Angelman Syndrome (FAQ)
- What is Angelman syndrome?
- How do you get Angelman syndrome?
- What are the symptoms?
- How is it diagnosed?
- What is the expected outcome?
- Will anyone else in the family get Angelman syndrome?
- What is the treatment?
- How will my family's life be changed?
- My child seems to be having seizures often but her neurologist does not yet want to start medication. Why?
- We don't have insurance and our child needs a second, very expensive medication for his seizures. What can we do?
- My child started taking a generic version of her seizure medication and now she is having more seizures. Why is this?
- Resources
What is Angelman syndrome?
How do you get Angelman syndrome?
What are the symptoms?
- Developmental delays
- Intellectual disability
- Frequent smiling and laughing
- Decreased communication skills
- Hyperactivity
- A happy personality
- Seizures
- Severe constipation
- Anxiety
- Severe gross motor delay
- Sleep problems or a decreased need for sleep
- Scoliosis (curved spine)
- Ataxia (poor muscle control)
- Fascination or obsession with water
- Vision problems
How is it diagnosed?
What is the expected outcome?
Will anyone else in the family get Angelman syndrome?
What is the treatment?
How will my family's life be changed?
My child seems to be having seizures often but her neurologist does not yet want to start medication. Why?
We don't have insurance and our child needs a second, very expensive medication for his seizures. What can we do?
My child started taking a generic version of her seizure medication and now she is having more seizures. Why is this?
Resources
Information & Support
Angelman Syndrome
Assessment and management information for the primary care clinician caring for the child with Angelman syndrome.
Care Notebook
Medical information in one place with fillable templates to help both families and providers. Choose only the pages needed to keep track of the current health care summary, care team, care plan, health coverage, expenses, scheduling, and legal documents. Available in English and Spanish.
For Parents and Patients
Support
Support Resources (Angelman Syndrome Foundation)
Educational and community resources by topic for those caring for children with Angelman syndrome.
Epilepsy Foundation
A national organization that provides information about epilepsy; programs to improve epilepsy treatment; materials to assist
in helping people with epilepsy find jobs; activities in schools to educate the public; activities to educate policymakers;
funds for research; links to find local and state resources; and news about conferences and other items of interest.
Foundation for Angelman Syndrome Therapeutics (FAST)
Established in 2008, FAST aims to assist individuals living with Angelman syndrome to realize their full potential and quality
of life and to bring practical treatment into current medical practice as quickly as possible. The website offers educational
material, ways to connect with the founder (a parent of a child with Angelman syndrome) and with other parents, and other
resources.
General
Angelman Syndrome Foundation
Information, resources, and discussion forums for individuals with AS and their families. This organization also raises money
for research on AS.
Angelman Syndrome (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources;
from the National Library of Medicine.
Angelman Syndrome (Orphanet)
Information and links about AS.
Angelman Syndrome (Mayo Clinic)
Information about symptoms, causes, risk factors, complications, tests, treatment, and coping strategies.
American Epilepsy Society
Information and resources to understand epilepsy, especially for those who are not familiar with the condition.
Prescription Assistance Programs (Epilepsy Foundation)
Information and links to various prescription assistance programs, which may help reduce the cost of medications significantly.
Services for Patients & Families in Idaho (ID)
Service Categories | # of providers* in: | ID | NW | Other states (5) (show) | | NM | NV | OH | RI | UT |
---|---|---|---|---|---|---|---|---|---|---|
CSHCN Clinics | 2 | 4 | 4 | 4 | 13 | 5 | ||||
Developmental - Behavioral Pediatrics | 1 | 2 | 2 | 2 | 12 | 9 | ||||
Early Intervention for Children with Disabilities/Delays | 3 | 35 | 32 | 3 | 14 | 55 | ||||
Electroencephalography (EEG) | 1 | 1 | 2 | |||||||
General Counseling Services | 1 | 3 | 209 | 1 | 30 | 362 | ||||
Gynecology: Pediatric/Adolescent; Special Needs | 1 | 3 | 13 | |||||||
Medical Genetics | 1 | 2 | 5 | 1 | 4 | 8 | ||||
Occupational Therapy | 1 | 17 | 27 | 2 | 19 | 38 | ||||
Pediatric Dentistry | 2 | 6 | 31 | 3 | 41 | 50 | ||||
Pediatric Gastroenterology | 1 | 3 | 6 | 1 | 19 | 4 | ||||
Pediatric Neurology | 5 | 5 | 17 | 6 | ||||||
Pediatric Ophthalmology | 1 | 6 | 6 | 1 | 8 | 4 | ||||
Pediatric Orthopedics | 4 | 6 | 8 | 4 | 16 | 21 | ||||
Pediatric Physical Medicine & Rehabilitation | 3 | 3 | 3 | 3 | 6 | 14 | ||||
Physical Therapy | 12 | 11 | 1 | 5 | 48 | |||||
Preschools | 4 | 30 | 11 | 79 | ||||||
Psychiatry/Medication Management | 2 | 49 | 79 | 56 | ||||||
School Districts | 90 | 22 | 1 | 63 | 47 | |||||
Sleep Disorders | 2 | 4 | ||||||||
Sleep Studies/Polysomnography | 2 | 1 | 6 | |||||||
Speech - Language Pathologists | 4 | 22 | 13 | 4 | 31 | 69 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
Studies
Angelman Syndrome Studies (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.