Ask the expert

tada

Progressive Condition/Respiratory Arrest


Question

Is CdLS a progressive condition? Is respiratory arrest common?

Answer of our experts

CdLS is not a progressive syndrome, in that there is not a regression of learned abilities. Developmental progress continues to be made throughout life. Respiratory arrest is uncommon and is typically seen only with a primary pulmonary component, such as aspiration pneumonia, secondary to reflux

TK 7-13-10

Answer is checked and valid for
us
Find other pages that share the same topic as this page What medical care may a child with CdLS need?9 Cornelia de Lange Syndrome (CdLS)?

Recommendation(s)

What medical care may a child with CdLS need?

R10
Every infant and young child with CdLS should be assessed for cardiac (heart) and renal (kidney) malformations subsequent to diagnosis.
R19
Regular follow-up of every child with CdLS is needed, preferably by a paediatrician or clinical geneticist experienced in treating individuals with CdLS; schedules depend on local practices and possibilities.

Legal Disclaimer

Please take note that the Ask the Expert service is comprised of volunteer professionals in various areas of focus. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.

Do you have a question you would like to ask?

Ask a Question

Do You urgently need help? Contact the CdLS Foundation USA, Our Staff!