Proper Amount of Enzymes

T

TuffsStuff

New member
We recently moved and found out from our new CF doctor that we were giving our child too many enzymes. The doctor explained that if your child is getting a burn / rash during stools that this is a sign of improper enzyme count for the food intake. Come to find out, the enzymes that our prior CF doctor was prescribing for bottles, snacks, etc was about 3 times too much. This causes tears in the intestine linings over time, internal bleeding. The old dietician knew that the enzyme count was high, but said that our child was putting on weight and moving in the right direction so she did not want to make the change at that time. Not only does it cause major problems later on, but it also causes undue pains in the stomach and not to mention the burns / rashes. There is a formula for figuring out the right dose of enzymes that your doctor should know, and there is also a maximum amount that should not be exceeded for a body weight. If you are experiencing any of these problems, please ask questions. Our child stopped getting the burns, started sleeping better (no pains), and is gaining weight better than before (he eats better now that his belly doesn't hurt). Also, our new dietician put together a fast food enzyme counter for various fast food companies. It breaks down the fat in popular meals and gives you an enzyme count for the required amount to take for each. I will be typing one up soon and will post a forum entitled enzyme counter for those who want it. It is really handy. Stay strong parents, and god bless the people fighting CF.
 
A

anonymous

New member
this is an ongoing problem with us. My son, 10, currently takes enzymes according to the amount of fat he consumes....we count the fat grams and he takes 1 pill for every 3 grams of fat. This is very difficult at times, because you don't always know what is in the foods you eat, and it requires a lot of guess work. I wonder how other people do it? The doctor suggested taking a set amount for meals no matter what he eats, but that don't seem to work. some meals have very little while others have quite a lot of fat. What are we to do? I am considering talking to his doctors about another thought.... he is at the point where he can identify if a meal has a lot or a little bit of fat therefore was thinking of a system. A scale........."A, B, C, D"..........A=very little fat........D=a lot of fat. if it is an "A" meal take 2 pills, if it is a "B" meal take 4 pills, etc. or something along that idea. any thoughts on this? how are you teaching your children to take responsability for taking his/her own meds???
 
A

anonymous

New member
Enzyme dose should be based on how many units of lipase per pound of body weight you need. Find out how much Lipase is in each enzyme by reading the little slip of paper attached to the bottle. It is important to use as little enzyme as you need b/c over time, high doses can result in fibrosing colonopathy. A good rule of thumb is to keep it at under 2500 units of lipase per meal. for example: I take 4 Ultrase MT18 w/ meals= 72,000 units lipase72000/ 90 pounds= 800 units per poundThe easiest thing to do is to set a number of enzymes (I do 4 for meals, 2-3 for snacks) and adjust depending on what is being eaten rather than try to figure out every meal (one extra or less).People are usually started on 250-500 units lipase per pound. I sugest figuring out how much lipase is being consumed and monitering stools. Debbie22 yr old w/CF
 
A

anonymous

New member
When my daughter changed her enzymes to pancrecarb, she was able to cut her dose in half. It turns out that many CF-ers have a lot of acid in their intestines- the pancrecarb neutralizes the acid and allows the enzymes to work much more effectively. Now she needs just a very small dose.
 
A

anonymous

New member
I used to take a few tums throughout the day to keep acid at bay b/c it deactivates enzymes. Now I take one prevacid a day. Debbie
 
You must log in or register to reply here.
Top