Medical Care for All Ages in Angelman Syndrome
Medical care for individuals with Angelman syndrome can vary depending on age and specific needs. Common concerns include sleep issues, behavioral challenges, communication difficulties, and seizures. Treatment options may include medication, behavioral interventions, orthotics, and dietary changes. It is important to work closely with healthcare providers and specialists to address these concerns and develop a comprehensive care plan. Research is ongoing to improve understanding and treatment options for Angelman syndrome.
Welcome to the 2021 ASF Virtual Family Conference! In this session, we will be discussing medical care for individuals with Angelman syndrome of all ages. We have a panel of experts who will be answering your questions and providing valuable insights. But before we begin, here are a few reminders and announcements.
- Tomorrow night, we have another panel at 8 p.m. on behavior and anxiety in Angelman syndrome. Make sure to bring your questions for that session.
- We have a chance to raise $50,000 for the Angelman Syndrome Foundation. You can help by texting ASF to 90412 and giving your feedback. The deadline is August 19th.
- Check out the ASF store for great merchandise, like the sweatshirt the panelists are wearing tonight.
Introduction to the Panelists
Our panelists for tonight’s session are Dr. Elizabeth Berry-Kravis, Dr. Jessica Duis, and Dr. Mark Nespeca. They are all experts in the field of Angelman syndrome and have extensive experience in providing medical care for individuals of all ages.
Goal of the Session
The goal of tonight’s session is to answer your questions and provide information on medical care for individuals with Angelman syndrome. We will cover a range of topics, including sleep, behavior, seizures, and more. If you have any questions, please submit them in the Q&A box or the chat box.
Common Medical Concerns in Angelman Syndrome
Dr. Duis and Dr. Nespeca shared the top three medical concerns they often hear from patients and their families. These include sleep issues, behavioral challenges, and communication difficulties. Dr. Berry-Kravis also mentioned non-epileptic myoclonus as a common concern she sees in her clinic.
Tremors in Angelman Syndrome
The panel discussed tremors in Angelman syndrome, specifically non-epileptic myoclonus. They explained that this condition is characterized by tremulous jerky movements and is often seen in older children and adults. Treatment options include benzodiazepines and addressing underlying issues such as constipation or pain.
Toe Walking and Mobility
The panel addressed questions about toe walking and mobility issues in Angelman syndrome. They recommended interventions such as orthotics, casting, and physical therapy to help improve walking patterns. They also discussed the importance of early intervention and monitoring for scoliosis.
The panel discussed gastrointestinal issues in Angelman syndrome, including reflux and constipation. They emphasized the importance of addressing these issues early and involving a gastroenterologist if necessary. They also mentioned the potential benefits of low-carbohydrate diets and certain supplements in managing these concerns.
The panel addressed questions about sleep problems in Angelman syndrome. They explained that sleep issues can occur at any age but are more common in younger children. They recommended establishing a consistent sleep routine and addressing underlying issues such as reflux or constipation. They also discussed the potential benefits of melatonin for improving sleep.
Cognitive Skills in Angelman Syndrome
The panel discussed cognitive skills in Angelman syndrome. While there may be individual variations, they explained that cognitive abilities generally remain stable over time. They emphasized the importance of early intervention and ongoing support to help individuals with Angelman syndrome continue to learn and develop new skills.
Seizures in Angelman Syndrome
The panel addressed questions about seizures in Angelman syndrome. They explained that seizures can occur at any age but are more common in early childhood. The duration and severity of seizures can vary among individuals. They also discussed the potential benefits of early genetic intervention in managing seizures.
The panel discussed the COVID-19 vaccine and its potential side effects in individuals with Angelman syndrome. They emphasized the importance of getting vaccinated, as the benefits outweigh the risks. They have not seen any major side effects in individuals who have received the vaccine.
The panelists expressed their excitement about the future of Angelman syndrome research and the potential for early genetic interventions. They encouraged families to reach out to Angelman syndrome clinics for specialized care and support. They also highlighted the importance of ongoing research and collaboration within the Angelman syndrome community.
Thank you for joining us for this session on medical care for all ages in Angelman syndrome. We hope you found the information helpful and informative. If you have any further questions, please reach out to the Angelman Syndrome Foundation or your local Angelman syndrome clinic.
- Title: Medical Care for All Ages in Angelman syndrome
- Author(s): Elizabeth Berry-Kravis, Jessica Duis, Mark Nespeca
- Author(s)’ affiliation: Rush University Medical Center; Children’s Hospital of Ohio; Rady Children’s Hospital
- Publication date: 2021-08-10
- Collection: 2021 ASF Virtual Family Conference