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Weight Gain


Regarding 10-month-old male with CdLS. He had a Nissen performed at nine months of age but pediatric surgeon is concerned with lack of weight gain. Recommending placement of g-tube for night feedings. Is the placement of a g-tube for additional feedings the best way to increase weight gain? Is growth in individuals with CdLS sporadic (in addition to small stature)? When is assistance with weight gain needed? What are the determining factors?

Answer of our experts

The weight for height relationship is more important that the weight. It is often hard to get an accurate height due to contractures and lack of cooperation. There are growth charts that look at the weight for a given height. We don't want to make the child fat and too heavy for the parents to lift and care for. We also don't want the child too thin. Malnutrition effects the immune function, making the child more likely to get sick, or more severely sick with a given illness. It also negatively impacts tissue-healing, etc. Growth in all children is sporadic, but should be relatively steady over time.

When recommending supplemental feeding, it is important to see what fits in the child's life best. If they are active in the day and eat some by mouth, I often use night drip feeds because children aren't tied to a pump during the day and feeding time can be social and fun rather than fighting to get the calories in. I start the drip when the child goes to bed and run it as fast as I can so the parents can turn it off and forget about it and the child can wake up hungry. If the child eats almost nothing by mouth and doesn't move around during the day, a day drip or bolus feed may work better.

G-tubes are probably the easiest feeding tube to use.

CP/ 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.


Growth in Childhood

The growth of every child with CdLS should be monitored by using CdLS-specific growth charts.

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