation
Camp Goodtime does not receive any government funding, instead we rely solely on fundraising events, sponsorship and donations. To make a donation, please contact the Sydney Children's Hospital Foundation on (02) 9382 1188 to find out more.
Calendar
Resources
Positive Pregnancy Booklet
The Positive Pregnancy Booklet was originally developed and published in 2001 and has been updated in 2008. It has been designed to help couples living with HIV to make informed choices about pregnancy and having babies. It is also envisaged that it is a resource for other health care workers caring for these couples. It provides information from health professionals and a positive woman.
Links
- Sydney Children's Hospital
- Sydney Children's Hospital Foundation
- Australasian Society of HIV Medicine (ASHM)
- AIDS Council of NSW (ACON)
- Multicultural HIV/AIDS and Hepatitis C Service (MHAHS)
- Heterosexual HIV/AIDS Service (PosHets)
- Women, Children and HIV (NJ)
- Children's HIV Association
- British HIV Association
- Australasian society for HIV Medicine
- American HIV Assiciation
Contact Details
Telephone
- Tel: 61 2 9382 1508 (General Enquiries)
- Tel: 61 2 9382 1851 (Social Worker)
- Tel: 61 2 9382 1654 (Clinical Nurse Consultant)
Postal Address:
The Paediatric HIV Service
Level 3, Sydney Children's Hospital
High Street
Randwick NSW 2031