MANAGEMENT
Raising a child with Angelman syndrome is a journey that involves many aspects of support. It Is important to take a team approach to manage medical needs, developmental delays, and challenges like feeding, digestion, and sleep. Just as important, is supporting the child to feel included and engaged in their community. Below is a closer look at how we can best support both children and adults with Angelman syndrome, throughout their lives.
Key Considerations:
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Angelman syndrome is a lifelong condition, and though there are supportive therapies, there is currently no treatment or cure for the condition itself.
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Individuals with Angelman syndrome (all genotypes) will require ongoing support and 24/7 care throughout their lives.
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Individualized Approach: Management plans should be tailored to the specific needs of each person with AS.
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Focus on Strengths: Emphasize the individual's strengths and abilities, and help them achieve their full potential. Always presume competence.
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Introduce AAC (Augmentative and Alternative Communication) as early as possible. See Communication
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Positive Reinforcement: Use positive reinforcement to promote appropriate behaviours, rather than punishment.
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Challenging Behaviours: Understand that all behaviour is communication. Any changes in behaviours can be due to anxiety, pain, frustration, lack of sleep, or illness. Address these with appropriate strategies and eliminate any medical issues. Avoid additional medication until the source has been identified.
NB: This site is for informational purposes only. For medical advice, please always consult a professional.
Management Guidelines
The clinical management and support for people living with Angelman Syndrome changes as they move through the different stages of life.
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Standards of Care for Angelman Syndrome (2022) published by Angelman Syndrome Foundation, USA. This collaborative project documents common issues that accompany AS and the most common and established ways of providing care for the issues.
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Angelman Syndrome Clinical Management Guidelines (DYSCERNE— Angelman Syndrome Guideline Development Group, UK) - a general resource for Health Care
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Challenging behaviour (Angelman UK) - All behaviour is communication. It is very important not to ignore behaviours that challenge without additionally teaching an alternative communication strategy, otherwise the person has no way to communicate their needs.
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Behaviour Training Series - a video based series to explore possible root causes of challenging and aggressive behaviors and identify possible solutions. Funded by the Canadian Angelman Syndrome Society (CASS) and the Angelman Syndrome Foundation (ASF), and developed by the ASF.
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Angelman Syndrome: What It Is, Symptoms & Treatment
Information applicable to Aotearoa NZ, listed below:
Embracing a more holistic view of life:
Person-centred Planning and Enabling Good Lives Approach (EGL)