Extremely distended belly

Question

Dear expert team,
anew I count on your knowledge and possible hints how we can improve the health condition of our daughter (21 months old, CF with F508del and R553X, severe pancreatic insufficiency).
The problem is, that all attempts to cope with the extremely distended belly of our daughter were unsuccessful until now. Under supervision of the dietician specialist of our CF-center, in addition to the usage of Creon® the following has been tried until now: Nortase® (digestion enzymes derived from plants), Resource Optifibre® (dietary fibre concentration), reduction of fructose, negative test of celiac disease, proton pump inhibitor. All without success...the dosage of the Creon® is at least at 2800 units (since our daughter eats with us at the table we have to estimate an give rather a spoon more).
Our little one does however not complain about stomach pain, however looks permantly like being in high pregnancy. Only in the mornings at getting up the abdomen is mostly flat, as soon as she starts eating, the belly distends. Due to this, she is also impaired in her mobility.
What can be the reason why until now nothing was successful? What can still be tried respectively how should we proceed?
Many thanks for your help!

Answer

Hello,
the most important thing is where you daughter stands concerning weight and height, if she shows a normal development according to the percentile. Furthermore, the fact that she has obviously no stomach pain is reassuring.
Some children at this age have a distended belly without a relation to a not totally optimal enzyme replacement therapy.
I assume that you give pancreatic enzmyes according to recommendations before each meal without mixing the pellets with the food or without grinding them up. In any case the mentioned dosage seems a bit low to me, however there is no information on the reference quantity. Investigations of the stool can well give information on the right dosage. An adaption of the enzyme dosage according to the intake of the amount of fat should be done continously.
According to personal experience the usage of probiotic lactic acid bacteria (LGG) is successful in the case of some babies with the symptoms you report.
Yours sincerely,
H. Ellemunter

19.04.2013