Anxiety in Angelman Syndrome – 2017

Quick Overview

The 2017 ASF Family Conference highlighted the impact of anxiety on seizures, GI symptoms, and sleep in individuals with Angelman Syndrome. Anxiety can be difficult to identify and can manifest in various ways, including hitting, scratching, vomiting, and constipation. It can worsen seizures, GI symptoms, and sleep, negatively impacting overall well-being. Treatment is challenging due to a lack of willing psychiatrists, but ongoing studies aim to measure the severity and frequency of anxiety in individuals with the condition. Anxiety disorders are common, especially in individuals with developmental delays. There is limited research on anxiety in Angelman Syndrome, but studies suggest it may be more prevalent. The study will use caregiver interviews, clinician observations, and standardized assessment tools to measure anxiety, identify higher risk individuals, and inform treatment development. Treatment options may include behaviour modification and medication, but individualised approaches are necessary. Parents should consult healthcare professionals for appropriate treatment strategies. Changes in routine can be stressors that contribute to anxiety. Collaboration between clinics and researchers can increase understanding and treatment of anxiety in Angelman Syndrome. The use of CBD oil for anxiety in Angelman Syndrome is promising but requires further research.

Anxiety became a big topic at the 2017 ASF Family Conference due to its impact on seizures, GI symptoms, and sleep in individuals with Angelman Syndrome.

Identifying Anxiety

Anxiety can be difficult to identify, but certain behaviors like hitting and scratching can be signs of anxiety.

Manifestations of Anxiety

Anxiety can manifest in various ways, such as vomiting, GI issues during periods, and constipation.

Impact on Overall Well-being

Anxiety worsens seizures, GI symptoms, and sleep, leading to a negative impact on overall well-being.

Challenges in Treatment

Finding psychiatrists willing to treat anxiety in Angelman Syndrome has been challenging, but Dr. Keary has been a valuable addition to the team.

Ongoing Study

The study on anxiety in Angelman Syndrome is ongoing and aims to measure the severity and frequency of anxiety in individuals with the condition.

Importance of Measurement

Having a good way to measure anxiety is crucial for developing effective treatment strategies.

Prevalence of Anxiety Disorders

Anxiety disorders are common in the general population, with phobias, social anxiety, and generalized anxiety being the most prevalent types.

Higher Rates in Developmental Delays

Individuals with developmental delays, including those with genetic syndromes like Fragile X Syndrome and Williams Syndrome, have higher rates of anxiety disorders.

Severity of Developmental Delay

The severity of developmental delay may affect the risk of anxiety disorders, with more severe disabilities being associated with lower rates of anxiety.

Limited Research on Angelman Syndrome

There is limited research on anxiety in Angelman Syndrome, but studies suggest that anxiety may be more prevalent in individuals with the condition.

Measurement Methods

The study aims to use caregiver interviews, clinician observations, and standardized assessment tools to measure anxiety in individuals with Angelman Syndrome.

Identifying Higher Risk

The study will help identify who is at higher risk for anxiety and inform the development of treatment studies.

Encouraging Participation

The study is ongoing and families are encouraged to participate to contribute to the understanding and treatment of anxiety in Angelman Syndrome.

Addressing Insurance Coverage

The study will also help address insurance coverage issues and advocate for appropriate care for individuals with Angelman Syndrome.

Manifestations of Anxiety

Anxiety in Angelman Syndrome can manifest in different ways, including withdrawal and focusing on specific activities or objects.

Treatment Options

Treatment options for anxiety in Angelman Syndrome may include behavior modification and medication like Lexapro, but individualized approaches are necessary.

Consultation with Healthcare Professionals

Parents should consult with healthcare professionals to determine the most appropriate treatment strategies for their child with Angelman Syndrome.

Trying Traditional Treatments

Traditional anxiety treatments that have been helpful for individuals with developmental disabilities can be tried for Angelman Syndrome.

Medication Considerations

Antidepressant medications like Lexapro can sometimes cause irritability, especially in younger kids with developmental disabilities.

Medication Options

Medications with serotonergic effects like Buspar or buspirone are often used as a first-line treatment for anxiety in Angelman Syndrome.

Benzodiazepines for Seizures and Anxiety

Benzodiazepines like Ativan, Xanax, and Klonopin are commonly used to control seizures and can also be helpful for situational anxiety.

Beta Blocker Medication

Propranolol, a beta blocker medication, has been found to be helpful for performance anxiety in individuals with anxiety.

Alpha Agonist Medications

Alpha agonist medications like guanfacine or clonidine can also be used to treat anxiety in Angelman Syndrome.

Combination Medication

Clobazam, an atypical benzodiazepine, can have anti-anxiety properties and is often used in combination with other medications.

Stressors and Routine Changes

Changes in routine, such as divorce or moving to a new house, can be stressors that contribute to anxiety in individuals with Angelman Syndrome.

Collaboration for Understanding and Treatment

Collaboration between different clinics and researchers can help increase the understanding and treatment of anxiety in Angelman Syndrome.

Puberty and Cognitive Understanding

Puberty can be a difficult time for individuals with Angelman Syndrome, as they may experience physical changes without the cognitive understanding to comprehend them.

Consideration of Seizure Medications

Seizure medications can have an impact on anxiety, and it is important to consider their effects when studying anxiety in Angelman Syndrome.

Need for Comprehensive Measures

The severity of anxiety in Angelman Syndrome may not be accurately captured by current assessment tools, and there is a need for more comprehensive measures.

Collaboration between Specialists

Collaboration between psychiatrists and behavioral clinicians is important in the treatment of anxiety in Angelman Syndrome.

Gradual Introduction of Changes

Changes in routine can be a major stressor for individuals with Angelman Syndrome, and it may be helpful to gradually introduce small changes to prepare them for new situations.

Communication Systems

Communication systems, such as alternative augmentative communication (AAC), can help individuals with Angelman Syndrome express their anxiety and communicate their needs.

Promising but Requires Further Research

The use of CBD oil for anxiety in Angelman Syndrome is promising but requires further research and data.

Caregiver Changes and Triggers

Changes in caregivers can be a trigger for anxiety and behavioral changes in individuals with Angelman Syndrome.

Potential Use of Wearable Devices

Wearable devices, such as Fitbits, could potentially be used to measure physiological responses to anxiety in individuals with Angelman Syndrome.

Importance of Discussion and Incorporation

It is important for families to discuss anxiety with healthcare providers and researchers, and for researchers to consider incorporating anxiety measures in their studies.

Assessment Tool Limitations

The ADAMS assessment tool is commonly used to measure anxiety in Angelman Syndrome, but it may not capture all types of anxiety.

Behavioral Changes as Signs of Anxiety

Changes in behavior, such as aggression or self-injury, can be potential signs of anxiety in individuals with Angelman Syndrome.

Collaboration with Behavioral Therapists

Collaboration with behavioral therapists can help identify triggers and develop strategies to address anxiety in individuals with Angelman Syndrome.

Consideration of Underlying Medical Causes

It is important to consider underlying medical causes, such as reflux or dental problems, when assessing anxiety-related behaviors in individuals with Angelman Syndrome.

Talk details

  • Title: Anxiety in Angelman Syndrome – 2017
  • Author(s): Christopher Keary, Ron Thibert
  • Author(s)’ affiliation: Massachusetts General Hospital
  • Publication date: 2017-08-14
  • Collection: 2017 ASF Family Conference