Cornelia de Lange Syndrome
- Introduction
- What is Cornelia de Lange syndrome (CdLS) and what causes it?
- What are the symptoms of CdLS?
- 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?
- My pediatrician wants to schedule my child for a Nissen fundoplication and gastrostomy tube placement for tube feedings. I still want to try to teach my child to eat by mouth. What should I do?
- My child has episodes of crying and I can’t get her to stop. What can I do?
- My daughter used to sleep well, but over the last few months has started awakening many times during the night. She doesn’t seem to be in pain, but won’t go back to sleep.
- How severe is my child compared to all of the other children?
- How can I provide my child with better communication?
- What is the likely cause of my child’s aggressive, self-injurious, or frustrated behaviors?
- How can we manage self-injurious or aggressive behaviors in CdLS?
- Resources
Introduction
What is Cornelia de Lange syndrome (CdLS) and what causes it?
What are the symptoms of CdLS?
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?
My pediatrician wants to schedule my child for a Nissen fundoplication and gastrostomy tube placement for tube feedings. I still want to try to teach my child to eat by mouth. What should I do?
My child has episodes of crying and I can’t get her to stop. What can I do?
My daughter used to sleep well, but over the last few months has started awakening many times during the night. She doesn’t seem to be in pain, but won’t go back to sleep.
How severe is my child compared to all of the other children?
How can I provide my child with better communication?
What is the likely cause of my child’s aggressive, self-injurious, or frustrated behaviors?
How can we manage self-injurious or aggressive behaviors in CdLS?
Resources
Information & Support
For Parents and Patients
General
Cornelia de Lange Syndrome (Genetics Home Reference)
Excellent, detailed review of condition for patients and families; U.S. National Library of Medicine.
Genetic Testing (CdLS Foundation)
A list of facilities that offer genetic testing for CdLS.
Services for Patients & Families in Montana (MT)
Service Categories | # of providers* in: | MT | NW | Other states (5) (show) | | ID | NM | NV | RI | UT |
---|---|---|---|---|---|---|---|---|---|---|
Adolescent Health Transition Programs | 5 | 3 | 3 | 3 | 3 | 3 | 11 | |||
Developmental - Behavioral Pediatrics | 9 | 1 | 3 | 3 | 4 | 11 | 9 | |||
Early Intervention for Children with Disabilities/Delays | 24 | 2 | 153 | 165 | 28 | 14 | 53 | |||
Gynecology: Pediatric/Adolescent; Special Needs | 3 | 2 | 1 | 21 | ||||||
Nutrition Assessment Services | 2 | 103 | 138 | 12 | 3 | 16 | ||||
Pediatric Dentistry | 50 | 57 | 64 | 28 | 27 | 60 | ||||
Pediatric Endocrinology | 15 | 1 | 2 | 28 | 5 | 14 | 7 | |||
Pediatric Gastroenterology | 23 | 1 | 3 | 6 | 6 | 20 | 4 | |||
Pediatric Genetics | 7 | 1 | 4 | 3 | 3 | 4 | 6 | |||
Pediatric Neurology | 15 | 2 | 33 | 6 | 11 | 5 | ||||
Pediatric Sleep Medicine | 4 | 3 | 1 | 3 | ||||||
Psychiatry/Medication Management | 17 | 20 | 17 | 40 | 78 | 62 | ||||
Special Education/Schools | 83 | 5 | 206 | 12 | 52 | 37 | ||||
Speech - Language Pathologists | 51 | 3 | 68 | 404 | 17 | 23 | 76 |
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.
Page Bibliography
Kline AD, Krantz ID, Sommer A, Kliewer M, Jackson LG, FitzPatrick DR, Levin AV, Selicorni A.
Cornelia de Lange syndrome: clinical review, diagnostic and scoring systems, and anticipatory guidance.
Am J Med Genet A.
2007;143A(12):1287-96.
PubMed abstract