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Weight gain and CdLS
Question
Do individuals with CdLS gain weight in a regular basis?
Answer of our experts
It is very difficult for children with CdLS to gain weight quickly. Obviously, minimizing gastroesophageal reflux will help. They really gain weight at their own pace. Maximizing calories can be tried (but I do not think it always helps) through the help of a nutritionist. At the infancy stage it can be done through high-calorie formula. Probably, only with time will the weight add up. Some families will feed at night to get more calories in, but again I don't think overall it helps too much.
TK 7-13-10
Approved byClinical Advisory Board (CAB)
Answer is checked and valid for
Recommendation(s)
Growth in Childhood
R11
The growth of every child with CdLS should be monitored by using CdLS-specific growth charts.
Recommendation(s)
Reflux
R32
Consider always gastro-oesophageal reflux disease (GORD) in any individual with CdLS owing to its frequency and wide variability in presentation, which includes challenging behaviour.
R33
Modification of nutrition and proton pump inhibitors (PPI) are the first-line treatments of GORD. Anti-reflux medications need to be used to their maximum dosage. Surgical interventions for GORD should be limited to those individuals with CdLS in whom nutritional and medical treatments have been unsuccessful or airway safety is at risk.
R34
If GORD symptoms persist, endoscopy should be strongly considered whilst an individual with CdLS is still in paediatric care.
R35
Surveillance for Barrett’s Oesophagus needs to be discussed with and decided together with the family, balancing the potential gain in health and burden for the individual with CdLS.
