Rett Syndrome
- Introduction
- What is Rett syndrome and what causes it?
- What are the symptoms of Rett syndrome?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How will my child and our family be impacted?
- Sometimes my daughter breathes in a very different way. What happens when she hyperventilates?
- What should we do about her irregular breathing?
- Should my daughter with Rett syndrome have an electrocardiogram (ECG)?
- Resources
Introduction
What is Rett syndrome and what causes it?
What are the symptoms of Rett syndrome?
How is it diagnosed?
What is the prognosis?
What is the risk for other family members or future babies?
What treatments/therapies/medications are recommended or available?
How will my child and our family be impacted?
Sometimes my daughter breathes in a very different way. What happens when she hyperventilates?
What should we do about her irregular breathing?
Should my daughter with Rett syndrome have an electrocardiogram (ECG)?
Resources
Information & Support
For Parents and Patients
Support
International Rett Syndrome Association (IRSA)
A non-profit organization that invests in research, provides support to families, and raises awareness about Rett syndrome.
General
NINDS Rett Syndrome Information Page
An overview of Rett syndrome with links to other organizations, from the National Institute of Neurological Disorders and
Stroke.
Síndrome de Rett (NINDS)
Spanish language overview of Rett syndrome; National Institute of Neurological Disorders and Stroke.
Frequently Asked Questions (International Rett Syndrome Foundation)
Many thoughtful and well-researched answers to questions about Rett syndrome.
Rett Syndrome (Genetics Home Reference)
Excellent, detailed review of condition for patients and families; sponsored by the U.S. National Library of Medicine.
Rett syndrome (MedlinePlus)
Brief description of RS and numerous links to other reliable sources of information for parents and family members; from the
National Library of Medicine.
Rett syndrome (MedlinePlus Encyclopedia)
Overview of Rett syndrome, with links to more information; from the National Library of Medicine.
Patient Education
Kids with Tubes
Information about tube-feeding from families, for families. Although the site is not updated often, the information remains
valuable.
Services for Patients & Families in New Mexico (NM)
Service Categories | # of providers* in: | NM | NW | Other states (5) (show) | | ID | MT | NV | RI | UT |
---|---|---|---|---|---|---|---|---|---|---|
Adaptive Sports and Recreation | 28 | 8 | 12 | 13 | 19 | 20 | 59 | |||
After School Programs | 5 | 4 | 18 | 9 | 6 | 48 | ||||
Arts/Music Therapies | 42 | 3 | 3 | 9 | 14 | 6 | 19 | |||
Assistive Technology Equipment | 527 | 37 | 66 | 47 | 42 | 42 | 61 | |||
Behavioral Therapies | 159 | 1 | 26 | 11 | 37 | 17 | 28 | |||
Bone Densitometry/DEXA | 4 | |||||||||
Childcare, Special Needs | 1 | 1 | 2 | 6 | 4 | 3 | 9 | |||
Developmental - Behavioral Pediatrics | 3 | 1 | 3 | 9 | 4 | 11 | 9 | |||
Estate & Future Planning | 41 | 2 | 3 | 2 | 3 | 3 | 5 | |||
General Pediatric Surgery | 12 | 1 | 2 | 5 | 4 | 2 | ||||
Genetic Testing and Counseling | 59 | 5 | 6 | 18 | 2 | 11 | ||||
Gynecology: Pediatric/Adolescent; Special Needs | 2 | 3 | 1 | 21 | ||||||
National Child Abuse Hotlines | 4 | 4 | 4 | 6 | 4 | 4 | 4 | |||
National Support Services, Disab/Diag | 103 | 102 | 103 | 102 | 102 | 102 | 102 | |||
Nutrition Assessment Services | 134 | 103 | 2 | 12 | 3 | 16 | ||||
Pediatric Cardiology | 32 | 1 | 4 | 17 | 5 | 17 | 7 | |||
Pediatric Endocrinology | 26 | 1 | 2 | 15 | 5 | 14 | 7 | |||
Pediatric Gastroenterology | 6 | 1 | 3 | 23 | 6 | 19 | 4 | |||
Pediatric Genetics | 3 | 1 | 4 | 7 | 3 | 4 | 6 | |||
Pediatric Neurology | 31 | 2 | 15 | 6 | 11 | 5 | ||||
Pediatric Orthopedics | 12 | 2 | 4 | 13 | 6 | 12 | 19 | |||
Pediatric Physical Medicine & Rehabilitation | 3 | 1 | 1 | 6 | 1 | 3 | 8 | |||
Pediatric Pulmonology | 5 | 1 | 6 | 5 | 10 | 4 | ||||
Pediatric Sleep Medicine | 3 | 4 | 1 | 3 | ||||||
Psychiatry/Medication Management | 18 | 20 | 17 | 40 | 78 | 62 | ||||
Respite Care | 132 | 3 | 16 | 8 | 18 | 8 | 29 | |||
Services for People with Disabilities | 129 | 2 | 9 | 40 | 17 | 6 | 18 | |||
Special Education/Schools | 201 | 5 | 83 | 12 | 52 | 47 | ||||
Swallow Studies | 1 | 1 |
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
Rett Syndrome (clinicaltrials.gov)
Lists clinical studies that have an active, recruiting, and completed status; National Institutes of Health.
Page Bibliography
Kerr AM, Julu PO.
Recent insights into hyperventilation from the study of Rett syndrome.
Arch Dis Child.
1999;80(4):384-7.
PubMed abstract / Full Text
Wong VC, Li SY.
Rett syndrome: prevalence among Chinese and a comparison of MECP2 mutations of classic Rett syndrome with other neurodevelopmental
disorders.
J Child Neurol.
2007;22(12):1397-400.
PubMed abstract