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Diet for feeding issues with Reflux


Question

It has been difficult to increase feedings for my child due to severe gastroesophageal reflux. As a result, her weight gain has been minimal for the past 3 months. Her pediatrician prescribed Medium-chain triglyceride (MCT) oil to supplement the breast milk and help her gain weight. Has MCT oil proven to be effective for infants with CdLS? I realize that extra calories do not necessarily help children with CdLS gain weight.

Answer of our experts

Yes, MCT oil should work and does promote weight gain. It is one of the many ways to increase calories in formula fed infants, but should work for breast fed babies as well. We sometimes also add extra formula powder to breast milk to make the calorie/ounce higher. Either way is fine.

CP/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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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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