Neurobehavioral Approaches in Angelman Syndrome Part 1
This talk discusses neurobehavioral approaches in Angelman Syndrome, focusing on the Health Watch Table for Individuals with Angelman Syndrome and the Online Behavior Modules. The aim is to provide guidance for individuals with Angelman Syndrome to maximize their physical, behavioral, and mental health. The talk also includes case examples from the Angelman Syndrome Clinic in Ottawa. The speakers, Jane Summers and Dr. Eric Sell, emphasize the importance of a neurobehavioral approach in improving the physical and emotional health of individuals with Angelman Syndrome and reducing challenging behavior. They discuss various aspects of health, including genetics, neurology, musculoskeletal issues, gastrointestinal problems, dental care, and endocrine and sexuality concerns. The talk concludes with a discussion on the importance of addressing abuse policies and staff training in agencies that provide care for individuals with Angelman Syndrome.
In this talk, we will be discussing neurobehavioral approaches in Angelman Syndrome. Our talk is organized around the Health Watch Table for Individuals with Angelman Syndrome and the Online Behavior Modules. We aim to provide information on how these resources can be used to maximize the physical, behavioral, and mental health of individuals with Angelman Syndrome. We will also share examples from our Angelman Syndrome Clinic in Ottawa.
About the Authors
The authors of this talk are Jane Summers, a psychologist from the Center for Addiction and Mental Health in Toronto, and Dr. Eric Sell, a neurologist from Children’s Hospital of Eastern Ontario in Ottawa. They have a mutual interest in Angelman Syndrome and have established a clinic to improve the physical and emotional health of individuals with the condition.
The Angelman Syndrome Health Watch Table
The Angelman Syndrome Health Watch Table is a valuable resource for individuals with Angelman Syndrome and their caregivers. It provides anticipatory guidance for health and mental health concerns and helps monitor mental health and health needs across all ages and stages. The table covers various areas including genetics, neurology, musculoskeletal health, gastrointestinal health, dental health, endocrine and sexuality, and mental health and behavior. The authors have added a few more categories of their own that will be discussed in the talk.
Online Behavior Modules
The authors also recommend using the Online Behavior Modules, which were developed to provide guidance to families and caregivers on managing challenging behavior in individuals with Angelman Syndrome. These modules can be accessed through a website and are funded by the Angelman Syndrome Foundation and the Canadian Angelman Syndrome Society.
The Ottawa Clinic
The authors have established an Angelman Syndrome Clinic in Ottawa to provide services closer to home for Canadians. The clinic aims to improve the physical and emotional health of individuals with Angelman Syndrome, reduce challenging behavior, and enable individuals to reach their full potential and maximize their quality of life. The clinic gathers information through semi-clinical structured interviews and chart extraction.
Dr. Sell, the neurologist at the clinic, focuses on neurological aspects of Angelman Syndrome. He emphasizes the importance of seizure control and discusses different seizure types and medications. He also highlights the musculoskeletal issues that individuals with Angelman Syndrome may face, such as hypotonia and scoliosis. Dr. Sell recommends involving other specialists, such as orthopedic and gastrointestinal specialists, to address these issues.
Gastrointestinal and Toileting Issues
Gastrointestinal symptoms, including reflux and constipation, are common in individuals with Angelman Syndrome. The authors recommend increasing fluid and fiber intake, as well as engaging in regular physical activity, to help manage these symptoms. Toileting issues, such as daytime bladder incontinence, are also common and can be addressed through training and establishing a routine.
Eye, Ear, Nose, and Throat Health
Eye problems, such as excessive rubbing and strabismus, are frequently observed in individuals with Angelman Syndrome. The authors recommend regular eye examinations and interventions, such as glasses or surgery, if necessary. Ear, nose, and throat issues, including choking and ear infections, should also be monitored and addressed by specialists if needed.
Dental and Endocrine Health
Maintaining good dental hygiene is important for individuals with Angelman Syndrome. The authors recommend establishing a routine and using chewelry to redirect excessive chewing habits. They also mention that puberty may come later for some females with Angelman Syndrome and highlight the importance of discussing sexual health and abuse prevention.
In this talk, we have discussed neurobehavioral approaches in Angelman Syndrome. We have highlighted the importance of the Angelman Syndrome Health Watch Table and the Online Behavior Modules in providing guidance and support for individuals with Angelman Syndrome. We have also shared examples from our Angelman Syndrome Clinic in Ottawa. If you have any questions or suggestions for the Health Watch Table, we encourage you to share them.
- Title: Neurobehavioral Approaches in Angelman Syndrome Part 1
- Author(s): Jane Summers, Erick Sell
- Author(s)’ affiliation: Children’s Hospital of Eastern Ontario
- Publication date: 2017-08-07
- Collection: 2017 ASF Family Conference