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Inadequate weight gain in Cystic Fibrosis

Cystic Fibrosis has been diagnosed to our daughter (9 months old at present) at the age of 3 months. Since then we tried a lot of therapeutical options as her weight gain is inadequate, in spite of the fact that she is taking pancreatic enzymes, 30mg taurin and for the last 7 weeks omeprazol a quarter of a tablet two times a day. She is completely breast feeded and refuses other food than mothermilk. Otherwise she is in good condition, the development is according to age, but with 64cm of heighth and 5200g of weight (50cm, 3070g at birth) she is definitively very small and light. I think that her medication is not optimal yet. After starting omeprazol, we had a clear gain of weight over three weeks (200g per week); right now it has been constant for the last four weeks, because we had an episode of diarrhea in the meantime (the stool sample did not show any special findings, except a high content of fat).
The doctors keep on telling me to be patient and to try to start her on other food than mothermilk, which does not work unfortunately. Do you have some advice for me, that could help me further? Best regards...
Dear parents,
you describe that your daughter is not gaining weight and that she has fatty stools. This may lead to the conclusion that the intake of calories seems to be adequate while the absorption from the bowel into the body is not adequate. The digestion depends - on one hand - on the intake of pancreatic enzymes. Therefore one has to make sure, that the dosage of pancreatic enzymes is sufficiently high enough. On the other hand, the effect of the pancreatic enzymes does depend on the acid content of the bowel. If the acid content is too high the enzymes are less effective. Therefore drugs which block the acid production in the stomach (please note that the dosage is important) may be helpful. To wait until the digestion is getting better spontaneously does not seem very helpful to me.
Please contact your CF-doctor in any case again, for getting a detailed evaluation of the nutritional situation (e.g. with the help of a specialized dietitian; calory intake and absorption (assessment of fat content of the stool)) and probably for an optimization of the dosage of enzymes and acid blockers. Furthermore you can get some helpful ideas from a pediatric dietitian specialized how to start your baby on other food than mothermilk, or how to enrich the food with calories if necessary.

I hope this could help you,
Yours sincerely,
PD Dr. M. Ballmann