creon and fat

[Guest guest]

I read the attached leaflet - should've done that first before writing -

I should have mentioned that each person taking enzymes should not take

too many. In the leaflet it says " The maximum recommeded dose of lipase

in infants and children with cystic fibrosis is 20,000 units per

kilogram body weight in 24 hours " .

Ainslie did a " Go and Grow " program through the hospital, sponsored by

Janssen Cilag and it is written by Stapleton of the Department

of Nutrition and Dietetics Princess Margaret Hospital for Children. In

this it states that " It is recommended that you do not have more than

10000 iu of Lipase for each Kilogram that you weigh " .

So if a child is 20kg and is taking pancrease -5000 iu lipase can have

up to 40 capsules a day

creon or cotazym forte - 10000iu can have 20 capsules per day

This is what Ainslie has been doing all of her life - although initially

we just guessed how fatty foods were. Now she looks at the labels and

sees how much fat is in the food or goes to the fat counter book and

decides how many enzymes she needs. She often is more correct in her

knowlegde about how much fat is in food than her father. It is quite

funny when she tells him that she needs 4 not 3 enzymes for a particular

meal and her father is adament he is right and then she proves that she

is the one who is right.

Terri.

[Guest guest]

I have read those studies too, and some of the docs tend to go along with

that thinking, however, you all must remember each person with CF has their

own unique level of digestive involvement. Therefore, while the theory may

work for some , others may need more or less lipase with meals. For

instance, Nick has always needed more. He takes 5 Ultrase MT-18's with meals

and snacks. We have nothing but whole milk, brown eggs, real butter, etc...

and I do make everything very high calorie when I cook. Nick also takes

Prilosec twice a day, as it works better than Zantac.

He has always required a high dose of lipase, even when small. We have

attempted to reduce his lipase intake with horribly stinky results!!! Also

messy, if you know what I means. So that is what leads me to believe it is

not just the high cal, high fat diet I fix.

Amber

Nick's mom

[Guest guest]

Terri,

Thats true. They said 6-8grms for each Creon, some kids need the 6 -

like Eilish and some need the 8, like Ainslie.

creon and fat

Ainslie uses one creon capsule - lipase 10000, amylase 8000, protease

600 - for every 8 grams of fat. We have gained this knowledge from the

dietician and also reinforced with some childrens activity books put out

by the drug company. This works for Ainslie.

Terri