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Feeding and Dysphagia

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Question

Is it common for children with CdLS to demonstrate dysphagia as they get older? Do feeding/swallowing issues occur in children with CdLS?

Answer of our experts

With regard to your concerns, usually the feeding difficulties in children with CdLS are a result of immature feeding/swallowing patterns, a result of adverse reactions associated with GERD, or an adverse reaction to oral feeding following a period of non-oral feeding. The longer there is no food by mouth often the greater the negative reaction. My experience has been that dysphagia does not increase as children with CdLS age, unless it is associated with a negative reaction to GERD or lack of oral feeding. More typically, once GERD is under control, children with CdLS who are oral feeders improve in oral feeding (or at least do not regress). Also, the nature of the feeding issues in children with CdLS is similar to other children who have had a history of GERD or non-oral feeding

CC/TK 7-13-10

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Recommendation(s)

Feeding and Dental Difficulties

R12
In every CdLS individual with prolonged and marked feeding difficulties, the multidisciplinary assessment (from healthcare workers across many disciplines) should consider (temporary) placement of a gastrostomy (surgical opening through the abdomen into the stomach) as a supplement to oral feeding.
R13
In individuals with CdLS who have recurrent respiratory infections, reflux and/or aspiration (breathing foreign objects into airways) should be ruled out.
R14
The palate should be closely examined at diagnosis. In case of symptoms of a (submucous) cleft palate, referral for specialist assessment is indicated.
R15
Dental assessment and cleaning should take place regularly; a more thorough dental examination or treatment under anaesthesia may be necessary.

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.

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