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Progressive Condition/Respiratory Arrest

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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

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Find other pages that share the same topic as this page What medical care may a child with CdLS need?3 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.

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