Neurobehavioral Approaches to Angelman Syndrome Part 2

Quick Overview

The summary discusses neurobehavioral approaches to Angelman Syndrome, focusing on physical and behavioral concerns in children and adults with the syndrome. The authors emphasize the importance of understanding the factors associated with these concerns and how they can be addressed to improve overall health and reduce challenging behaviors. They also highlight the need for a multidisciplinary approach, including medical professionals, therapists, and caregivers, to provide comprehensive care and support. The summary concludes by mentioning the parents’ information needs and the potential benefits of clinical trials in the future.

Welcome to the second part of our discussion on neurobehavioral approaches to maximize health and behavioral functioning in individuals with Angelman Syndrome. In this talk, we will be focusing on the range of factors associated with physical and behavioral concerns in children and adults with Angelman Syndrome, and how knowledge of these factors can be used to improve their overall well-being.

Introduction

In this talk, we will be discussing the findings from our Ottawa Clinic, where we provide a neurobehavioral approach to individuals with Angelman Syndrome. Our aim is to improve their physical and emotional health, reduce challenging behaviors, and help them reach their full potential.

Our Approach

At the Ottawa Clinic, we combine the expertise of a neurologist and a psychologist to provide a comprehensive neurobehavioral approach. We also collaborate with other medical professionals, such as clinical geneticists and developmental pediatricians, to ensure that individuals with Angelman Syndrome receive the best possible care.

Health Watch Table

One of the valuable resources we use in our clinic is the Health Watch Table for Angelman Syndrome. This table, developed by therapists at Surrey Place Centre in Toronto, provides guidance on anticipating, monitoring, and managing physical and behavioral health concerns in individuals with Angelman Syndrome. It covers a range of issues, including toileting, safety, pain and discomfort, and mental health.

Toileting Skills

Daytime bladder incontinence and nocturnal enuresis are common in individuals with Angelman Syndrome, particularly in young children and those with seizures. To address these issues, we recommend toilet skills training programs that focus on urinary continence and reducing accidents. It is important for children to feel relaxed on the toilet, so parents can make adjustments to the environment, such as using a lower toilet seat and providing support rails and footstools. Rewarding children for successful toileting is also important, but it is crucial to wait until they have fully emptied their bladders before giving rewards.

Pain and Discomfort

Pain and discomfort can present as distress, sleep disturbance, or behavioral changes in individuals with Angelman Syndrome. It is important to investigate and treat possible physical causes of pain and discomfort, such as reflux or headaches. Environmental factors, such as temperature and noise levels, should also be considered. Parents should be aware of signs of pain and discomfort in their child, such as changes in facial expression, vocalizations, or eating and sleeping habits. Safety proofing and supervision are critical to prevent accidents and injuries in individuals who may not have a concept of danger.

Sleep Problems

Sleep problems are common in individuals with Angelman Syndrome and can have a significant impact on family functioning. Implementing consistent bedtime routines and modifying the sleep environment can help improve sleep quality. Melatonin may also be considered, but if sleep problems persist, a referral to a sleep specialist or clinic may be necessary. It is important to address sleep issues as they can affect the individual’s learning, behavior, and overall well-being.

Mental Health and Behavioral Issues

Communication problems are a significant challenge for individuals with Angelman Syndrome, as expressive speech is often limited. Early and ongoing intervention by speech-language therapists is essential, with a focus on nonverbal forms of communication, such as augmentative and alternative communication aids. Challenging behaviors, such as aggression and self-injury, can be a result of frustration and difficulty in expressing needs and wants. Skill-building approaches, such as Applied Behavior Analysis, can help individuals develop adaptive and communication skills, reducing challenging behaviors and improving overall functioning.

Conclusion

In conclusion, a neurobehavioral approach can greatly benefit individuals with Angelman Syndrome by addressing their physical and behavioral concerns, improving their overall health and well-being. By understanding the range of factors associated with Angelman Syndrome and utilizing appropriate interventions, we can help individuals with Angelman Syndrome reach their full potential and maximize their quality of life.