This is the recording of the DEE-P webinar which was recorded on May 18, 2022
In this incredible webinar, you will learn about growth attenuation from the caregiver, clinical, ethical, and practical sides.
Growth attenuation therapy (GAT) is an intervention to bring on early puberty in order to reduce the overall growth of a child. Since 2006, this treatment has been utilized to help caregivers continue to care for wheelchair-bound or bed-bound children with severe physical and cognitive delays in their own homes. Those who chose this treatment often report an improved quality of life that allows them to carry, cuddle, change, bathe, and travel with their highly dependent children.
During this webinar, you will:
- Learn what GAT is and how it works.
- Hear from families who have been or are going through GAT with their children.
- Ethical and practical considerations of GAT.
Our panelists for this webinar are:
SandyLee Quinn is a California native living in Iowa. She is a fierce advocate of helping severely and profoundly disabled children and adults to be cared for in a home environment and out of nursing homes and institutions. She is a single mom to a 15 year old son. She has two older children who are 30 and 25 outside of the home. She is also Nana, legal guardian and sole provider for her 6 year old grandson, Ethan who is severely and profoundly disabled. He loves wire bead toys, Daniel tiger and school. Her oldest daughter, Emily, has SCN8A DEE as well as her grandson. Emily is high functioning and lives in a group home. SandyLee was a computer analyst for 25+ years and has her own complex health issues. This includes two 12 inch metal rods since the age of 13 and then Complex Spinal Revision Surgery 5 years ago. All of this played a part in her decision to seek out growth attenuation therapy for her grandson, Ethan.
Dustin and Grace Eads are parents to Paxton, 13, and Irene, 7, who have a Pontocerebellar Hypoplasia Type 1-B. This genetic mutation impacts the Vermis part of the Cerebellar impacting all aspects of motor function. Paxton and Irene have a trach and a g-tube and are on a ventilator. Dustin is a high school Intervention Specialist and Grace is an elementary teacher in Ohio. Paxton enjoys all things sports, especially rooting for the Cincinnati Reds, Atlanta Hawks, and Philadelphia Eagles. Irene likes unicorns and princesses. They enjoy watching movies together and love it when they are able to go swimming. As a family, they enjoy traveling and want to provide experiences for Paxton and Irene that let them live as normal a life as possible.
Phil Zeitler, MD is a Professor of Pediatrics and Clinical Sciences and Head of the Section of Endocrinology at the University of Colorado Anschutz Medical Campus. Dr Zeitler is Chair of the Department of Endocrinology and Medical Director of the Children’s Hospital Colorado Clinical Translational Research Center, the pediatric research unit of the Colorado Clinical Translational Science Institute. Dr Zeitler is Editor-in-Chief of Pediatric Diabetes and a past President of the Pediatric Endocrine Society. Dr. Zeitler is the leading clinician working in growth attenuation
Benjamin S. Wilfond, MD, is an investigator at the Treuman Katz Center for Pediatric Bioethics and a pulmonologist at Seattle Children’s Hospital. He is a professor, Division of Bioethics & Palliative Care and Pulmonary & Sleep Medicine, Department of Pediatrics, University of Washington School of Medicine, He founded and is former division chief, Bioethics and Palliative Care and former director, Treuman Katz Center for Pediatric Bioethics, the first such programs in the US.
Dr Wilfond is the research ethics case co-editor of the American Journal of Bioethics and on the editorial boards of the Hastings Center Report, Ethics and Human Research, and Journal of Genetic Counseling. He is a past president of the Association of Bioethics Program Directors and he convened a twenty-person working group to discuss the ethical and policy considerations of growth attenuation therapy that was published in 2012 – Navigating Growth Attenuation in Children with Profound Disabilities Children’s Interests, Family Decision-Making, and Community Concerns.
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