enzyme dosing?

[braineebug]

My 2 youngests have CF. My middle girl is 20 months and was diagnosed at 4 months old. We just had our 3rd November 11. He was diagnosed thru amnio when I was 16 weeks pregnant.

I don't understand how they dose them for their enzymes? We're still trying to figure out the right dosage that works for her. She is on Zenpep 5 and gets 3 for snacks and 5 for meals. They keep talking about her starting dose. I've asked but I still don't understand lol Can anyone help? Our new baby boy is 7 days old and he eats constantly. He's been pooping up to 18 x a day. I'm assuming he'll need enzymes and we'll find out on Tuesday at his clinic visit.

We're still really new to CF and we just don't understand how any of this works yet <img src="i/expressions/face-icon-small-sad.gif" border="0"> We thought knowing the new baby had or didn't have it would help but now that he's here I feel even more upset and stressed out and guilty. How can my perfect baby boy have such an awful disease? Our middle girl who has CF was born 10 weeks early and was diagnosed after she came home and contracted RSV. She's been in and out of the hospital and is finally doing really well but we're soooo scared to have a repeat with the new baby.

 

[braineebug]

My 2 youngests have CF. My middle girl is 20 months and was diagnosed at 4 months old. We just had our 3rd November 11. He was diagnosed thru amnio when I was 16 weeks pregnant.

I don't understand how they dose them for their enzymes? We're still trying to figure out the right dosage that works for her. She is on Zenpep 5 and gets 3 for snacks and 5 for meals. They keep talking about her starting dose. I've asked but I still don't understand lol Can anyone help? Our new baby boy is 7 days old and he eats constantly. He's been pooping up to 18 x a day. I'm assuming he'll need enzymes and we'll find out on Tuesday at his clinic visit.

We're still really new to CF and we just don't understand how any of this works yet <img src="i/expressions/face-icon-small-sad.gif" border="0"> We thought knowing the new baby had or didn't have it would help but now that he's here I feel even more upset and stressed out and guilty. How can my perfect baby boy have such an awful disease? Our middle girl who has CF was born 10 weeks early and was diagnosed after she came home and contracted RSV. She's been in and out of the hospital and is finally doing really well but we're soooo scared to have a repeat with the new baby.

 

[braineebug]

My 2 youngests have CF. My middle girl is 20 months and was diagnosed at 4 months old. We just had our 3rd November 11. He was diagnosed thru amnio when I was 16 weeks pregnant.

I don't understand how they dose them for their enzymes? We're still trying to figure out the right dosage that works for her. She is on Zenpep 5 and gets 3 for snacks and 5 for meals. They keep talking about her starting dose. I've asked but I still don't understand lol Can anyone help? Our new baby boy is 7 days old and he eats constantly. He's been pooping up to 18 x a day. I'm assuming he'll need enzymes and we'll find out on Tuesday at his clinic visit.

We're still really new to CF and we just don't understand how any of this works yet <img src="i/expressions/face-icon-small-sad.gif" border="0"> We thought knowing the new baby had or didn't have it would help but now that he's here I feel even more upset and stressed out and guilty. How can my perfect baby boy have such an awful disease? Our middle girl who has CF was born 10 weeks early and was diagnosed after she came home and contracted RSV. She's been in and out of the hospital and is finally doing really well but we're soooo scared to have a repeat with the new baby.

 

[JaneCFer]

Hey,
I'm so sorry to hear that your stress level is so high. I have nothing but admiration for CF parents. I wasn't diagnosed until toddler years, but I will try to help you. To my understanding, enzymes are really not an exact science, you kinda have to play with it to get a level that works for your child. Generally the amount of enzymes needed are dependent on the particuar meal, I think specifically the fat. I would think that your son's would be easier simply becasue his diet will be consistently breast milk/formula.

 

[JaneCFer]

Hey,
I'm so sorry to hear that your stress level is so high. I have nothing but admiration for CF parents. I wasn't diagnosed until toddler years, but I will try to help you. To my understanding, enzymes are really not an exact science, you kinda have to play with it to get a level that works for your child. Generally the amount of enzymes needed are dependent on the particuar meal, I think specifically the fat. I would think that your son's would be easier simply becasue his diet will be consistently breast milk/formula.

 

[JaneCFer]

Hey,
I'm so sorry to hear that your stress level is so high. I have nothing but admiration for CF parents. I wasn't diagnosed until toddler years, but I will try to help you. To my understanding, enzymes are really not an exact science, you kinda have to play with it to get a level that works for your child. Generally the amount of enzymes needed are dependent on the particuar meal, I think specifically the fat. I would think that your son's would be easier simply becasue his diet will be consistently breast milk/formula.

 

[kitomd21]

Congrats on your newest addition!! I'm sure he's beautiful!

There is a max amount that you can give without increased risk of side effects. Your daughter is taking Zenpep 5 capsules which means 5,000 lipase units per capsule. For children 1 to 4 yrs old, the dosing is based upon up to 1,000 lipase units per kilogram of body weight - the starting dose you're referencing. The maximum dose is 4,000 lipase units per kilogram of body weight. If your children are on a dose higher than 4,000 lipase units per kilogram then something else is needed (e.g., PPI or antacid to help with enzyme efficacy as they function poorly if the stomach is too acidic). Some patients do respond better to different enzyme brands - which was the case with my daughter. She does really well with Zenpep, but not Creon.

We felt very much the same as you do...confusion...uncertainty....among many other thoughts and feelings. You'll find out what works best for each child as each patient truly can be different from the next.

 

[kitomd21]

Congrats on your newest addition!! I'm sure he's beautiful!

There is a max amount that you can give without increased risk of side effects. Your daughter is taking Zenpep 5 capsules which means 5,000 lipase units per capsule. For children 1 to 4 yrs old, the dosing is based upon up to 1,000 lipase units per kilogram of body weight - the starting dose you're referencing. The maximum dose is 4,000 lipase units per kilogram of body weight. If your children are on a dose higher than 4,000 lipase units per kilogram then something else is needed (e.g., PPI or antacid to help with enzyme efficacy as they function poorly if the stomach is too acidic). Some patients do respond better to different enzyme brands - which was the case with my daughter. She does really well with Zenpep, but not Creon.

We felt very much the same as you do...confusion...uncertainty....among many other thoughts and feelings. You'll find out what works best for each child as each patient truly can be different from the next.

 

[kitomd21]

Congrats on your newest addition!! I'm sure he's beautiful!

There is a max amount that you can give without increased risk of side effects. Your daughter is taking Zenpep 5 capsules which means 5,000 lipase units per capsule. For children 1 to 4 yrs old, the dosing is based upon up to 1,000 lipase units per kilogram of body weight - the starting dose you're referencing. The maximum dose is 4,000 lipase units per kilogram of body weight. If your children are on a dose higher than 4,000 lipase units per kilogram then something else is needed (e.g., PPI or antacid to help with enzyme efficacy as they function poorly if the stomach is too acidic). Some patients do respond better to different enzyme brands - which was the case with my daughter. She does really well with Zenpep, but not Creon.

We felt very much the same as you do...confusion...uncertainty....among many other thoughts and feelings. You'll find out what works best for each child as each patient truly can be different from the next.