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G-tube and Formula

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Question

My child has had a G-tube placed and Nissen at three weeks old. She has been on Isomil since birth. She has recently lost 2 lbs. We have tried Pediasure but my child is not able to tolerate it. My child is able to vomit past the Nissen. The doctor is currently adding sugar to the formula. Is there a better way for my child to obtain nutrition?

Answer of our experts

Some children with a Nissen fundoplication/G-tube do much better with a pre-digested formula (what we call partially hydrolyzed) which has improved gastric emptying time.Ê There are several different pre-digested formulas available for tube feeding (such as Peptamen Jr.), and you should check with your GI doc about what they recommend.Ê These formulas typically are 30 kcal/ounce

Regarding the fact that your child is able to vomit now suggests that the Nissen may have "slipped".Ê We can evaluate whether a Nissen is intact by two different methods.Ê First, to assess the anatomy, we do a "tube study" where some contrast (like an UGI) is put into the G-tube and radiographs are taken to see if any contrast goes ÒbackwardsÓ and enters the esophagus.Ê Second, to assess that the Nissen is normally functioning, we can use either a 24-hour pH probe and/or a nuclear medicine "milk scan".ÊÊ The "milk scan" can be combined with a gastric emptying scan to see whether emptying is very slow.Ê This work-up may not be needed if symptoms and weight improve with a pre-digested formula, but if she remains symptomatic, your GI Doctor may recommend the above tests

LG/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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