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What medical care may a child with CdLS need?

        For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange Syndrome. 

There are a number of area's where medical care can be needed in CdLS, depending the severity and environmental circumstances.

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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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.

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Overview
Cornelia de Lange Syndrome
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Levensfases
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Health difficulties in CdLS...
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Deepen your knowledge of Cornelia de Lange Syndrome

We organize our answers about Cornelia de Lange Syndrome in topics. You can browse our topics below. Below each topic you might find more detailed topics with answers that might be of interest to you.

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Growth in Childhood
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Feeding and Dental Difficulties
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Infections and Vaccinations
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Pain and Behaviour
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Paediatric Medical Care
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Adult medical Follow-up
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Ability to move around and manipulate the environment
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Puberty

Vereniging Cornelia de Lange syndroom

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