Kreon® dosage

Question

Dear experts,
I have a 4 year and 9 months-old boy diagnosed last year in October 2012 with cystic fibrosis, after he had two sweat tests, the first with the value 98 and the second 58. The sweat test was done because the child had chronic diarrhea for about a year.
As a treatment we currently have 25000 Kreon® and capsules are taken at main lunches, Pulmozyme® and TOBI® because he had in March Staphylococcus aureus in the culture. Can you please tell me if a side effect of TOBI® can be diarrhea, because since he started to take TOBI® (3 weeks ago), the child has diarrhea.
We need to know how to take Kreon because of the child's diarrhea, it's difficult as the child eats more a dietary food regimen than normal diet, he is not eating milk products because he is allergic to cow's milk protein and doesn’t have gluten intolerance because he was tested for celiac disease and the test was negative, stool and fecal was also negative.
Now the child is 104cm tall and weighs 17kg.
Thank you.

Answer

Hello,
chronic diarrhea is one of the classic signs of cystic fibrosis secondary to pancreatic enzyme insufficiency. The correct treatment is the enzyme supplementation, as reccomended in your`s child case, without restricting diet, but preferring to adapt Kreon dose to nutrition. Treatment of pancreatic insufficiency is based on pancreatic enzyme replacement intake. Enzyme dose recommended is about 2000-2500 IU / kg for main meals and 1000-1500 IU / kg / meal and is recommended to be monitored by physicians specialized in cystic fibrosis nutrition.
The dosage of the enzymes has also to be adapted to the fat content of the meal; about 2000 - 3000 IU lipase per gram dietary fat are recommended. Enzymes are best given at the beginning and during the meal, e.g. half the dose at the beginning and half in the middle of the meal.
Your child's correct dose is the dose that corrects steatorrhea, when the abdominal pain disappears, the stool number and volume become normal and when the child record a satisfactory weight gain. It is important to maintain a state of optimal nutrition, because this will influence the lung status. A larger amount of enzymes may be necessary to meals rich in fat or if diarrhea persists. Of course it is possible that other diseases, such as cow's milk allergy (as you told) to be overlapped or other causes of chronic diarrhea.

To your question about the side effects of inhalation of TOBI®, it can be said, that nausea, vomiting and stomach ache are reported in connection to TOBI® inhalation, diarrhea was not mentioned as a typical side effect. Therefore optimizing the enzyme intake and/or search for other reasons would be important.
If we can help you please contact us.
Best regards
Prof.Pop

17.09.2014