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Gastroenterology (Feeding)


I'm wondering if it's common for children with CdLS who had no trouble with bottle-feeding and no known gastroesophageal reflux (GERD) to later have trouble with solids. Do feeding difficulties as infants and feeding difficulties as older children tend to go hand in hand? My daughter seems to have virtually no interest in eating either baby foods or table foods. She has always done great with bottle-feeding and still does, and we don't know of any GERD with her, although we've only had an upper GI series (no Endoscopy or PH Probe). I'm wondering if this could just be due to general developmental delaymaybe she's just not ready (the OT says she is at a 5-month level), although her fine motor skills are more like a 10-month-old.

Answer of our experts

Feeding difficulties as infants and feeding difficulties as older babies tend to go hand in hand, but feeding difficulties can be identified in children, as they get older, who did not have them previously

There could be a number of different reasons why a child has difficulty with oral management (feeding) of solids. Especially if a child has a smaller mouth, or smaller relationship between the lower and upper jaws where the tongue still pretty much fills the mouth, then oral feeding of solids may present challenges because of limited space. What is more common, though, is that for some children, as the mouth grows and there is now space, not to have the same internal support for management of food that they did with a smaller mouth, in which the tongue filled the oral cavity. Now that there is more space, the food moves around more and is more difficult to control. For some children, this can be scary. This is a more common scenario than the one previously mentioned

Also, if a child does have developmental delays, then it may take the child longer to have an interest in and be able to orally manage solid foods. Sometimes texture is an issue, so thickening the milk or formula with baby cereal would be one way to see how your daughter manages textures

Gradually keep thickening the milk with baby cereal until it is a soupy consistency and see how this is tolerated. If it is tolerated well, continue to gradually thicken the cereal until an "oatmeal" consistency is tolerated. To see if taste is an issue, flavors could be added to the milk or formula. Also, be aware of any sensitivity. Since strawberry milk flavoring is available, that could be a start to rule out the last issue. Other flavors of baby food also could be used. For some children the issue is related to the spoon. Cutting a slightly wider hole in a nipple to allow thicker liquid to be expressed is an activity that could be used to assess whether she just prefers a bottle. All of the above should be initiated with support from the pediatrician. Ideally, your daughter should be seen by a speech pathologist that is familiar with feeding issues in children

CC/TK 7-13-10

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Feeding and Dental Difficulties

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.
In individuals with CdLS who have recurrent respiratory infections, reflux and/or aspiration (breathing foreign objects into airways) should be ruled out.
The palate should be closely examined at diagnosis. In case of symptoms of a (submucous) cleft palate, referral for specialist assessment is indicated.
Dental assessment and cleaning should take place regularly; a more thorough dental examination or treatment under anaesthesia may be necessary.



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.
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.
If GORD symptoms persist, endoscopy should be strongly considered whilst an individual with CdLS is still in paediatric care.
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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